For Interstitial Cystitis and Ostomy Patients

Further Up The Road!

2007-11-23T20:33:00.000-08:00

In order to reduce the pain I have a few more surgeries to go. I am not scared for either of them as they have both been fully explained by my medical team. One surgery is on November 29th which is the Laparatomy to reduce the abundance of adhesions. My Bladder and Uterus are stuck to my pubic bone thus when the bladder gets full it pulls on that pubic bone. While the Doctor is in there he will clean out my uterus, ovaries, and fallopian tubes, giving us about 8 months to try and conceive again. That is our last chance (as the adhesions will eventually grow back) even with a barrier put in there. Eventually a Hysterectomy will be needed but I am trying to put that off as long as I can. I believe in miracles because I was one myself so I'd like to keep my female (baby making parts) in tact for as long as I possibly can. I got a phone call today from the PNE Specialist to discuss the surgery.The 2nd Surgery is the very LONG awaited Pudendal Nerve Decompression. This is a very minor surgery compared to every thing I have already gone through. The Doctor will make a tiny incision in my vagina and go into where the Pudendal Nerve is located. Then they test the nerve while inside with a special machine. They test it's conductivity on both sides. After this they gently decompress around the pudendal nerve. It will take about 30-45 minutes. The they test the nerve conductivity again and sew up the incision. When I wake up I will have an epidural for 3 days for the pain. i won't need a foley catheter because I can sit up an empty my woderful Indiana Pouch at the side of the bed with a male urinal. After 3 days I will be discharged locally in NH and put on oral pain medication while healing. After a week he will clear me to go back home. This surgery will be done sometime in the Spring as I have a wedding to attend Easter weekend and I would like it done after that. My loving Grandmother is helping financially and my Mom even though she is going through her cancer treatment will also attend this trip to NH. This Doctor is excellent in his line of work and has done over 100 of these PNE Decompressions, in fact he was about to do one today after he called me. I would only go to the best! The road continues. Hopefully the pain will be reduced enough to live with a little more activity than I do now. I cherish the good days and rest and take care of myself on the bad days.

Good Days and Bad Days

2007-06-14T09:17:00.000-07:00

I have not put up a journal entry in here since the winter. (My Indiana Pouch is 1 year old and doing wonderfully) After I was diagnosed with Pudendal Nerve Entrapment and Vestibulodynia, I didn't want to write. There is more surgery in my future. Until that time, I have some really good days. On the good days I take them and run as fast as I can. The bad days are real bad. I've been taking one day at at time. I try to listen to my body and when I need rest, I do. I turned 31 on June 11th. I do feel awfully behind in life but I try to look at what I have been through as some wonderful accomplishments. I've been taking a lot of walks, going to Physical Therapy, and spending time with family and friends when I'm feeling up to it. Taking photos of the nature and life around me has been fun and rewarding.

More Snow in CNY

2007-02-09T13:43:00.000-08:00

As you can see, my car is covered. It's not as bad as to the North of us where they got over 6 feet! Needless to say, Today was a SNOW day for us.

Kara

Ice Storm Western NY 2007

2007-01-15T10:33:00.000-08:00

We had an ice storm this morning. It left us with some pretty photos. To see a closer view just click on each photo.

First Snow!

2007-01-10T07:52:00.000-08:00

We have gotten a foot of snow bright and early this morning. I have to travel to my Parent's House because I have a nerve block tomorrow and I am not looking forward to packing up my car, digging it out of the snow, and driving in it for 2 hours. I'll be sure to pack emergency everything! Early this morning when my Husband was leaving for work, his Boss called and said he was stuck on our hill and going nowhere. When I looked out the window I saw a car 2 cars stuck in our paking lot. I can't imagine having to call someone out to pull you out of your own driveway. Needless to say, I will be going at a very slow pace today to match my very slow mood to getting ready to go. We are expecting several more inches. We have had a very mild winter before this and have a total of only 6 inches for all of our winter season. Today obviously changes that total. We are used to very heavy winters and we live in what is called the "snow belt" for NYS. Which means that we always get hit pretty hard. But the first time it happens we are never fully prepared.

Happy New Year!

2007-01-01T08:31:00.000-08:00

I managed to drag myself out of bed and go to our New Years Eve Party. There were 20 people there. I got dressed up and even put on some makeup. About an hour into the party the Host says: The toilet is broken and we don't want anyone peeing outside so you will have to hold it. Well you can imagine everyone went nuts! Not to mention there were two kids there staying overnight. There were 9 peopel staying overnight. The Host then says: STOP TALKING about our problem! Everyone went nuts again and started talking about it even more. You all can imagine how I felt! IT's and IC Person's WORST NIGHTMARE!!!!!!!!!!!!!! And we were ALL drinking! I wanted to leave but the Host insisted we all stay until midnight. It was a disaster! The toilet backed up into their basemet and there was raw sewage all over his basement. One of our friends lived a few blocks down and I was Sober so they designated me the DD. We had to drive over to his house to pee. I took 3 people over and then I said! That's enough. Luckily my Indiana Pouch can hold 1000cc's. I was able to hold it until we left at 4:00AM.

Kara

On the Road Again

2006-12-19T16:29:00.000-08:00

The Testing Begins Tomorrow.
I will start the testing process to determine what is happening. It will be a long road but at least we are starting and I don't have to wait forever.
Kara

Happy Thanksgiving!

2006-11-23T17:44:00.000-08:00

The food was great. We only went to Allen's Moms House. We are now spending time with my family. I am thankful to have Allen and for his Mother to have given birth to him so I would have someone to marry and to have been so good to me. The girl in the photo at the dinner table is my Sister-in-Law.

Phantom Urgency and Nerve Damage

2006-11-21T18:39:00.000-08:00

For my phantom urgency they did a test run to see if they could find the nerves that were causing the nerve damage. They found the right nevrves so they are now going to do a RadioFrequency Ablation. I am having Radiofrequency Ablation to the nerves that go to my urethral area. A Bilateral Superior Hypogastric Plexus Ablation.
Radiofrequency ablation (RFA) is another way to destroy nerve tissue, but instead of using a destructive medication, it uses a needle. Radiofrequency nerve ablation is the term used when radio waves are generated and used to produce heat. By generating heat around a nerve, the nerves ability to transmit pain is destroyed, thus ablating the nerve. Radiofrequency nerve ablation is the term used when radio waves are generated and used to produce heat. By generating heat around a nerve, the nerves ability to transmit pain is destroyed, thus ablating the nerve. These nerves may re-grow over a period of approximately 6 months or less. When the nerves do regenerate you may not experience the same intensity of pain as prior to the procedure. If you have a recurrence of pain this procedure can be repeated.
I hope it lasts longer than a month.

The nurse today said it may not work at all. Great! She also said that it lasted over a year for someone before. So We shall see????

KEEP GOING KARA! Forward is the only way to go from here! LETS HOPE I CAN SMILE LIKE IN THIS PHOTO FOR A FEW MONTHS at least!

To view the rest of this journal and the photos. Click on the left hand side of the page at the archive section.

2006-11-19T12:25:00.001-08:00

To View Old posts and photos, go to the Archives to the Left of this Page. It's Under Archives and then click on June 2006 , July 2006, August 2006, September of 2006 ,October and now November. There are more photos all the way at the very bottom of the page on the left. You can double click on the photos to get a closer view.

Kara's Bladder Reconstruction Recovery 2006 (7 month mark)

2006-11-19T12:25:00.000-08:00

This journal represents just Me, not eveyone will go through the same things that I have. We are all different with respect to bladder removal. This journal represents just ME, not eveyone will go through the same things that I have. We are all different with respect to bladder removal.It's important to remember that this journal reflects my personal journey and is not an indication of exactly what other bladder removal patients will go through. I am only at my 7 month mark out of a 12 month recovery, so some of what I am experiencing will pass with time. Some days are up and some days are down. This is just my own experience. Please don't feel like any of this will happen to you! Even though I am battling phantom urgency and neve damage (that we are currently working on), there are still some fun things that I have been able to do while I have recovered. There are photos on here that show some of the things that I've been able to do for fun. They can be found in the Archive Section of this Journal. YOU CAN STILL HAVE A LIFE DURING RECOVERY! I was able to ride a jet ski for the first time in my life while on Cape Cod, I was able to get into a bathing suit even tough I didn't want to because I never wore a one piece before, I went to the NYS Fair, I went to our yearly Clambake until 4 in the morning, and I also went away and celebrated my 5 year wedding anniversary. All of this was done during this recovery and then some. So it's not ALL bad. I had some fun this summer! And I have no doubt I will have some fun this fall and winter too. This is my place to come and vent both the good and the bad. I don't mean to scare anyone that is having this surgery. I just tell the truth. If some of it may feel frightening to you, please read no further.

I AM NOT GIVING UP YET! THE STORY OF TODAY!

2006-11-09T17:43:00.000-08:00

I'm sorry I didn't write sooner, but I was knocked out as you will understand after reading this.I had the spinal anesthetic nerve block at around 3:00 today. It was a really rocky start. I told the nurse that was setting me up that I was resistant to Versed which is the twilight anesthesia. I asked if they could give me some more of it or something different instead. Because of my past history with being awake during major surgery, I really didn’t want to feel the needles and the procedure and I have every right to those feelings. Each person that gets a nerve block gets this conscious sedation and I definitely wanted to have it but they use Versed which does nothing for me, thus I am wide awake for the whole thing. The nurse went to ask the doctor to see if we could work around this. The doctor told the nurse to cancel the whole thing. So then I was really sad because I felt another rejection and begged them to just do the procedure without any conscious sedation. I said I did not care how much it hurt, but that I wanted the chance to see if they could find the right nerves and for the hope that it might work. The nurse went back to the doctor and told him that I wanted the procedure anyway without sedation. Then the Doctor, Himself came out to me and explained that they NEVER use more than 1 vial of Versed which is the sedation. I said ok, just do it then. He said OK but you could tell he didn’t want to touch me. We told the nurse who would be administering the Versed and monitoring my vital signs that I suffered from severe post traumatic stress disorder from Anesthesia Awareness. This was when I was put to sleep with full sedation and an epidural and both failed and I was awake for 9.5 hours of cutting, operating, and sheer torture but could not tell them I was awake because I had my eyes taped shut, a tube in my throat, and they had given me a paralytic, so there was no way to let them know that I was awake and felt and heard it all. Later on I told my Surgeon every thing about what I remembered during the surgery and the conversations that they had in the operating room with each other, he was floored and could not believe it but he did because everything I said was exactly what happened. So this nurse pulled the doctor aside and told him about this. THEN THIS DOCTOR understood why I was so upset about the Sedation and why I wanted it so bad! So the procedure started and they watched my vital signs. I did not respond to one syringe full, so I heard him say, “She also wanted some Zofran too, can someone get some Zofran for her now?” Then I also heard him say another vial of Versed Please. I was so happy that he actually was honoring my wishes that I started calling him “Top Notch Tizo” and “Terrific Tizo” He ate that up real well and told me to keep saying it and that no one had ever called him those names before. I heard him say two more vials of Versed Please! I kept on telling him how Terrific he was. I told him that we were going to get the correct nerves and that this was going to work because he was the MAN! I didn’t feel any of it. At the end, I asked to speak to him after they put me into recovery and I put both of my thumbs up and gave him a huge smile. NO ONE EVER gets 4 vials of Versed for this procedure but I did.
When it was all over he asked me what my pain level was and I said, what pain? I don’t feel anything. The pain is a zero! He was so excited and so was I. BUT this is only a test to see if he got the right nerves it’s not meant to last. The next 48-72 Hours are crucial to let us know if it worked or not. I did not feel any Phantom Urgency. It’s now 8:00 PM 5 hours later and I am doing well. I feel a little tingly down there like when your foot falls asleep but no Phantom Urgency right now. If this works, they will do it again but they will ablate the nerves and that can last 4-6 months. There are also options to cut the nerves if it works really well and this is called Denervation and this is done by a Neurosurgeon. What was done today was called a Bilateral Superior Hypogastric Plexus Block.
Now we just have to wait and see what happens. There is an anesthetic in there that could wear off at any time because we are all different. It may not last the full 72 hours. But waking up with a pain level of zero was extremely important to let us know that he definitely found the right nerves to take away that Phantom Pain in the Urethral area. HE FOUND THE CORRECT NERVES! That means something as to how we proceed, weather it be with this Doctor, or another Doctor.

I am scared but hopeful! I hope that my body will cooperate with this test! I think he was glad at the end of the day that he didn’t give up on me and gave me a chance. Like I’ve been saying to all of these Doctors, “If you don’t give up on me, then I won’t give up on me.”

Thank you for all of your love, support, and prayers, they are all needed at this time as we wait to see what happens. I appreciate each and every one of you more than you know! I don't know what the future will hold but I do know that I have the support of some wonderful people and for that I am so grateful!

Love,

Kara

Pictures of My Closest Friend Amy and her Son, Collin

2006-11-04T19:24:00.000-08:00

These are photos of my closest friend, Amy, she's like a family member to me. These are Photos of her Wedding Day in 1999. The one with Collin on the pony is current, taken about a month ago. He is 5!

Haunted Halloween!

2006-10-31T21:54:00.000-08:00

Despite the type of day it was today. I still managed to drag myself out to visit some dark angels. They go well with my state of mind. We had fun! We ate chilli, drank wine can cocktails and and had lots of candy!

Bed Time with The Reeses

2006-10-22T21:28:00.000-07:00

This is our Sunday Night Ritual. I am on the left, my Husband is on the right. Justin is on the left by my feet and Ghengus is on the right by my Husband's feet. The photo across from all of us is one of our favorite wedding photos. I thought it was kind of neat to have the whole family lined up exactly the way the wedding photo is taken and our places in bed with the Maine Coons. It's a cute photo.

Thank You Amy!

2006-10-19T10:21:00.000-07:00

Amy sent me a Beautiful Bouquet of Flowers this morning because I went into the Hospital. I just wanted to thank her for her kindness and thoughtfulness regarding my health. Amy goes above and beyond the call of duty when she has to and yesterday and still today, she is still doing that for me. These flowers will always be remembered as well as the wonderful magazines she had sent with it. SO KIND! and so THOUGHTFUL! I took a photo of the flowers to remind me of Amy always and her tenacity to get things done and to help her friends when they are in need. Everyone needs to have a friend like this! Thank You Again Amy! I wont' forget it!

Love and Hugs!

Kara

Fall ing Down.

2006-10-17T14:43:00.000-07:00

The trees are pretty. The Rain is dreary. It's Fall in CNY. I am working on finding some answers but it's real hard when there are no doctors in the area and surrounding areas that want to actually help. I am getting really tired of hearing, "I can't help you. Go to your Surgeon in NYC" My Surgeon can't help either or else he would. I have decided I am not going to take "I can't help you" as an answer anymore. From now on I am going to ask them if they will refer me on to someone else. They have way more access to the medical community than I sure do. I am tired of doing all of the work on my own.

Extra Bladder Removal Support and Recovery Support is an Email Away!

2006-10-04T10:56:00.000-07:00

Extra Bladder Removal Support and Recovery Support is an email away!

If you want to talk about Bladder Removal and the Challenges you may face while you recover feel free to email me anytime.Bladder Removal has its ups and downs, especially during the recovery period. It can be very scary and very lonely when you don’t understand the changes that your body is going through. I am here to answer/get answers for, or direct you to where you can get some answers: any problems, questions or concerns you may have as you may consider bladder removal as an option or if you have already had it removed and are having problems. If you are new, scared and overwhelmed about bladder removal and what you could expect during the recovery period, I will be here for support as I am going through it myself. Please PM through the site or e-mail me (Kara) at: klkreese@twcny.rr.com

My surgery was a 100% success as far as my Neobladder being turned into and Indiana Pouch, but there have been some bumps in the road while I am recovering and this is normal. If you come out of your removal and don’t feel IC free it doesn’t mean that the surgery failed. Sometimes things just have to be ironed out as you recover and that is ok. There is always away around things in life. I will be here to offer support is you need it.

* Bladder Removal/Ostomy Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

(I have put together a 22 page SUPPORT GUIDE that I can send to you though email regarding all aspects of Bladder Removal from: Before thinking about bladder removal and what you shoud know the, ups and the downs, the good, bad, and ugly too.What is urinary reconstruction and diversion? Urinary diversion options. The advantades and disadvantages of each diversion, Questions to ask your doctor if he/she has considerd removing your bladder, Information on Stomas, Ileal Conduits, Indiana Pouches, and more, Help preparing for bladder removal, the emotional and physical aspects of it, inofrmation on catheter care and medic alert information, and a whole bunch of information for those of you who just had or about to have your bladder taken out.)

Sincerely,

Kara

A new Day, View from my back balcony!

2006-10-03T04:07:00.000-07:00

Today is a new day here in Centeral New York. I was up early enough to cath the sunrise. I am hoping today is a good day. It's 7:00AM here. My favorite band is coming out with thier new CD today and I am so excited. The stors open in 3 hours. The Band is Evanescence , the CD is The Open Door[2006]. I have not decided if I am going to buy it on Itunes or go to the store to get it. But this is one thing to be happy about Today!

Kara

One tough Year!

2006-09-28T23:49:00.000-07:00

It's 2:01 AM where I am and I can not sleep. Too many thoughts going through my head. I am laying here as depressed as can be. I have already spoken to my therapist by phone this week, but I only get her time for one hour every two weeks and with the load I am carrying on my shoulders, sometimes I feel like that just isn't enough. I was wishing this reconstruction would be the end of the bad times and hello to the good times but it has not come to that yet. To those of you who have been incredible supporters to me throughout this journey and as I move forward, I thank you. I am wishing I could be more positive for my own self just like I am for most of you when you ask me for help but I am just not feeling it right now, for myself.

It just goes to show you that I am human too and admit when things are not perfect. I could pretend that everything is wonderful and life is wonderful but that would be a lie and I don't lie to my friends. The truth is easier. Plus I am hoping someday I can look back on this and say "remember when....." with a brighter future at my feet.

We had a family affair this past weekend and I saw some family members that I have not seen in years. They did not ask one word about my reconstruction which is so near and dear to me. They didn't even ask how I was feeling. I know people don't know what to say but I don't feel this is a good excuse, which is why I come here a lot for love and support. You all know way more about me than my own flesh and blood and most of you CARE! That to me is family! I don't talk about my bladder removal with my "best" friends, Sister and I don't talk about it with extended family. So that leaves my Husband, Mom, Gram, and my IC Family here. Doctors have come and gone like swinging doors in a large mansion! I have a terrible fear of abandonment.

As far as the surgery went, I was a 100% success. My Surgeon could not have asked for a better outcome under my circumstances going into it. But my recovery has been riddled with some issues of which we don't know the answers to. If it is in fact phantom pain, it does relate to bladder removal. I hope that one day I can tell you it's gone and if it happens to you too that it too shall pass.

I was just turned down by a nerve specialist because I mentioned the word Interstitial Cystitis in my email. How awful.

There used to be a safe place to go that was my favorite in the whole world. I didn't feel I had far to go to get there, it required no advance reservations and had no travel restrictions. In this place I felt totally free to just be myself. I could laugh and be silly, or sigh or cry without fear that anyone would object or think it strange at all. In this place I knew that I was accepted and appreciated just as I was, and yet in this place, I felt that I could grow and spread my wings. This place I speak of was here.

As of late, I am afraid that because I am not going back to work, having kids, and signing up for classes, that I have failed this surgery is some way and that I am of no use to anyone traveling down this road. If anything I have more time on my hands to offer support and knowledge. Some bladder removal patients take a little more time and tinkering to get better than others. I am one of them.

I am taking this day by day, one step at a time as slowly as I need to go. I wouldn't want to push myself for the sake of pushing myself.

Just feeling down tonight and can't sleep thinking of all of the things I am not yet able to do with my life.

Thanks for listening.

Sincerely,

Kara

A Visit to My Home Town

2006-09-24T21:01:00.000-07:00

I went to my parents house where I grew up for a few days. It's an hour from my house. Sometimes I come here to rest and get away from the stress of "it all". I also had to get fitted for my sisters wedding. We also celebrated a Jewish Holiday with my Grandparents. My mom and I went for a walk today on the canal by our house. Some of it was restful and some of it was stressful and some of it was painful. I am still in pain an just as confused as to what is happening as ever. I just want some answers. I have an old OBGYN here that now is just a GYN that is a alternative hormone specialist. He is one of the best in the Nation but I don't think he is seeing any patients anymore. I am going to call the office tomorrow to see if I can get an appointment within the next few months. If not maybe he has someone he can refer me to. He was a real nice guy but I have heard that he is getting burnd out. His office is about 15 minutes from my parents house. I am hoping he may have some answers and a ray of hope for us since I can't take anything synthetic.

Kara

Saying Goodbye is NEVER an easy thing to do!

2006-09-08T18:51:00.000-07:00

My time with my Surgeon is done. He has completed his task with me and has done it wonderfully! I was in desperate need of something very specific and he was able to do this for me. He is easy to communicate with and while he doesn't have all of the answers and can't fix everything he did fix the one thing that needed to be fixed. Today was our last visit unless something happens to me. I am in great condintion upon physical exam and eveything has healed well. I will not be seeing him again unless there is some sort of emergency. My Indiana Pouch is doing well as is the stoma and everything inside has healed up well. The Phantom Urgency, like I originally thought, will hopefully be managed on a continuous basis by my Pain Management Team. The local Urologist will be taking care of my other urological needs at this time. I am looking to switch to the local Urologist's Partner as he seems to take much better care of me in an emergency. Saying Goodbye is NEVER an easy thing to do, especially to a Surgeon that has changed your life in ways you can never fully imagine, unless you try to live them! He gave me a gift that I will cherish for the rest of my years and it's priceless!I know how to contact him when it's necessary, for now I hope he that every patient that comes into his life gets the care from him that I did.

Sincerely,

Kara

Our Last Day on Cape Cod I made it into that Bathing Suit!

2006-09-07T14:47:00.000-07:00

Our last day here on the Cape we went out for the day and I did finally make it into that Bathing Suit that I wanted so badly to get into 3 months out from my Surgery. I DID IT. I wish I felt better, but I did it anyway! We had a fun time. We took the boat out to two lunches and for some drinks and then we came back to the house. Onto Staten Island we go at around 7pm. We will be on the road for a long time and I am NOT one bit happy about that! But I did wear that Suit this year and just wanted to celebrate that!

Still on Vacation and wishing for some better Health Days!

2006-09-06T18:42:00.000-07:00

I went to Hyannis, MA with my Mom and Dad today. We went shopping. We also went out to dinner. It was nice to get out. My Dad bought me a ring that I had lost a few months ago. It's called a Cape Cod Ring. I am so happy to have it! What a beautiful gift. It's sterling silver with a 14k gold ball in the middle of it. It sits right on the finger next to my wedding ring. I had an OK time. This trip was just not mean to be at this time. My Husband got a Promotion at work and is very happy. We are on our way to Staten Island tomorrow and then on to NYC. I just wish the phantom would go away and give me peace. I wish I could figure out what is happening and how to stop it. Damn fertility drugs have taken so much from me!

Phantom Urgency couldn't keep me from ONE thing!

2006-09-05T06:42:00.000-07:00

Despite the horrible time I am having with my phantom pain, It could not keep me down from the one thing that I wanted to do the most while I was here. I've wanted to Jet Ski since I was 14 but have not had the chance to. Yesterday was my chance and even though I felt that aweful feeling that came from traveling, stress, and the dreaded Ovulation time, I still did it! I finally rode on the Jet Ski.

Cloudy Cape, Kloudy Kara!

2006-09-03T12:44:00.000-07:00

Yeterday before we left, Saturday September 2nd is the day I started to feel the phantoms again. As I look back on this journal they seem to happen a week before I am about to ovulate and then disappear. The reason I am writing this post is to try and log that this time around I am suffering again. If I can get some sort of accurate log, maybe we can figure out how to help this problem. Each month it seems to be one or two days out of the month and then the rest are fine. Even with all of the stress and passing ovulation. Needless to say I am stuck upstairs in my "cage" of IC. I am not out with the crowd. I am not out shopping. Our trip up was aweful. I could not stand the car ride. And maybe it's just way too soon to be doing so much activity with such a delicate surgery. The bladder feels fine. It's just where the urethra used to be that is having issues. Yesterday and Today. None of my meds again just like last month are working for me and there seems to be no explanation. No Urinary Tract Infection. My Primary Care Doctor left a messagge on my cell phone saying that the culture I dropped off on Friday was Negative and to have a great time on the Cape! Yeah! GO KARA! I decided to stay in today and baby myself since it's very cold, rainy, and windy here and hope that tomorrow is a better story. Signing off for now! (The house in the photo is the house we are staying in all week. I stayed on the 3rd floor with the guys that live here.)

Kara

Getting Ready for Vacation!

2006-08-31T16:16:00.000-07:00

I've been busy all week getting ready to go to the Cape and NYC. It's been stressful here as of late so I am looking foward to going. The only thing I am forgetting to bring is my Husband. My bladder feels good but anything could happen at any time and believe me, I am prepared for it. Bladder Removal can throw you for a loop sometimes. I hope I have a good a good time. I really need it!

NYS Fair

2006-08-26T09:19:00.000-07:00

The fair was fiar. It was packed with so many people. We saw a concert, ate A LOT, and did a lot of observing. I wanted to go and see all of the show bunnies because I have a ten year old bunny so I always like to go and take photos of the bunnies. We were there for 8 hours. I went to the bathroom once the entire time and that was not because I "had" to go. I thought it would be wise to empty it to avoid an infection. I emptied it at the 4 hours mark. I have a bathroom there that no one knows about so it's very quiet and private. There's a woman every year that keeps the rest room clean and she says to me every year. "When are you going to come around here and show me your pregnant tummy or your new baby. She says she's waiting. I say "I'm waiting too." She has 12 kids and 28 granchildren. She says she thinks that when the time is right, it will happen to me. I hope she's right. All of the things I usually take photos of were not there yet for this year. I love to take photos of the flower exhibit and we missed that. I like to take photos of the sand and butter scultpures but they were just starting the sand sculputres. I think we went too early this year.

The most positive thing I can say is that since getting this new bladder, I've been out and about more now than in the past 7 years. I hope the good health continues on. I'd like to keep going out!

The New York State Fair

2006-08-25T05:19:00.000-07:00

My mom and I are planning on going to the NYS Fair today and tonight. Poeple who live here know how BIG of an event this is. I missed a few years due to my IC. My mother and I went last year and now a year later, after major recontstrcution/urethrectomy and Indiana Pouch surgery. I am attempting to go again. I had no idea that this year would bring what it did. We know where a secret bathroom is so I can have my privacy. It's raining today but I think we'll have fun anyway. I like to see everything that is there! This will be my first day out from start to end where I am on my feet. I've packed an emergency bag with extra medications, underware, stoma covers, band aids, saline, syringes, extra catheters, and everything else I could think of including an extra change in clothing in case of an accident. I hope we end up enjoying ourselves despite the rain. The fair is only 5 minutes from my house, which makes it very convenient.

Kara

2004 News Article, Drunk Driving Accident across from our Apartment

2006-08-21T16:04:00.000-07:00

CAR RAMS APARTMENT 3 IN RESIDENCE FOR DISABLED, DRIVER HURT

Marnie Eisenstadt Staff writer

A town of Onondaga man was charged with drunken driving Saturday after he drove his car off the road, over a sign, up a hill and through the living room of an Onondaga apartment occupied by people with physical and mental disabilities, authorities said.
"We couldn't get a speed because he never stepped on the brake," said Sgt. Tobias Shelley, of the Onondaga County Sheriff's Department. Two residents and their caretaker suffered minor injuries, as did the driver, Shelley said. Robert J. Gallagher, 52, was going west on McDonald Road in Onondaga when he drove off the road just before 11 a.m., Shelley said. Then he overcorrected and drove off the other side of the road, hitting a traffic sign, crossing a grassy area and driving through the fireplace of Apartment 486 at The Meadows at Westbrook, more than 300 feet from where he left the road. Shelley said Gallagher would not tell deputies where he was going, but was a little more than a mile from his home at 4331 November Lane.
The apartment Gallagher crashed into is rented by New York state for people with mental and physical disabilities. Two of the residents, Diane Leslie, 66, and Mora Green, 59, were treated at local hospitals, Shelley said. Patricia Adams, their caretaker, also had minor injuries.
Gallagher was treated at University Hospital for minor injuries, then turned over to deputies. In addition to the driving while intoxicated charge, he also was given a ticket accusing him of failing to keep right. Shelley said the Onondaga County District Attorney's Office will look into the case Monday.
Gray wooden siding and tufts of insulation littered the ground around the hole in the apartment wall. Only the rear of Gallagher's gold 2000 Chrysler 300 stuck out. Next to it a television sat, untouched, and a clock still kept time on the wall.
Kara Reese, who lives in the next building over, was sleeping when she heard the car slam through the wall.
After a stunned moment, "my second response was to throw my clothes on to see if someone needed help," she said.
She ran downstairs, across the green and into the apartment, where water was pouring out of the ceiling and broken glass was everywhere, she said. Reese first checked to see if any of the residents needed help.
Then she directed her attention to the car in the living room.
She jumped over the kitchen counter and looked into the car, but found no driver. Gallagher was outside the car, standing near the hole in the wall. Reese said he kept telling her he wanted to get back in the car because he needed to get his information from the glove compartment.

Illustration: PHOTODavid Lassman/Staff photographerONONDAGA COUNTY Sheriff's Department evidence technician Rob Krolltakes photographs of the scene Saturday morning. The rear of Robert J.Gallagher's car protrudes from the hole it made in the apartment inOnondaga. Color.David Lassman/Staff photographerTRACKS ON THE GRASS show the path of a car that struck this apartmentat The Meadows at Westbrook, off McDonald Road, in Onondaga. Deputiessaid Robert J. Gallagher, 52, of 4331 November Lane, Onondaga, was thedriver of the car. Scott Kelly, superintendent of the complex,examines the damage Saturday.MAP: 1. Car goes off road. 2. Car crashes into apartment. ThePost-Standard.

One IC Woman to Another

2006-08-20T16:43:00.000-07:00

I've just met a wonderful woman, mom and wife, who happens to also have IC. It was a great experience. She doesn't live that far from we do. She just graduated from college! What an accomplishment. I wanted to show a photo of us together from one IC Woman to Another! I look foward to spending time with her, her Husband and her Beatiful Daughter in the future. I don't get out a lot. This was worth going out, 100%. Happy Graduation Erika!

Kara

3 Month Recovery Mark (Bladder Reconstruction and Urethrectomy)

2006-08-17T17:15:00.000-07:00

I am at the 3 month mark for my bladder reconstuction/urethrectomy and creation of the Indiana Pouch. I have not posted to my journal for a few weeks due to some personal troubles that are not directly related to my bladder reconstruction. I thought I would post here to update anyone that is reading my journey. I have my first follow up in September for my Reconstuction (but I have to double check to make sure) If I still have the appointment, my mom and dad will be taking me to the Cape for a week and then onto NYC for a follow up with my Surgeon. Things have been going well. Knock on wood and be realisitic here. I am still recovering from the surgery. I am going to have to go into physical therapy if I want to live as close to a normal life as one in my situation can. My back muscles need some strengthening. They are weak. I am having trouble holding my whole weight up and it's causing some back distress. Other than that, at the moment, I am doing well. I've had a bit of a rash around my the outside of where my stoma covers go. We are still trying to find a treatment that makes it go away. Right now I am trying a heavy duty streriod cream. They have ruled out Yeast at the time being. I've been treating it for yeast for over a week and it's not responding. At the request of a very close friend of mine, I am going to look into seeing a Dermatologist in case the rash persists. The bladder is working well and holding up to over 1,000cc's every 4 hours, depending on how much I am drinking. The phantom urgency comes and goes with Ovulation but it's controllable with Lyrica and Keppra combined. I take the Keppra only when I need it, kind of like a PRN (as needed medication). I try to dwindle down to the Lyrica only, whenenver I can. I've been really tired due to stress and I've been really depressed, thus why I have not updated my journal. But I wanted to let anyone who is interested that I am so glad I did the Reconstuction and had the Indiana Pouch put in! I am so glad I am not abusing that Urethra every 20 minutes. It's been quite restful at times. I am happy and hope that this trend of good bladder health continues onward and upward! I am still kicking and going strong. I just need to get the rest of my life in order and I will be back up and running with things!

Happy with my surgery at this time! I think I am doing well for only being 3 months out. I just need to keep my chin up.

Kara

Clambake Photo

2006-08-14T09:37:00.000-07:00

Clambake Photos of 2006. To view a larger view of thes photos just double click on it.

Depression over life is getting to me.....

2006-08-11T09:41:00.000-07:00

We have our annual clam bake tomorrow. We see people there that we have not seen all year long. This year all of my good friends had babies and my Husband and I were trying way before they all did. And we still have not ever had a positive pregnancy test. I've never seen the stick turn blue. I went through several years of infertility and infertility treatments and they all failed and as it ended I got sicker with IC and had to have major surgery to get around it. Well another year comes around for us and I feel like I have accomplished not a darn thing in my life. No career, no house, no kids.....Tomorrow marks the first day I see all of my friends and their babies that don't live in our area. I am serious when I say they ALL had babies in the last year. I fell way behind. I've always wanted a little girl and still do. I am scared that I am going to say hello to all of them and then cry in front of them. I just want to say hello, say how beautiful they all are and then go into the bathroom and have a moment but I am afriad it won't just be one moment. I have put off seeing all of these people do to our infertilty and health issues. Plus nobody wants to hear my depressing health history. They and thier babies would all fall sound alseep. Anyway I am afraid there willl be lots of moments I may feel like crying. I just don't want anyone to see. I don't want them to think I am a selfish woman who only cares about herself. I want to celebrate thier babies and thier lives but it also hurts so bad. I wanted to come here just to let my feelings fall where they are right now. I've tried so hard to get myself well to get back into the swing of life but I just can't do it. I feel like such a failure and I may even cry about that. Everyone will be talking about thier kids, jobs, and houses, and what do I say? I am scared. I want to say and do the right things but my heart is in a different place. I've been falling deeper and deeper into depression over all of this. Clambake here we come! Ready or NOT!

2006-08-09T08:48:00.000-07:00

Today is a BAD day where my aresnal of meds are not working for me. It so frustrating. The scary ovulation is coming around any day and that is my weakest point onto the following two weeks and my period hits. For the most part these meds work but there are days where they don't and that is what having IC is all about. Some days are good and some days are horrendous and there is a lot of suffering. Today is one of those days for me. Nasty Hormones. But then again those nasty Hormones could give me that baby I have always wanted, so I have to take one over the other. I just pray for a better tomorrow when I have days like this. If this continues where I have more bad days than not, then I may have to go the low progesterone birth control route which is my last choice. I am rambling on here. Just wanted to report a bad day here and thanks for the support you all give as usual!

Kara

Phantom of the Urethra is there Inside my Mind!

2006-08-06T07:45:00.000-07:00

The Phantom Urgency coming around again for this month. I was hoping to take the Keppra for only the bad times of the month with phantom urgency but it looks as though I am going to have to take it all of the time. This frustrates me because I did not want to be on any medication except for the Lyrica. I thought I could get away with taking the Keppra just two weeks out of the month. It seems to work better when it's not taken every single day at the same dosage. But if I want the phantoms to go away, then I have to comply and take it when I need it and I needed it last night. I will be ovulating in one week exactly to this day and that is when I need the Keppra the most. It's all trial and error anyway at this point because not that many people are familiar with Phantom Urgency/Pain in the urethral area. I guess I will have to take it day by day and month by month and go from there. I am trying to avoid doing the low dose of progestrone because it's really birth control and I've had really bad luck with that in the past, plus someday I want to get pregnant and the birth control is what had stopped me from ovulating completeley and what led to having to take fertilty drugs in the first place. Which led to me having to have my urethra removed so you can see why I am trying to avoid trying the low dose of progesterone each month. I guess I just want a future someday and feel that the Keppra and Lyrica are the lesser of the two evils. Unfortunately the Keppra makes me sooooooooooooo tired, I don't have the desire I had before to go out and do anything.One step at a time, one day at a time!

Positive for today: At least the Keppra and Lyrica work together to take away the phantom pain!I hope it stays that way!

Kara

A Forever Friend

2006-08-05T20:19:00.000-07:00

"A FOREVER FRIEND"© Suzin Polish Schwartz or LaurieAnn Kelly

Sometimes in life, you find a special friend; Someone who changes your life just by being part of it. Someone who makes you laugh until you can't stop; Someone who makes you believe that there really is good in the world. Someone who convinces you that there really is an unlocked door just waiting for you to open it. This is Forever Friendship. When you're down, and the world seems dark and empty, Your forever friend lifts you up in spirit and makes that dark and empty world suddenly seem bright and full. Your forever friend gets you through the hard times, the sad times, and the confused times. If you turn and walk away, your forever friend follows. If you lose your way, your forever friend guides you and cheers you on. Your forever friend holds your hand and tells you that everything is going to be okay. And if you find such a friend, you feel happy and complete, because you need not worry. You have a forever friend for life, and forever has no end.

I'm glad to be home and looking foward to walking my property.

2006-08-04T11:19:00.000-07:00

This is the waterfall a few steps from my house. It's just a walk away and there is a Gazebo right by it so you can take a book and a relcyning lounge chair and read all day. I love being by the water and this is the closest I can get and still be home. I just need to get better to get to my waterfall. I am glad to be out of that crazy hospital and home. I am still not feeling 100% yet but I pray that I will soon and can go back to the point of taking walks and gonig out and taking pictures. I want to start living and I was just about to and then BOOM, I got a virus! I want to live up, not up and down. I want to have a house and kids. I want to live pain free! I just can't wait unti this recovery period is over. It's been 3 months 9 more to go and hopefully I will be on the up and up! I am trying to think positive here.

Kara

My hormones are coming down.

2006-07-26T05:18:00.000-07:00

My hormones are coming down and I've been able to cut back on they Keppra by half. While I am not thrilled about getting a period, I am certainly glad to get rid of that horrendous phantom urgency. I think it's a good sign that it at least waves in and out with the hormones at least in isn't steady so I know it's not permanent. Over the next week I'm sure I will have a few bad days but I will get through it with the help of the Lyrica and the Keppra with hope. I coud not sleep last night but then again I never can the night before the period. I hope when it's over I get at least one good week to enjoy myself before having to take the extra Lyrica that makes me sleepy for two weeks. I will see how long I can go doing this and then decide if it's more worth it to try the low dose progesterone for the month as my OBGYN had suggested if all else failed. But so far this month was doable with that meication combo. I am learning to be good at self-cathing and getting the hang of it. I keep forgetting to go and sometimes have to set my cell phone alarm clock to remind me as to not get an infection. I'm going to look for a good book on my ipod to pass my day. Just an update!

Kara

Having a few bad days due to too much activity and hormones!

2006-07-24T12:03:00.000-07:00

I am having a few bad days in the midst of my good week. My period is due any day now and I am feeling the phantom urges once again. I pray that this goes away once the period comes and goes. I was getting excited and starting to celebrate my good week. Hopoefully this will be just a minor setback and just that "a few bad days" they are bound to pop in on me. It's just so hard when the come unnanounced. The only thing I can do is stay in bed and not move. Taking more medication does not help. My phantom pain is just being spiked by some overactivity on Saturday (walking to ice cream) and an impending period. I just needed to vent my feelings for yesterday and today so I can appreicate the days when I feel great! This is a way for me to look back and say, "Oh yeah, I remember why that happened and what to do to make it better." The whole reason for writing this journal was to chronicle the good, bad, and ugly so others who have this surgry know that they are not alone and that some things are just normal in the recovery process.

Hang in there Kara, it will pass!

I am tube free! That is a BEAAUTIFUL thing!

2006-07-20T13:36:00.000-07:00

Today is a little over 3 months after my surgery. I am happy to say that I am catheter/tube free! No more tubes or bags hanging off of me. It's a beautiful site. I can wear all of my normal summer clothes now. No more skirts and empire wasted shirts. We've stumbled across a medication combo that seems to be working for the phantom urgency. We are using Keppra and Lyrica together. I am praying and crossing my fingers that this keeps on working and I can start my life again. I would like to start walking and taking pictures and listening to books on my Ipod out on my balcony in my bathing suit. For the moment I am a bit tired from the Keppra but it's worth not having the severe urgency eating at me every minute! I guess if Keppra and Lyrica are helping then that must mean that it is Neuropathic pain which is good because it may go away in several months to a year. I am very happy right now. I am cautious (still worry about the urgency) but I am happy! After all of the sad and depressing things I post, I wanted to celebrate something positive to my recovery. I just wanted to report a happy day!
Positives for today: Catheters are out! Medication Combo keeping me comfortable for the moment. I can wear my clothes. I feel like a woman!

CSI Miami's Calleigh Duquesne is another woman of inspiration to me.

2006-07-19T17:34:00.000-07:00

This is Emily Proctor. She is the Sourthern Bell that plays Calleigh Duquesne on CSI Miami.

"She learned to master a gun, that a woman can do everything a man can, and that protecting justice was the highest call of all. Protecting justice became the call of her life. her knowledge of firearms gained her the reputation as the "bullet girl," and she was soon asked to join their crime lab. Not long after that, her boss received a call from an old friend in Miami, Horatio Caine. Miami-Dade was looking for a ballistics expert."

Calleigh Duquesne on CSI Miami is another woman that inspires me in life. She is smart, intelligent, and absolutely beautiful.

The name of my car and one of my favorite women characters.

2006-07-19T17:08:00.000-07:00

From CSI NY this description of Stella is why she is one of my favorite characters.

"Detective Stella Bonasera is half Greek, half Italian and all New York. She speaks her mind and does not back away from confrontation. Stella’s fierce independence and unflinching character led her to join the NYPD. To fellow officers, she is the Statue of Liberty, a woman standing tall with her head held high. These qualities, along with her intelligence, brashness and determination, earned her a coveted spot as a CSI NY alongside Mac Taylor."

I have named my car Stella because my car is much the same as she is!

Surgery is Over. Now I can REST!

2006-07-18T20:10:00.000-07:00

It was a long day and I am 100% exaughsted. The morning started out scary, I had an allergic reaction to something in my Saline Solution and could not breathe. Theyn figured out that I must be allergic to one of the preservatves in it. Allen was with me and the nursing team seemed to be right on the ball and stopped it quick. They gave me a different type of Saline after that and I did fine. The surgery went well. The anesthesiologist was so nice and helpful. He told Allen and I that he felt really bad about what happened in NYC and that he would personally see to it that while in his care, it wouldn't happen. It went smooth and the surgery went as planned. I didn't wake up and I don't remember a thing and I didn't feel a thing. There were calcifications around the catheter and that is why it would not come out. My doctor did a good job. I have catheter in my stoma for a few days and a bag to collect the urine. This way it will ensure that the hole on the suprapubic side will close up nicely and quick. I am so relieved that it's over. I came home and slept for hours. Some of my fear is down but my guard will always be up. The foley that is in my stoma, I can take out when the suprapubic hole is closed over. When I had my first cystectomy it took two days. I hope it's the same for this one.
Now I can REST!

IC and what it does to us!

2006-07-17T08:49:00.000-07:00

I"ve taken to this new singer, Natasha Bedingfield. She sings this song called "Wild Horses" and it reminds me of how I feel about what IC has done to me and how I want to be free.

Natasha Bedingfield, "Wild Horses"

"I feel these 4 walls closing inMy face up against the glassIm looking out... hmmIs this my life im wonderingIt happened so fast How do I turn this thing aroundIs this the bed I chose to makeIts greener pastures i'm thinking about hmmWide open spaces far awayAll I want is the wind in my hairTo face the fear but, not feel scared. wild horses I want to be like uThrowing caution to the windI'll run free tooWish I could recklessly love, like im longing tooRun with the wild horses, run with the wild horses! I see the girl I wanna beRiding bare back, care free along the shoreIf only that someone was meJumpin head first headlong without a thoughtTo act and damn the consequence I wish it could be that easyBut fear surrounds me like a fenceI wanna break freee ee yeah ohhAll I want is the wind in my hairTo face the fear but, not feel scared. wild horses I want to be like uThrowing caution to the windI'll run free tooWish I could recklessly love, like im longing tooI wanna run with the wild horses, run with the wild horses! I wanna run too."

Hormone Nightmare and Phantom Urgency!

2006-07-16T07:58:00.000-07:00

I'm in the two week stretch of waiting for my progesterone to go back down. It will be after I get period. I wanted to say something to anyone who is closley following my frustrating story. After my reconstruction, my surgeon pulled me off of most of my medication so we could see if his surgery was successful. One of the meds he took me off of was the Keppra that had helped me awhile back, several months ago when I was in the hospital to have an epidural put in because of the whole Ovulation and Nightmare that follows Ovulating deal. Well I was at my wits end on Thursday because the phantom urgency was so bad, I just wanted to go back to the hospital for another epidural. I had a full bottle of Keppra, called my Pain Management Specialist and asked if I could take it just for these two weeks and then stop it after the high progesterone period ended. I've been trying it and getting a bit of relief, not as much as I would like and not enough to get me doing chores around the house or going out but enough to keep me comfortable. So I am taking right now, Lyrica 150mg 3x a day, Keppra 1000mg 2x a day, Klonopin 1 mg at bedtime, and Iderol (for heart palpitations). The Keppra seems to be helping for now, I just hope it doesn't stop working after it has built up into my system. Maybe two weeks will be just the trick. I didn't want to have to take any more pills but what can you do when you are suffering so badly and there is no where else to turn and hopefully it will just be temporary. Trial and error with these things. One hour at a time. I am really trying here to make it through this.
Kara

I had an infection for almost 3 months. The results came back.

2006-07-15T10:06:00.000-07:00

For 3 months, I've had a Klepsiella all this time and based on my tries to get urine cultures done this whole time, the Urologists would not culture or give me any antibiotics. Even though I had two catheters in me for 2 months and one left in catheter for 3 months. Even though I told them I knew I had an infection from day one, they didn't listen or care. My urine was full of junk and smelled so foul and it was green and came out like syrup. Finally I decided to go to my Primary Care Doctor to ask him to please do a culture and to put me on an antibiotic while we waited because I was getting sick to my stomach, had severe back pain, and a bad headache. There were also huge chunks of blood coming out of my Suprapubic. He agreed with me that it should have been taken care of sooner and he was sorry I was treated that way by the Urology team. The results came back with the Klepsiella infection count over 100,000. I am going to stay on the Leavaquin until my surgery on Tuesday. I feel better in the sense that I am not sick to my stomach, no more back pain, and no headache. The phantom urgency is still spiked due to ovulation so I will have to wait 2 weeks until my period comes to get some relief and we'll go from there. One month at a time. This is what can happen during the recovery time of 6 months to a year when dealing with bladder removal. You have to be ready for anything. It just sucks when doctors don't listen to their patients.

Kara

Revenge of the Hormones #2

2006-07-13T14:34:00.000-07:00

I talked with my OGYN today.She says since we think I already Ovulated or am about to this month. I have to wait until next month to take the low level of progesterone. I mentioned that if progesterone is the hormone that irritates my urethral area, then why would giving me progesterone make it better. She explained that the high level of of progesteone that comes right after Ovulation is what irritates my urethral area. She explained that every day we all have a low level of progesterone running through our bodies. Her goal is to give me this low level not to disturb my whole month but to stop the ovulating so that a high level of progesterone doesn't spike a flare. I am scared to try it but they are pills so at any time I try taking them, if I get urethral symptoms, then I can just stop it and hopefully she will come up with another plan.I'm just trying to pull out as many tools as I can to make my recovery more comfortable. I am so sick of this! The next two weeks are going to be aweful. I have to suffer with it. It feels so raw and exposed, even though it's gone. I guess if this is the only thing that I ended up with after such major surgery than I should be greatful.

Kara

UGH! Celiac Disease

2006-07-13T09:14:00.000-07:00

After I had my reconstruction. I developed Celiac Disease. It's basically an allergy to anything that has wheat in it which is just about everything. Bread, Pasta, and much, much more. My mom developed it at age 52 after having a Hysterectomy. She had to give up all of her very favorite foods. The only things we can eat are meats, rice, potatoes, salad, milk, and that's all I can think of right now. Celiac Disease is Hereditary. This confirms to me that IC is autoimmune and that other diseases go with it and that they could keep coming over the years.
The technical information on this disease is as follows: "A lifelong autoimmune intestinal disorder, found in individuals who are genetically susceptible. Damage to the mucosal surface of the small intestine is caused by an immunologically toxic reaction to the ingestion of gluten and interferes with the absorption of nutrients. Celiac Disease (CD) is unique in that a specific food component, gluten, has been identified as the trigger. Gluten is the common name for the offending proteins in specific cereal grains that are harmful to persons with CD. These proteins are found in all forms of wheat (including durum, semolina, spelt, kamut, einkorn, and faro), and related grains, rye, barley, and triticale and must be eliminated. Celiac Disease may appear at any time in a person's life. The disease can be triggered for the first time after [I]surgery[/I], viral infection, severe emotional stress, pregnancy or childbirth. "
They symptoms include:
abdominal cramping, intestinal gas, distention and bloating chronic diarrhea or constipation (or both) steatorrhea -- fatty stools anemia - unexplained, due to folate, B12, B6, or iron deficiency (or all) weight loss with large appetite, or weight gain
dental enamel defects osteopenia, osteoporosis bone or Joint pain fatigue, weakness and lack of energy infertility - male/female depression aphthous ulcers
Just wondering if anyone else has this too or suspects they have it. As soon as I stopped eating breads and pastas and everything on the list not to eat, I started to feel better. I hate the diet but what else can I do. I don't want to damage my intestines. Thanks to my mom we caught it right away.

Kara

Revenge of the Hormones and Phantom of the Urethra!

2006-07-12T14:36:00.000-07:00

I'm back at the Ovulation Time of the month and like last month my hormones are just going to make the next two weeks REALLY BAD. This time of the month makes my phantom urgency intolerable. I want to SCREEEEEEEEEEEEEEEEEEM!!!!!!!!!!It's been one day and I already can't bear it. I guess I am going to have to call my OBGYN so next month this may not happen. She mentioned giving me a low dose of progesterone so that I won't ovulate and thus don't have to deal with the flare every month. I wonder if she could give it to me now...Hmmmmm I may call tomorrow to ask.

I was afraid this would happen. I was afraid I would have the surgery to remove the urethra and then it would not make a difference and my hormones would still drown me every month. My fears were not unfounded because it's happening! The Lyrica is not touching the pain of the urgency and niether is the lidocane patch. I am at a loss once again. I knew what I was asking for with this surgery but I didn't know that my hormones would be such a HUGE issue. I hope this is just part of the recovery and it goes away with time but GOD this is so much to handle.

I just want to have a normal life, work, play, have children, laugh and love.

I just want a rest and some peace.

Why, Why, Why,

I am miserable.............

Kara

Feeling sick

2006-07-11T08:36:00.000-07:00

I still have this suprapubic catheter. It's been in for 2 and 1/2 months now. It throws out green mucous but my local urologist told me that this was normal. So I have just ignored it and clean it twice a day. I went to my sister's graduation/birthday party this weekend. I did all of the packing and the driving. I stayed up until 3 AM and then got up Sunday at 8 AM and started to help clean things up because the party was wild and slightly out of control. I did not drink at this party, just stayed up late. I woke up today and had a slight stomach ache. I have not changed any medications nor have I eaten anything out of the ordinary. I started having diarhea mid day and had to take some immodium. Then I layed down and gradually started to feel worse and worse. I don't have a fever. I don't get fevers, even with the worst infections. My urine does not seem odd, smelly, or green. I am going to call my Primary Care Doctor tomorrow because this local Urologist seems to not care about things. I've had one urine culture this whole 2 and 1/2 almost 3 months now and it was because I had to BEG for it! I think it's time to have another one! And some bloodwork. And possibly more. The suprapubic is irritated and hurts to touch it. I wonder if it's infected inside of my bladder? I would go to the ER but they NEVER actually DO the URINE CULTURE so why go? I've asked them every single time to do the culture and they just forget or don't do it. I am afraid to wait until tomorrow but what to do. I guess if I continue to get sick I will call the local urologist and see if he can order the ER to do a urine culture if I go in for it. I am not thinking straight.....I just don't know how to handle this but to call the doctors and ask them what they want me to do. This catheter should have been out LONG ago! And when they could not get it out they should have given me an antibiotic after poking me with all of those things and pulling on the catheter and trying to pull it out. It just seems wrong to me that I have to wait until July 18th to have this out when it won't take more than 10 minutes to do.

Today: My Primary Care Doc is all booked up today but the secretary thought it best that I see him and not one of the Nurse Practioners based on my symptoms and the complexity of the situation. They are suppoed to call me back to see if they can squeeze me in with him today. They didn't want me to wait until tomorrow. It's probably nothing as usual but I want to be safe about this. My Husband is worried because I was up all night with stomach pains and back pain. I had to take a vicoden for the back pain it was so bad. I don't usually take narcotics now unless I absolutely have to. So that shows how much I was suffering. I hope they can get me in. I've prepared a urine sample already. It's in the fridge to keep from growing anything that isn't really there. They can't get me in until 4pm which means my urine sample won't go out until tomorrow. One more day to wait. Grrrrrrrrrrrr. I don't understand why I can't drop off the urine sample now and then go to my appt at 4 then the urine will at least have gone out.

Kara

Going to my monthly Pain Management Appointment Today.

2006-07-10T05:52:00.000-07:00

Today I am going to my Pain Management Appointment. I am going to tell my doctor that the Lyrica is working to a degree. It takes the edge off but does not work for the real bad days. I am, at the suggestion of one of my girlfriends, going to ask for Lidocane Patches as an add on to the Lyrica and see if they help any. I am still waiting for my surgery on the 18th of July to have the catheter removed from my abdomen. I am hoping that will help some. The less medication the better. I will write more when I get back.

Went to the Appointment. They were super nice today! I am able to try the Lidocane Patches, they gave me enough to last 2 months worth of samples. I met with a new Nurse Practitioner who was really nice. They are going to up my Lyrica so right before and after I ovulate, I can take an extra 150mg for the two weeks that I may suffer. We are going month by month. If that doesn't work they told me just to give them a call. They seemed today to really WANT to work with me. The nurse practioner that will be taking on my case from now on said that she was really excited to meet me. She says most of her patients aren't as proactive and that it makes it easier for her to help me. I told her I wanted to start a support group for IC patients in my area because there really isn't one that I know of. She said that she can help me do that when I am ready.

It was a good day regarding doctors. There are not many of those!

Kara

This week

2006-07-07T18:08:00.000-07:00

I've been busy this week doing some small chores around the house and running some small errands. This is good thing because before I could not do anything but stay in bed and suffer. On my good days, I am going to try to get up and use them to their fullest. On the bad days, I will take care of myself like someone who is still recovering from reconstruction.I am waiting for my surgery on July 18th to have my Suprapubic catheter removed, still learning the ropes of catheterizing myself. I'm trying to keep busy, praying that the phantom urgency will eventually go away. I have dreams of the future.

The Phantom of my Urethra is there, inside my mind!

2006-07-06T08:26:00.000-07:00

The PHANTOM of the urethra is there, inside my mind!
It comes when it feels like it.
I am having a rough day and last night with the phantom urgency. I wish I knew what triggered it and how to help it but I don't. And no one else does either. I wish it would go away.

Kara

Do you belive in Ghosts and Spirits?

2006-07-05T14:58:00.000-07:00

While on our trip we encountered some strange things. In the bathroom through my camera lens I spotted a round ball of light. A BIG one! So I snapped a photo of it and when we looked closer we could see 6 of them. I was trying to get a good shot of the bathroom for us IC folks. If you click on the photo you can view a close up of it and maybe you can see the other balls of light. I took maybe 6 or so photos but this one is odd. They appear in other photos around the room and the mansion and I took over 100 photos. They do not appear anywhere outside of the mansion nor do they appear in the other photos I took and have taken around my house. We could not start our fire in our room. We had to have maitenance come and it took them over 2 hours to get it started. They could not figure out what was wrong. I tried to start one of the fires in the library of the mansion and it would not start either but when I went downstairs to the living room, I was able to start that one. We went to sleep. Sometime in the middle of the night, I woke up screaming really loud. My Husband was sitting upright snapping his fingers as loud and fast as he could. I asked him what he was doing and he said, "Something in my dream told me to sit up and snap my fingers really loud and fast, so I did." Then we went back to sleep. The next morning I was trying to dry my hair and the hair dryer just stopped working. I reset it a few times and tried a few different plugs but still nothing. That evening we were going out to eat and I went to use try the dryer again and it worked this time in the same outlet that I originally had it in. The following night we lit some candles later because we could not start the fire once again but this time the piolot light was on. My Husband wanted to make me a "fire" of candles. One of them right in the middle of the row just blew out and it wasn't sinking into the wax. The other candles remained lit. We joked around that this "ghost" must not have liked anything that had to do with heat. I guess it could not be in the room with us unless it was cold. Some skeptics say these are just dust particles in our pictures but I'm not so sure. I know I have dust in my house but it doesn't show up on the camera. I believe in spirits. I think this one was just playing with us. I did not get a bad feeling when I was in the room or the rest of the mansion. The Belhurst castle is rumored to really be huanted though. "The ghost of Belhurst Castle is that of a beautiful Italian opera singer, who fled from Spain with her lover. One night the couple raced to their secret tunnel. Just when within safety the tunnel collapsed killing the opera singer. Over the years, dozens of guests have reported seeing a woman in white standing silently on the front lawn in the middle of the night. " I have a photo of the lady that owned and put up the castle. See what you think. I do believe in some of this stuff. My Husband is on the fence about it. We'll see what happens when we go back next year. Needless to say, it takes my mind off of the harsher things in my life. It's a distraction.

Kara

HOPE

2006-07-03T11:18:00.000-07:00

I saw my OBGYN today and she said that if the phantom urgency goes away with time and it isn't bothered by my own natural hormones then I have a good future ahead of me. She says that reproductively, I am looking healthy and young despite the bladder removal and reconstruction. She said that should I become pregnant by a miracle, we would just let nature take it's course, NO FERTILITY DRUGS, that it's ok to carry a baby. I see my surgeon in September and I will confirm this with him as well to make sure.

So some day after I heal and the phantoms are gone, maybe, just maybe I will actually have a baby. I am only 30, so I have lots of time to heal and decide.

For all reasons possible I just hope the phantom urgency goes away with time and I don't have to take the Lyrica for ever. I just want to take it for a short time maybe 6 months to a year and then I will try to go off of it and see if the phantoms have gone away.
We may just let God take this into his own hands and if it's meant to be it will happen and if not, we will follow another path in life.

Good News for Today even if we choose not to go down this road. Just some Good News after all of the Misery I've gone through over the past 7 years.

It's good to have some sort of HOPE in life and I've had none for a VERY LONG TIME!

Positives for Today: Phantom Urgency is down, Catheterizing is going well, Surgery Date is set for July 18th to have the suprapubic catheter removed and my OBGYN is on the same page as I am with how we are going to proceed. If I am having trouble with the Ovulation again this month, all I have to do is call her and she'll stop it with a low dose of progesterone and if that doesn't worik, she'll try somthing else.

We had a Wonderful Time!

2006-07-01T20:32:00.000-07:00

We are back from our Anniversary Vacation. It was everything we hoped for and more. My bladder gave me a few good days and we ran with them. We did all of the things we wanted to without the thought of my bladder. We got to use the hottub and fireplace inside of our room. It was restful and relaxing. I am thankful for a few good days.

To view a close up of the photo, just click on it.

2006-06-29T08:07:00.000-07:00

Today is our 5 year wedding Anniversary and with all of the things we've had to face, I'm happy to be here Today! We made it together. My Husband and I have actually been together for 15 years now. We started dating in high school. We were class couple our Senior Year. I just wanted to share the happienss I feel for making it this far. We are as much in love the first time we said it to each other if not more so today!

May the Celebration begin!

Kara and Allen

2006-06-29T07:50:00.000-07:00

I HAVE TO GO IN FOR MORE SURGERY........

2006-06-27T17:35:00.000-07:00

I HAVE TO GO IN FOR MORE SURGERY!

I went to Dr. R today. I’ve been recording my output and it’s been gravitating toward the stoma as the last week has gone by. The SPT has been putting out less and less which I was happy about. I went to the office all ready to have the SPT removed and to have the wafer and external bag for a few days. I even went to the office with a wafer already on and bag ready to go. BUT we ran into a problem with the SupraPubicTube. The balloon would not deflate enough to come out. Dr. R tried slowly pushing and pulling saline in and out of the balloon. He said he thought he had gotten all of the saline out. He cut the balloon port but nothing happened. He pulled on the SPT until he thought he could see the balloon and then he poked a needle into my open wound, still nothing. Then he put a wire up into it and still nothing happened. He was on his way to surgery so I was left on the table in a bloody mess. They gave me nothing to clean myself up with. They both just left the nurse and the Doctor. Blood was running down my leg when I stood up and I was in pain from all of the pulling that was done. I was left to my own devices to clean up and get dressed. As you know I came prepared for anything so I had the supplies to take care of myself but I was left wondering why? Why did I have to do that all by myself with no help from a nurse at least. He thinks there could be calcifications around the opening making it impossible to come out, although I can feel the balloon with my fingers around the opening. It still feels inflated with something. Dr. R wants me to keep the SPT in for 2 more weeks, because he is going away for the 4th of July, and then he will have me put under anesthesia and cut it open a bit and take it out that way. I wanted him to do it as soon as tomorrow and forget about our first night at the mansion but his nurse said that he could not do it. I asked if it could be done at the end of the week and again the nurse said no. They want to keep me over night after they do this, so he wanted me to go off to the mansion and try to enjoy myself and then worry about it after our vacations. Easier said than done.

I’m a little upset about having to wait 2 more weeks but I will do it if I have to. I am REALLY upset about having to be put under again.

We are still going away this week to the mansion. My Husband says he thinks I am beautiful no matter what is hanging out of me.

I guess the day definetely did not go as planned. This is the world of medicine these days.

Kara

Be Your Own Advocate when it comes to your Health.

2006-06-27T08:15:00.000-07:00

I am going in to have my local doctor assess if I can have my Suprapubic Catheter taken out today. Oh how I want it out so bad. I want to be CATHETER FEE! Our anniversary is on Thursday. My Urine output is now mostly coming from the stoma with much manipuation of the 14fr catheter which I feel is too small for me. (My Surgeon in NY mentioned that I could use a 16fr if I wanted to but I want to double check with this local Urologist, so I don't damage the stoma tract, it may not have been meant to take that size on a regular basis.) I called my local Urologist to see how they want to do this and the nurse said she didn't know. Go figure, I am on my own to learn the ropes again! So I told her that the Suprapubic was supposedly coming out today and that the doctor was thinking about putiing a foley catheter into the stoma (so the Suprapubic hole does not leak as much and heals faster) and then I would have to wear the external bag again for a one to two days. This was the plan he made with me of last week. I asked the nurse if she wanted me to come to the office with a prepared wafer on, without the bag attached, so if he wants to take a urine sample while he's in there he can take a fresh one. And then we can put the bag on once the foley catheter is in place. The nurse said, Oh that's a good idea and a good plan. (I can't even imagine what it would be like if I didn't have any of my own supplies left or if I didn't call and were to show up with nothing, this office seems most unprepared) So that is how I am going with the wafer already on, bag, and any other supplies I may need while I am there. Oh and a change of clothing if needed. But I am hoping they will let me take my clothes off for this. They never pay attention to the urine that leaks out all over the place. I guess you really DO have to be your own advocate or else. It takes awhile to get the wafer in place and I'd rather be the one to do it than have a doctor/nurse who is not familiar with the way I like to have it put on. I have a certain method to my maddness when it comes to putting the wafer on and I KNOW the doctor and nurse would not do it the way I do and I'd have to re-do it when I get home and rip my skin off because I am so sensitive to the wafer adhesive and tape. I'd like to preserve my skin. I will also come with supplies to absorb any urine that may leak out of the Suprapubic hole. So I will go prepared and hopefuly come out with no suprapubic catheter, the external pouch and foley for 1 to 2 days, and then my Suprapubic hole will hopefully close up. I hope it works out similar to this. I am going to ask him if I can remove the foley since I've done it 10,000 times, so I don't have to go back into the city for another office visit but I understand if he wants to do it. I will also ask him if I can use a 16 fr catheter in my stoma when needed to drain all of the urine when the mucous happens to be too thick.

This teaches me some things: Always ask Questions, Always pay attention if you can, Always do your homework, Always be prepared for anything, All doctors do things differently, and Always be your own advocate when needed.

Keep on Going Kara!

Hormones and Phantom Urgency

2006-06-26T05:36:00.000-07:00

I hope today is an ok day. I am crossing my fingers. I am calling my OBGYN later today to schedule an appointment to see her. I think that some of this phantom pain has something to do with my hormones. When my progesterone level rises so does the phantom pain. That needs to stop somehow. Unfortunately birth control pills have progesterone in them, that's the main hormone in there. There is also estrogen which doesn't usually bother me too much. But there could be some sort of new pill out that may help me with this. My period is due any moment and the phantom urgency is low at the moment. As soon as my progesterone level dropped. The Phantom Urgency Dropped too. I don't know if and when it will come back. All I know is that I am going to try to enjoy the phantom free hours and be happy. It could also be that I've adjusted to the increase in the Lyrica. We'll never know for sure until the months go by and we see a pattern or not.

Positives for today: Phantom Urgency has been down. I am praying it stays that way. Most of my urine is coming out of the Stoma. My Husband is bringing home some chocolate. I have an appt with my OBGYN for next week. Took Care of some personal chores. Got to enjoy reading and taking a cat nap.

Kara

Explanatioin of Supplies Used After Bladder Removal

2006-06-25T16:03:00.000-07:00

The first photo measures urine output. It sits right on front of the toilet seat. It measures it in cc's. It's helpful when first starting out to make sure everything is ok.

The next photo shows Germicide to wash the catheters off and out with, next to that is Hygiene No Rinse Incontinence Wash and Odor Suppresant, KY Jelly, SurgiLube throw away, travel packets, which are just like KY Jelly, Skin Prep for people who have very sensitive skin to tapes and glues, Adhesive Remover, A Large 2 inch by 3 inch Band Aid (which I use right now to cover my stoma as I train my new bladder), A waterproof stoma cover, and a catheter plug.

The next photo is of several different types of catheters. There are two coude tipped catheters and the others are all straight tipped catheters. These are all size 14 french. But they come in many sizes. The next photo is of more catheters these are size 16 french. The first one is a straight, the one under that is a coude tipped catheter, and the last one is a 14 frech catheter, straight tip, which is what I am using now.

The next photo is of a Urinal that you can take traveling with you and an appliance cleanser that cleans and deoderizes your supplies.

The photo under that I accidently duplicated so there are two of them. This is a photo of a squeeze bottle that you can put warm water and soap in or just plain water or saline or whatever you may need it for. Next to that is a bottle of saline to irrigate catheters with. Next to that is the container that the saline goes into. At the bottom is a 60 cc Toomey Irrigation Syringe. This is what you irrigate with.

The next photo shows some of the external pouch supplies. There is a hand mirror so you can see at angles that your eyes can't easily reach. There are 3 different sizes of cloth tape. There is a package of Skin Prep and a package of Adhesive remover. There are two pairs of scissors, one cuts straight and one cuts in a circle so you can cut around some of your appliances. There is a stoma measuring tool next to the scissors. Above that is a drainage sponge which goes around wounds such as where the suprapubic catheter comes out. Next to that is a regular guaze pad which can be used for cleaning wounds as well as for absorption. Under that is a wafer which I explain in great detail in "how to take care of your dressings" Next to that is a Urostomy Pouch that catches the urine around a stoma.

At the bottom on the left is a leg bag which connects to the catheter and the urine drains into it. On the right is a nighttime drainage bag or what I call a bed bag. It attaches to the bottom of your bed and collects the urine from your catheters at night.

Supplies used after Bladder Removal

2006-06-25T15:40:00.000-07:00

To View these photos larger and closer you can just click on them and a larger photo will appear.

There is a section on the left hand side of this site that says ARCHIVES June 2006, July 2006. You can click there and see the older things I wrote.

A few hours of happiness!

2006-06-24T22:07:00.000-07:00

We had some close friends over to watch the fire works that go on right outside our balcony every time they do the Jazz Festival each year, the 25th of June. The fireworks display is better than any 4th of July fireworks I have ever seen. It's an hour long and it was beautiful. My mind was on the night and the fun we were having. My Husband and I cleaned our house top to bottom and I am so proud of it! It's so nice to have a clean house. For a few hours I felt happy and content. I think the distraction helped tremendously. My dad gave me a camera so I can start to take more pictures. I am so excited about that! It works with my computer!

Kara

Trying to Balance the Scale

2006-06-24T06:23:00.000-07:00

I'm trying to balance the weights so to speak regarding my Suprapubic (SPT) and Stoma. I have to have the majority of the urine come out of the Stoma side since that is what I will be using the get the urine output for the rest of my life. I just can't get it to happen. The SPT is a 20 french foley and the surgeon has me cathing with a 14 fr catheter. That would make sense why most of it is coming out of the SPT. When I had my neobladder I was never allowed to go below a 16 fr and when I had a foley in it had to be an 18 fr foley. There were two reasons for this, first my urethra was closing up and my doctor feared that if I used anything smaller than a 16, that it would just close off on me. Second I tend to have much more mucous than the average persoon even years after the surgery so in order to get all of it out I needed a larger catheter. So I am thinking the same would be true for this case too. The holes on the 14 fr are soooooooo small. My surgeon told me I could try a 16 way back when he was teaching me to catheterize but that was over a week ago. I don't want to use the 16 without permission from him or my local urologist because I don't want to create any damage. The tract may have been made to accomodate a certain size. But by staying with the 14 fr I am not getting enough out compared to the SPT side which is a 20 fr. I don't know what to do but wait until I see my local urologist on Tuesday and ask him if a 16 could be used on this new stoma and if so does he have any. My out put has basically been about 50/50, there are a few times I will get more out of the Stoma side but still a lot comes out of the SPT even after that. I have recorded all of it and I still am recording it. But until the scale weighs in favor of the stoma, I have to leave this damn SPT in for my anniversary.

Depression from increase in Medication

2006-06-23T14:57:00.000-07:00

I am suffering from major depression from the increase in this Lyrica. I hope it will go away with time. I've again, been in bed all day reading/sleeping. I originally wanted to go outside and take some pictures but it's overcast here and I just lacked the motivation. I feel just as depressed if not more so than I was before the reconstuction. It helpes to talk to others who are going through the same thing but I don't know of anyone who is going through the same thing, I have a therapist and a psychiatrist that I've been working with for 4 years. The problem with me is that I can't take any antidepressants because they bother my new bladder. They cause an increase in phantom urgency. So I am kind of stuck as to what to do about the depression but to just talk about it with friends and family. The next time I see my Pain Management Specialist, I will tell her what is happening and see if there is anything we can do about it at her office. Maybe it's something I will have to live with if it ends up helping me in the long run.

I will try to list a few positives to my day: Early this morning, I drove my car, I went to the drug store, I bought a disposable digital camera.

Looking for the Positives Today

2006-06-23T06:55:00.000-07:00

Today us a new day. I am going to try to look at everything positive that happens. I can think of one now. I slept well. I went 6 hours without needed to use the bathroom. Another thing is that my Husband is wonderful and works so hard for the both of us to live as nice a life as we can. Our wedding vows were a little different than the traditional ones. Since this is a positve thing in my life and it's in use, I'd like to share it with you.

"As We face the future

together,

I promise to stand by your side.

I promise to share and support

your hopes, dreams,

and goals,

I vow to be there

for you always.

When you fall,

I will catch you.

When you cry.

I will comfort you.

When you laugh,

I will share your joy.

Everything I am and

everything I have

is yours.

From this moment forth

and for eternity.

Kara and Allen June 29, 2001

We have lived these vows every single day since we've gotten married. Next week it will be 5 years and we are celebrating by going to a mansion on a lake for 2 nights. The photo of the Mansion is on the Left.I pray that my bladder gets itself into shape before then.

My Husband deserves the best!

Kara

A Day In Bed

2006-06-22T13:28:00.000-07:00

The Phantom Urgency is breaking me!

I've spent the entire day moving from room to room of my house crying and sleeping. My Therapist called and spoke to me for 2 minutes and said she would talk to a doctor she knows that was a famous Urologist. I for one, think they are all useless, except for my two Surgeons. My Granmother came to deliver her weekly portion of food to us since I can't cook. We have enough for 2 weeks. She handed me $50.00 and told me to use it toward a new camera so I could start taking some photos and have some fun. I immediately started crying. She hugged me and told me we would get through this somehow. My Husband says if I am weak he will be strong enough for the two of us. My mom almost came out here to get me from an hour away but we decided that it would be better for me to stay home since all of the reality shows are starting this week and Allen loves to watch them with me and my Dad won't watch them and then I would be stuck watching re-runs and old movies and my mind would just wander to all of the bad spots it has been going to. So we all decided for now it's better for me to stay home. My dad is giving me a digital camera that he bought last year to see if it will work with my computer. So sometime this weekend I will try to go out and stay with them, maybe Sunday because there are fireworks on the 24th or 25th here at my house over my balcony. I'd love to have a camera for that! So after my Granmother left, I started crying again and crawled back into bed and here I am. This is where I spent 95% of my time.

Kara

I am feeling real down

2006-06-21T20:19:00.000-07:00

My new dosage of Lyrica is not doing anything, in fact I am just getting worse. The urgency is unbearble. I've tried just about every pain med out there in fact my pain management doctor says after Lyrica there is nothing left to try because I've tried it all. Narcotics make it worse and there is no more surgery left. It feels like I have an infection but of course they don't treat it unless you have a fever or have symptoms. Whatever they consider symptoms to be, I disagree with. My urine smells like the common ecoli infection I used to get with my Neobladder and if left untreated it could spread to my Kidneys. There is nothing left to try and I feel like it's over and this is the way the rest of my life will be. I am sad and overwhelmed with fear. I had to have the surgery because my urethra was non-functioning but I didn't think the urgency would be this aweful. I guess its some sort of nerve damage. There is no way to fix that. Or the fertility drugs I took just reeked havoc on my body and are still doing so. There is no way to fix that either. Par of the reason I went into this surgery was in the hope that it would help the urgency because we all thought it was coming from the damaged urethra. I guess we were all wrong.

Kara

Setbacks during recovery

2006-06-20T06:27:00.000-07:00

When dealing with trying new medications it can be like a roller coaster at first to find the right dosage but I will get there for sure with time!

I knew I spoke too soon about the Lyrica working for the phantom urgency. It came back last night with a vengance! I was devastated and confused. I don't know what to do now! My heart is so upset about this.I should not have opened my darn MOUTH! Every single time I say something is working it backfires twofold in my face a few days later! I feel like never talking about anything again for fear of jinxing it!WHY IS THIS HAPPENING TO ME? CAN I CATCH A BREAK SOMEWHERE? I JUST WANT TO LIVE LIFE IS ALL? IS THAT TOO MUCH TO ASK FOR? There are several factors that may be going on here that I am thinking could be the cause of the phantom urges attacking me last night and today. I will list them and bring them all to my local urologist today:

1. I still have a suprapubic catheter in there with a 30cc balloon in there which is making it hard for me to get all of the urine out through the stomawhich leaves residual urine in there and thus there could be an infection brewing (The suprapubic has been in there with no change in 2 months, that's a LONG time) I want them to do a urine culture no matter what today!

(My 5 year wedding anniversay is next week and we are going to stay in a mansion for 2 nights and I want no infection present then)

2. My period is on it's way and ovulation has always been my weekness for two weeks before my period.

3.I had vaginal surgery with my reconstuction and if it's swollen in there, it may be causing swelling in other areas such as where my urethra used to be

4.Learning how to catheterize the stoma may be causing an upset in there an irritation....

5. I may need an increase on the Lyrica for the weeks followng ovulation and the days right before my period. (Just put in a call to my Pain Management Doctor)

I am trying hard to figure this all out since all of my doctors just shake their heads and say they don't know what is happening!!!!!!!!!!!I feel like not speaking about my treatments until I know for sure if they are really working. And then it can still backfire months or years later.....I am so tired of searching for the answers to this disease. If I don't look for the answers, the doctors just say they can't help. So I have to come up with what could be wrong. I don't remember going to med school? But I have to be my own advocate or nothing will happen at all. If I don't fight for my health, no one will. That's how the medical community is with my condition. They just shove me of to another doctor or shove a medication at me and then tell me they can't help me anymore, so basically I have to suffer for the rest of my life if I dont look for the answers myself. Nice huh?I am sorry I spoke too soon about my relief with the Lyrica!

Up and Down on the roller coaster we continue to go.........

The pain management doctor has increased my Lyrica to 150 mg 2x a day and then in 3 days if there is no improvement I can go up to 150mg 3x a day.

I hope this works for me. Praying for another miracle.

If I can just get this phantom urge under control. I will be functioning well.

This is called recovery and I am right in the middle of it and bound to have set backs. I am not superwoman, although I would love to be!For those of you who know I am fighting to have life back, please know I am trying my best to make it happen.

Postives for Today: New dosage of Lyrica helping already. I pray that it continues. My pain management doc called me right back this morning. The cathing is going as well as it can be for now. The Suprapubic comes out next week before my anniversary if all goes well. I dropped of a urine culture to make sure there is no infection. I hope they processs it accordingly or I will have to drop of another sample with my primary care doc who will always do a culture for me no matter what.I am getting there. Slowly but as steadily as can be for now. We all heal differently and can't compare bodies. We can share experiences and that is what I strive to do. Some people recover with no problems and others have troubles from time to time. That's what makes us all unique

Kara

HOME but not quite settled yet.....

2006-06-18T19:56:00.000-07:00

I'm back home and learning the cathing routine. Unfortunately I think I may have an infection, so I am going to drop off a urine sample tomorrow. I go to my local Urologist on Tuesday. The strange thing is that one side of my pouch drains the side with the stoma, only so far and then I have to pull the rest out with a syringe on the suprapubic side. We don't know what is causing this. There is a 30cc balloon in there that may be obstucting me from getting urine out from the other side. My Husband is an engineer and was trying to figure out the anatomy and physics behind what is occuring. It makes sense but I want a doctor to reassure us of what could be the problem. I just don't want to rely on the left side which is only temporary when I am needing the right side to live off of. I won't have two outputs just the one. It seems like it is so BIG in there! I am going to talk to my Surgeon this week and see what he thinks and see what the local Urologist thinks.

Postives for Today:Lyrica is working on the phantom urgency today, I've gone 4 hours between cathing, I'm getting urine out slowly, I'm finding my way. I've got wonderful support all around me. I went for a walk tonight around our property. We heard the wildlife around us. It was exciting. The first walk I've taken with my Husband in 4 years.

One foot in front of the other....Keep Going.

Kara

Still in NY

2006-06-17T06:13:00.001-07:00

The ride to NY the previous evening was horrid. The phantom urgency was on the prowl and did not like the car ride at all. I was suffering bad when we pulled into the driveway. Only day two of the Lyrica at that point. 75 mg 2x a day and a decrease in Nuerontin by 800mg a day, so I am only taking it twice a day now.

I am still in NY. I will go back home around 4pm. We are trying to relax today and take it easy. Yesterday, I had my Doctor's Appointment to have the Urostomy tube come out. That was the easy part. My doctor was the one to teach me how to self catheterize. He went as slow as I needed him to and did not rush me. First he put 240 or so cc's of saline into my suprapubic tube (can't exactly remember the amount he put in) I told him when it was getting full and starting to hurt and then he stopped. Then he removed the Urostomy tube which went smoothly. Then he put lots of lubrication on the stoma itself and on the catheters that he wanted to try. He brought several different ones in to try out. First we tried it with me laying down. We tried two silicone red rubber catheters a straight tip and a coude tip, they went in, but it was very painfuln and nothing would come out, no saline or urine. We switched me to a sitting position.Then we tried an easy catheter which was not too hard but not soft either. It went in much easier, still hurt, but it went in and the saline and urine came out. Then I took off the Urostomy dressing (wafer) and cleaned it all up with warm water and a little bit of soap) Then I threw on a square bandaid. Despite all of our efforts to keep my underware dry, it didn't happen so I had to change underware (luckily) I had a change of cloths with me. I changed my unders, then I got dressed. I also brought all of my own supplies just in case so I anchored down the capped off suprapubic with my own tape. After I got dressed, I asked my Surgeon to explain the surgery to me and use a diagram so I could see what he had done and understand the new "urinary tract" so to speak. He also gave me several of the easy catheters to take home and a script for more of them. He also put in a call to my Urologist at home to explain how the appointment went and what we did and what catheter we ended up going with and how the next 2 weeks would go. Supposedly over the next two weeks I am to self cath every 3-5 hours. I feel comfortable with 3-4. The suprapubic is to stay in place capped off and I am to pretend that it's not there and only use it as an emergency. When I am comfortable with self-cathing, the suprapubic will come out and eventually close up and then I am on my way well into recovery and learning my continent urinary diversion. Catheterizing after that point for the rest of the day was not easy and there was some pain involved. I ordered different types of catheters to arrive at my home before I left for NY but they had not yet shown up so I am stuck with the one that we used in the office that worked while sitting up. My Husband says the catheters have arrived and are waiting for me to come home and try them out to see if there is an even better fit. If not, the one I am using, I am sure I will get used to in time. It will be a bit easier once I am home and it my own environment. It will be more relaxing. Over the next several days I will learn how to navigate my urinary tract with the catheter and hopefully it will get easier. I am confident that with time, and the right catheter and position, that it will ease up. By bedtime I had had enough of catheteizing the stoma and tract, so I decided while the suprapubic is still in place, that I would use it to drain my urine for sleeping. I also took an Advil to reduce the inflamtion that the day had caused me. It worked out very nicely and as soon as I got up, I capped it off and catheterized the stoma to make sure it was still open. It was tight but open. I will self cath up until we leave for home and then I will use the bed bag for the car ride. At this time I don't want to have to deal with the dirty public restrooms. I'd like to avoid an infection. Depending on what time I get home and how the ride was, I will decide if I want to keep the night bag on or start cathing again. Hopefully over the next few days I will be able to cath all the way through the day and night without the aide of the suprapubic but at this time I am trying to make life as easy as possible for myself. It's hard enough dealing with all of this new stuff and the phantom pain and the car ride home. Let's not push the envelope here. I'm only on day 4 now of the Lyrica. I can't tell if it's working fully or not. It is working a bit but I am cautiously optimistic and will keep on going with it. Walking around the block seems to help the phantom urgency a bit. So I am going to start doing that at home.

Positives for the weekend: Urostomy tube is out, I am one tube free, leg bag won't have to be used with the suprapubic so I am lighter, got to see my surgeron have his full attention and help! The Lyrica is having no horrible side effects on me, its not making the urgency worse! I am sleeping without the aide of a sleeping pill. The Lyrica seems to help me sleep better. So I am sleeping pill free for the moment. One less pill to take. I'd like to diminish my pills down to just two medications a day. Stoma looks great! It's getting smaller and becoming more flush with my skin. There is no leakage as of yet (crossing fingers) so the band aids will do for now. I'm on the road to learning how to use my stoma and diversion.

Notes:
Need to order some lubrication (specifically traveling package sizes so I can just use and throw away)
Need to see if I can get a precrption of lidocane jelly to make cathing easier as I begin
Need to find a band aide that does not hurt my skin
Need to try out the new catheters and see if there is a better fit
Need to follow up with Local Urologist
Need to see if I can find an ET nurse in my area (no luck yet)
Need to call the Universtiy Hospital to see if My Insurance covers Biofeedback and Evaluation for Pain Management.

I guess I am leaving Thursday sometime instead of tonight.

2006-06-14T19:12:00.000-07:00

My parents were unable to come out as they wished tonight so we are going tomorrow. I just want to get this over with and be home and start my life. At least I have my kitties! They give me lots of love when life gives me lemons.

Kara

We are leaving for NYC tonight and driving half way.

2006-06-14T01:25:00.000-07:00

I have my pain management appointment today at 8:30 AM. Then I will come home and start packing for NYC. We are leaving late tonight, driving half way, and then stopping at a hotel in the middle and sleeping. Then we'll head out Thursday morning and finish the trip. I see my surgeon on Friday the 16TH to have the urostomy tube and temporary external pouch removed. Then I will learn how to catheterize myself. We will come home Saturday. I hope my trip is safe and quick. I want this over with NOW.

Kara

Why some of us still have pain after bladder removal?

2006-06-13T18:12:00.000-07:00

In my situation my first cystectomy went well but I still had my urethra. Over time my urethra became unusable and too painful so it had to be removed so I could get my urine out from somewhere. In my case, I had a continent urinary diversion. There were many dangers to this surgery, needless to say in this case I am lucky to be alive BUT, I was left with some horrible unexplained pain in the area where my urethra was removed. None of the doctors could really answer what was happening to me or when it would go away, so I went and did my own research. My primary care physician says that whenever I do this, it helps him tremendously on how to try and treat me when no other doctors will.

I gathered a bunch of information and put it into a paper form for those of us whom are interested in phantom pain and urgency that still may exist after our cystectomies and urethrectomies. It sheds some light on what exactly is happening to us and our brains and bodies and that it has the possibility to go away with time which gives a few of on here some hope. At the end I will list some of the medications that doctors are using to combat this phantom pain when it’s at it’s worst and most persistent like what I am going through and I know some others are too.

Here I go with my information collection:

We can suffer with severe pain, even when the painful part is no longer part of the body. Doctors and Researchers have learned that the central nervous system (the brain and the spinal cord) is capable of creating "memories" of pain that can cause the pain to persist. A patient may feel sensations in a limb which is no longer part of his/her body. This pain can affect mastectomy patients as well as patients with simple tooth extractions. And with time cystectomy and urethrectomy patients will be included in this list. In fact, these unusual phantom sensations occur in most people following amputation or in our case removal and reconstruction of our bladders. Sometimes this pain and discomfort may be similar to the pain that the patient had prior to the surgery itself or sometimes a patient may have the new pain. The sensations can be changes in size or position, or actual feelings of heat, cold, or touch. In some patients, these abnormal sensations include pain. Because the pain is experienced in a part of the body that is no longer present, it is called phantom pain. In other words, our brains are not oriented to fully believe and adjust to the removal of a vital body part. So even when a patient fully understands that an amputation or in our case bladder removal and or reconstruction has occurred, and it is in the best interest of their health, the patient’s brain may have difficulty adjusting and accepting this insult to the body. "For instance, in chronic pain there's often an emotional element. If a patient has post-traumatic stress syndrome, that could make the pain worse because there are overlapping disorders." Luckily, for most patients, both the phantom sensations and pain gradually resolve with time.
The actual cause of phantom pain is not known. Most authorities currently believe that both phantom pain and other phantom sensations are generated from the spinal cord and brain.
There are many treatments that can help with phantom pain, but no single approach is universally successful. In fact the best approach may be to mix multiple treatments.

Many of the treatments are associated with an amputation of a limb but these medications may be used for bladder removal and urethrectomy patients whom are suffering from phantom pain but it’s all based on what your doctor determines is right for you.

Medications”Doctors often try medications first. Although there are no medications specifically for phantom pain, several are used to help chronic pain of any origin. Keep in mind that no single drug works for everyone, and not everyone benefits from medications. You may need to try several different drugs to find one that works for you.

Medications to manage phantom pain
§ Antidepressants. Certain types of antidepressants may help relieve phantom pain, even if you don't have symptoms of depression. Doctors prescribe a lower dose for phantom pain than that for depression, so side effects may be less severe. You'll need to take this type of medication for at least one to two weeks before you notice an effect, and you may not receive the full benefit for four to six weeks. Some antidepressants may also help you sleep, which can make you feel better. Antidepressants that may provide pain relief include doxepin (Sinequan), desipramine (Norpramin), nortriptyline (Aventyl, Pamelor), imipramine (Tofranil), venlafaxine (Effexor) and bupropion (Wellbutrin).
§ Anticonvulsants. Doctors may prescribe an anticonvulsant drug such as carbamazepine (Carbatrol, Tegretol) even though you aren't having seizures. Carbamazepine is a drug used to control some types of seizures and for the facial pain of trigeminal neuralgia. Other anticonvulsants that may reduce phantom pain include gabapentin (Neurontin), pregabalin (Lyrica), lamotrigine (Lamictal), tiagabine (Gabitril), topiramate (Topamax), levetiracetam (Keppra), and zonisamide (Zonegran). As with other pain medications, they don't work for everyone.
§ Chlorpromazine. Doctors commonly use the drug chlorpromazine (Thorazine) to treat psychotic disorders such as schizophrenia. Sometimes it offers relief to people with phantom pain.
§ Central nervous system depressants. Clonazepam (Klonopin) is a benzodiazepine, a drug that slows down the central nervous system. It has many uses, including as a treatment to relax muscle spasms. Clonazepam may relieve phantom pain for some people.
§ Opioids or narcotics. Opioid medications, morphine and related painkillers, may be an option for some people. Taken in appropriate doses under your doctor's direction, they may help control phantom pain. However, you may not be able to take them if you have a history of substance abuse or lung disease. Even if you don't have a history of substance abuse, these drugs can be addicting.
§ Clonidine (Catapres). This drug is primarily used to treat high blood pressure. Because it affects pain pathways, it can also be very helpful in treating phantom pain.
§ Baclofen (Lioresal). This drug is a muscle relaxant and anti-spasticity drug. It can be used to treat nerve-related pain, muscle spasms and neuropathic pain syndromes — such as phantom pain.
§ Botulinum Toxin Type A (Botox). Botox may be helpful in relieving phantom limb pain and in reducing the number of attacks. Doctors will continue to study this drug for many possible uses, including pain control.
Nonsurgical approachesAs with medications, treating phantom pain with nonsurgical therapies is a matter of trial and observation. The following techniques may relieve phantom pain:
§ Transcutaneous electrical nerve stimulation (TENS). In TENS, doctors send a weak electrical current to specific points on the skin over a nerve pathway. This may interrupt pain signals, preventing them from reaching your brain. Although safe and painless, TENS doesn't work for everyone or for all types of pain. It's generally more effective for acute pain than for chronic pain and is often used with other treatments. TENS may be a good option to try for people who can't take or don't get relief from medications.
§ Electroconvulsive therapy (ECT). This treatment involves sending a brief electrical current to the head to stimulate the brain. Before the procedure, you receive a general anesthetic and strong muscle relaxants to control movement and pain. ECT is thought to alter brain chemicals related to pain sensation and mood. Doctors use ECT for depression and other mental disorders.
§ Acupuncture. The National Institutes of Health has found that acupuncture can be an effective treatment for some types of chronic pain. In acupuncture, the practitioner inserts sterilized stainless steel needles into the skin at specific points on the body. It is thought that acupuncture stimulates your central nervous system to release neurotransmitters, hormones or the body's natural pain-relieving endorphins. Acupuncture may also alter how your blood pressure, blood flow and body temperature are regulated and respond to pain.
Other experimental treatments include other nerve blocks and destruction of nerve tissue (nerve tissue ablation). No clear evidence has yet shown these treatments to be helpful.”

So, I am on my journey to try to help this phantom pain/urgency because in my case, I can’t just wait for it to go away on its own. My phantom urgency is too severe to sit and wait so I have to be proactive and find a way and a doctor to temporarily relieve it until it hopefully goes away forever.

Kara

I have gotten my pain management appointment moved up.

2006-06-12T09:22:00.000-07:00

One postive move that has happened is that I got my pain managment appointment moved up to this Wednesday at 8:30 AM. I hope she can help. I found out that she is a Podiatrist???????? I am so confused. I thought she was an anethesiologist. Well if a foot doctor can take away the pain in my urethral area than she deserves the doctor of the year award! Unfortunately, I have to suffer until I can see her. Each minute is torture. I just ordered several different catheter types from my supply company so they will be here before I leave for NYC on Thursday. I wanted to have catheters wtih me of all types in case my surgeon's office doesn't have what I need for what is comfortable to me. I also ordered stoma covers since my urostomy tube will be coming out Friday and it will need a cover. I had to do all of the research on my own as usual because I don't have an ET nurse and it will be too late by the time I have my appointment. In case I leak I don't want to leak all over the Ferry to Staten Island on the way home. I wanted to be prepared the best way I could and I did that. I am doing everything I can think of to help myself through this. It sure is a lonely place.Unfortunately, I have to suffer until I can see her.

This song sums it up the best:

"Is anybody out there
Does anybody see
That when the lights are off something's killing me
I know it seems like people care
Cause they're always around me
But when the day is done and everybody runs
Who will be the one to save me from myself
Who will be the one who's there
And not ashamed to see me crawl
Who's gonna catch me when I fall
When the show is over
And it's empty everywhere
It's hard to face going back alone
So I walk around the city
Anything, anything to clear my head
I've got nowhere to go nowhere but home
Who will be the one who's there
And not ashamed to see me crawl
Who's gonna catch me when I fall
It may seem I have everything
But everything means nothing
When the ride that you've been on
That you're coming off
Leaves you feeling lost
Is anybody out there
Does anybody see
That sometimes loneliness is just a part of me"
(CATCH ME WHEN I FALL) by ASHLEE SIMPSON

Kara

2006-06-11T14:28:00.000-07:00

Sorry about the other blog site.....maybe this one will work better. We'll see.

Kara

ICN and Ostomy Patients (Original Journal that goes back to the beginning)

2006-06-11T14:22:00.000-07:00

Sunday, June 11, 2006
I am 30! Current mood: blah Category: Life
My mom gave me a card that sums it all up as best as I feel at the moment! I feel the negative half and need to learn how to feel the positive half.
COUNT YOUR GARDEN BY THE FLOWERS, NEVER BY THE LEAVES THAT FALL.
COUNT YOUR DAYS BY THE GOLDEN HOURS. DON'T REMEMBER THE CLOUDS AT ALL.
COUNT THE NIGHTS BY THE STARS, NOT THE SHADOWS.
COUNT YOUR LIFE BY SMILES, NOT TEARS.
AND WTH THE JOY OF YOUR BIRTHDAY. COUNT YOUR AGE BY FRIENDS, NOT YEARS.
Thanks Mom,
Love,
Kara

Thursday, June 08, 2006
I turn 30 in 3 days. Current mood: disappointed Category: Life
My 30th birthday is tomorrow. I was born 30 years ago weighing only 1 pound and 10 oz. I was 12 inches long and could fit into my parents hands. I was born 3 months early and in 1976 they did not have a lot of experience with premies like they do today. They told my mom I was dead and did she want to see me. She said "NO!" Then an hour later another nurse came in and they asked her again is she wanted to see me and my mom said that she was too sad to go and see her dead daughter. The nurse said, "SHE'S NOT DEAD!????" WHO TOLD YOU THAT? There is a Rabbi and a Priest down there at the foot of her bead and she is breathing on her own with no ventilator. We've never seen anything like this before. They most always need a ventilator but your daughter has decided to breathe on her own and fight and you and your Husband need to go down there and touch her and help her fight to live. I stayed in that Hospital in Rochester NY for 3 months. I had no birth defects and no brain damage. My 3.9 average in college gives that away. After the day I was born, I have fought for everything in life that I have wanted and I mean everything!
I thought I would have so much by the time I turned 30. A career as a high school counselor, a house, two or more babies..........
Tomorrow is 30 and look where I am? Sometimes I think I did this to myself and that it's all my fault and that I deserve what I get out of it. I don't feel like fighting hard anymore. I am back at the beginning of this horrid journey.
We usually have a huge celebration every one of my birthdays but I did not want one this year so we are all just going out to dinner, my Parents, Grandmother, Husband, Sister and her Fiance and Me. We are going out for seafood and then coming back to my apartment to relax and talk.
I told my mom a few weeks ago that I did not think I would make it to age 30 and she said YES you WILL because even if you can't fight for you, Dad and Allen and Gram and I are and so are all of your friends. We will hold you up if you don't have the strength to do it yourself. You made it to 30 Kara and you will make it beyond.
I know most of this sounds trite and young but this is where I am.
Happy Birthday Kara. I hope your phantom urgency bites the dust on Sunday so you can enjoy your day!
I hope this was all worth it in the end........

Kara and Cali

Wednesday, June 07, 2006
The anticholinergic made it worse. Current mood: crappy
The anticholindergic made me feel worse so I won't be taking that again.
At the moment there are no answers.
I wish this was easier and I hope it's just a glitch in the recovery process.
4 weeks of a normal life except for tubes coming out of me but I was at least happy and pain free.
Kara

Here is what my surgeon said but he is at a loss as to what is happening. Current mood: crappy Category: Life
Here is what my surgeon said but he is at a loss.
My surgeon from NY just called me and says that there is no urethra there anymore so trying an antispasmotic or anticholineric (lke ditropran or detrol)won't really scientifically do anything becuase there is no bladder tissue for those meds to work on anyway. He said it could be phantom urgency but is not sure how to take care of it. He asked me where I felt the pain and I told him I felt it where the urethra used to be and he said that if the feeling was up more where my pouch was located one of the antispasmotics would actually help because the bowel that my pouch is made out of still has bowel function and can have peristalsis and spasm and cause some pain, but it's not there. He says that there are nerve endings where the urethra was taken out and they are probably very sensitive right now and they have sensory or memory tissue in them that remembers the pain from before. He says it's probably irritative there. The problem is that they can't remove the nerve supply to that area. So will it go away? We dont know the answer to that. Is it phantom? We don't know the answer to that? Is it sensory? Most Likely! How do we fix it? There is no answers right now. He is calling in some sort of anticholinergic but says he doesn't expect it to help but he's not afraid to try anything so I am going to pick it up. It's a med I have never tried before so maybe, just maybe there is a chance. He says he does not know why 4 weeks went by with no problem and then bang! He's young and learning too.At least he called back to explain what he could that was better than nothing at all. Kara

Tuesday, June 06, 2006
I am sooooooooo MAD!!!!!!!!!! I need HELP....... Category: Life
I am sooooooooo MAD!!!!!!!!!! I need HELP.......
I CAN'T FIND AN ET NURSE ANYWHERE TO HELP WITH MY NEEDS!I had my continent urinary diversion May 2nd and still don't have an ET Nurse. My surgery was done in NYC but I live in CNY. I've had to order all of my supplies by myself with no assistance from the medical field and have had to find answers to all of my questions online or through the phone. No one will take me on as a patient because my surgery was not done here. They also said they've never seen a continent urinary diversion before??? WHAT?????? WHAT ABOUT ALL THE CANCER PATIENTS OUT THERE? So what do I do? My doctor "local urologist" is not helping. He assured me several times that he would take care of me as soon as the surgery was over and then handed me the phone number of the Susan Stuart nurse She refuses to see me.I am having to make all of the phone calls. I've checked with all of the ET nurses in my area that I had phone numbers for and stll can't find one. I've had to do every thing on my own and I've never even had a stoma before. They keep telling me to go back to NYC with all of my questions and concerns, BUT I DON"T LIVE THERE???? 7-8 hours away if I need to see an ET Nurse? IS this normal? I even called the UOAA Syracsue chapter and they could not find anyone? I am so scared, I need help with supplies, and learning how to catheterize in 3 weeks. I've been on the phone all day making phone call after phone call after phone call, including one back to my Doctors Office here locally and asked why they had not called me back regarding why this ET nurse at his hospital would not see me. The secretary said it's not "thier" prooblem and to work with the ET nurse in NYC. The ET nurse in NYC said I could call her but she would not be able to technically help me from all the way down there if something happened. I've joined the conintent urinary diversion message board website but they can't get me a nurse.........I saw my primary care doctor yesterday to drop off a urine sample to check for a UTI because I am having urgency symptoms or "phantom urgency" and I wanted to make sure it was nothing serious. The doctor said, I thought since you had this sugery, that you would be taken care of and I wouldn't have to see you for this problem anymore.................UMMMMMMMMMM???????What happens if I have to go to the ER? Are they going to turn me away too? Or tell me to drive 8 hours to NYC? In the middle of an emegency?This is why I still post here, because I am having to learn how to do all of this on my own and I believe that it is unacceptable and disresptectful of this medical community. Some day I hope all of the information I have learned, will help others in my shoes or going to be in my shoes. I will learn and I will teach as much as I learn and research.I am OUTRAGED to say the least!!!!!!!!!!Please just listen to my frustration and hear my sadness. I needed to express my anger. I feel like a feak! Once again, as before, no one will touch me. Why am I here? WHY?Kara Lynn

Monday, June 05, 2006
Scared! Category: Life
I dropped off my urine sample and had my blood drawn today by my primary care doctor. I won't find out the results until Wednesday. I am freaked out that it's not an infection and that it's just phantom urgency. Recovery can be aweful. Now knowing what is wrong with you is the worst feeling ever. Feeling like I did this surgry for nothing is making me feel crazy. If there was a GOD then it would just be as simple as an infection. I remember going through this with my first cystectomy and being just as frightened. It all worked out in the end though. Praying for a miracle.
I am sad.........

Saturday, June 03, 2006
Still having Urgency and Scared to Death! Current mood: depressed
I could be all flowery and post all of the positives today, I'm just going to let that go for the moment and be real. It's important to me and any others who are going through this right now.
I am still having urgency and praying that it is an infection. I won't know until later next week. I have an appt. with my primary care doc Monday afternoon.
Sorry I have nothing good to report.
Just a bump in the recovery process it happens.
I would like to be on some sort of antibiotic even if it is not an infection. I have one of these catheters for 8 weeks total. That is too long with no chnage to a new one.
My last cystectomy I was on antibiotics for 3 months.....
I am so scared and in so much pain and if any of you know me, you know that I did this surgry because there was no other medical options for me including meedication.
The only think I can do it wait for next week but it is so painful where the urethra used to be. Burning Urge feeling.
Still praying for a mirace. The 5 weeks of no pain and urgency was so wonderful, I just want some more of it. I wanted to go on.
When I get past this the old Kara the one that is not so scared will come back and post all of the positives for the day.
Kara

Friday, June 02, 2006
Phantom Pain or Infection? No one knows the answers..... Current mood: disappointed Category: Life
Today continues just like last night. I am still having urgency. I've gone 5 weeks with a great life. It was good while it lasted. I can't figure out if this is phantom urgency or an raging infection. I've had my Urostomy tube and Suprapubic tube in for 5 weeks now with no antibiotics to take to ward off any sort of infection. Cathetrs normally stay in the body for about 3-4 weeks and then are changed (meaning regular foley catheters) in this case because of surgery these tubes are in for longer but I can't help but wonder why I am not on an antibiotic at least everyother day at a low dose? The urologists won't even do a urine sample so I am gong to my primary care doctor on Monday and I know he will definetely do a urine alyisis and then urine culture which takes 48 hours to get back to us. I just want to make sure it's not an infection because I don't want it to turn into a kidney infection. The urge feels like a burn. There is no other pain but the urge to pee and it does not go away. Monday, I will drop off my sample. If the culture comes back 100,000 or greater, they will put me on the correct antibiotic based on the culture and sensitivity. I don't like doctors to just give me a random antibiotic. I like to kill the infection with the appropriate weapon. So , I have to wait. I'd rather have an infection, then at least we know that the surgery did not fail. This is why I did the surgery, to get rid of this feeling. I am just voicing my fears. This could go away with time and it could be an infection. I just want an explanation and to go on with my life. I knew that there was a possibility that the surgery would not work and I would be in pan for the rest of my life. I was just hoping for a miracle and still am.
This post is here out of my fear and anxiety. I don't normally post so negative, but I am scared and want some answers and know that there are not many answers out there.
Sorry for the fear in my voice. I am human too.
Kara

Thursday, June 01, 2006
Having a Phamtom Day Current mood: depressed Category: Life
My day started out well and then some phantom urgency started to head my way. Don't know how to get out of it but wait. I hope it goes away soon or I hope there is an explanation for it.
The only day I have had like this in 5 weeks.........
Kara

Just waitiing Current mood: cheerful Category: Life
I have a little over two weeks until my urostomy catheter comes out and I learn hot to catheterize. I am getting anxious and ready. I want to get on with my life and move foward. We have gotten through the first month and a half remarkably well, knock on wood. I am tapering off of most of my medication. I am not taking any pain meds except for a Vicoden now and then for PRN pain. I think it's been one on average one pill every 2 weeks for random stuff like pulling stitches.
Positives for the day: Catheters running, urine nice and clear, drinking and eating a lot, gaining weight, started to read again, stitches are out of suprapubic, changing dressings is getting easeir with time. My stoma looks great! Not much longer until I start the cathetrization process.
Kara Lynn

Wednesday, May 31, 2006
You learn something new everyday. Current mood: complacent Category: Life
We changed my urostomy wafer and bag yesterday and the hole where the catheter was threaded through began to what looked like rapidly distintegrate and we had to come home and put a new one on. I asked my Urologist why that happend and he said he did not know. I asked the nurse and she said she did not know. I asked them both if it could be the cranberry capsules in my urine that could be disintegrating the wafer and they said they did not know. I called so many people today I can't count but I finally found the answer to my question. The same thing happened with the new one we put on yesturday. It looks like a white turtleneck around the stoma. This is how it was finally explained to me....
"Durahesive skin barrier/wafers are designed for people whose stoma output is mostly liquid. Unlike other skin barrier/wafers that can break down around liquid output, Durahesive skin barrier/wafers swell up to protect the stoma. This unique effect, called turtlenecking, creates a more secure seal without harming the skin.

Durahesive skin barrier/wafers are also easy to fit, apply, and remove. Best of all, theyre resilient enough to adhere to skin while showering, bathing, and swimming."
So in the end what I thought was something wrong with the wafer was what was actually what was supposed to happen and was a good thing.
I was so afraid I was going to have to change it every single day and my skin is way too sensitive for that!
Kara

Tuesday, May 30, 2006
Finally some RELIEF! Current mood: cheerful Category: Life
Hello!
I had a stitch that was pulling on my suprapubic catheter and it was causing a massive skin infection both in and outside of me. I went to my local urologist today and he took that last stitch out. AHHHHHHHHHHHHHHHHHH what a BIG RELIEF! It feels so much better. Maybe I can sleep tonight. I've wanted that stitch out for 3 weeks now. The catheter stays in via a 30cc balloon that is infllated with sterile saline. It's like a huge balloon that could not possiby come out unless I really injure myself. So there are no more darn stitches to hurt me and I can rest now.........:woohoo: :woohoo:
Sometimes it's just the little things in life that make me happy!
They are having me call the hospitals ET Nurse. I hope she helps me with some of my concerns.
Just wanted to give you all an update. Today was a good day to get rid of that pain. I was literally just hanging in there. All is well and safe at the moment.
I am praying for all of us for speedy recoveries and fixed infections and healing surgeries.
Kara Lynn:cat:

Monday, May 29, 2006
My Husband Current mood: loved Category: Life
My Husband has been so great to me! He does not care that we don't have sex and said he wouldn't care if we could never do it again. He just wants to be with me. He has been through one bladder removal with me and took care of me the whole time ,day and night and now he's going through the reconstuction with me. He's been through the hundreds of surgeries and infertility treatments with me. We are in this as a team he says! He helps change my dressings, irrigates my catheters, checks my catheters to see if they are running when I forget, makes my meals, gets drinks for me when I am running out, gives me kisses, nice long ones to tell me he's still there with me. When we are apart he calls me every few hours to see how I am doing even when he is at work. The other day our first day home together after my trip to NY. He helped me in the morning with our irrigation routine and changing and cleaning the sites. He was late to work and his friends asked him if he was ok and he says, "yeah I just found out I have a new routine for my morning so I will have to set my alarm clock earlier from now on." He never complains about what he has to do. He works full time and then comes home and takes care of me at night. He's the most wonderful man I know! He says he married me and this is what marriage is all about, LOVE! I am worried about my body image and he tells me that I am still 100 eautiful to him no matter what. I told him I feel gross and he says, "Don't say that about the woman I love, you are NOT gross you are my Honey!" He has more self confidence in me than I do in myself. I need to count my blessings and realize that I am lucky to have Allen and always will be. Tomorrow he's leavng work whenever needs to to take me to the hosipital to have this stitch removed that is infected. I'd do the same for him if it happened to him or anything else happened to him. It's been 14 years total together through mostly thick but we perservere anyway.
Thank You Honey!!!!!!!!
Kara

Sunday, May 28, 2006
Follow Up Care in Central NY. I am happy! Current mood: excited Category: Life
My local Urologist is going to take out the last stitch that is pulling on my Suprapubic tube on Tuesday. He said he's got my back and going to help me with whatever I need from now on, he just could not do the reconstructve surgery. He was going to have me do it myself but then he was afraid that the balloon inside of the catheter that keeps it it may not be inflated and fall out and that there would be no one to help me tonight. So he wants me to literally hang in there until Tuesday. My husband and I anchored it down the best we could for now but it still hurts like Hell. I refuse to take a Vicoden for a stitch that is killing me. After all I've gone through this whole surgery without any pain meds, why start now?
Kara

Saturday, May 27, 2006
First Period without my urethra..... Current mood: grateful Category: Life
I got my first period without having a urethra. Normally I would be in the hospital under an epidural for the pain by now. I am not there yet. I hope this works. I did have to take some motrin for some mild cramping. I also used a tampon so we will see how I feel througout the night. I had vaginal surgery but they did not tell me not to use tampons. My doctor is away so I can't call him. I am going to see how it goes and change it every 3-4 hours to keep it clean in there. I am also using the smallest sized ones. I am praying for this to be the miracle I so badly wanted out of life.
Positives for today so far: My Central Air is fixed for the HOT weekend and week ahead. No Pain today except for some cramping. Eating, Drinking, Catheters are running, suprapubic is not bothering me today.
Kara

Friday, May 26, 2006
Today is one day closer to getting my Urostomy tube Removed! Current mood: hopeful Category: Life
I am looking foward to my one urostomy tube coming out June 16th, which means the external pouch/bag comes off for good if all goes well. I will still have the Suprapubic tube until I learn how to catheterize my new stoma. We did have to irrigate in the middle of the night because my Suprapubic got kinked but after we irrigated and had both tubes running everything felt much better. I irrigate normally twice a day but if there is a problem like a mucous plug, we have to take care of it immediately so there is no distension of the new bladder. The whole point of having two tubes is so that no urine collects into the new bladder so it can heal. But we took care of it and it's something that I keep an eye on all day as well. My Suprapubic is driving me a little crazy because (just like in 2002) It's only hanging on my one stitch and it hurts. But all things considered mucous plugs and pulling stitches, it could be worse. Oh and my back hurts on and off for no reason. The doctor has no idea why. The only thing that helps it is Xanax, only when I absolutley need it. I would say the thing that bothers me the most is the back pain when it happens. There's no rhime or reason. I will ask him if they can do an IVP after I see him post-op to make sure it has nothing to do with my Kidneys. I do remember this happened with my last cystectomy and my Kidney's were fine but it was pretty painful.
Positives for Today: They are working on fixng my air conditioner. I've reached the time in the month, ovulation and past where I usually end up in the hospital for urethral pain and I am not feeling anything. In fact my period is due in a few days and my urethra is not going crazy like it normally does. Catheters are running, one off and then one on still but at least one is draining at a time. No Pain except for back on and off and the stitch. Eating well and drinking lots! I've gained 4 pounds!!! FOR ME THAT IS GOOD! I have started to read again! YAY! Let's hope the good trends continue!

Tuesday, May 23, 2006
I did it! Current mood: accomplished Category: Life
Today, I made all of my meals, took a shower, washed my hair, shaved (everything), changed my own dressings, including both catheters, irrigated them, and then changed my temporary urostomy dressing. I did this all by myself. My grandmother was going to come to do it for me but I was bound and determined to try it myself to see if I could do it. It worked. I am proud of myself for doing this on my own and not needing any help. It's not easy to do this with only two hands when you are fist learning how to do it. I am so happy. I am working with my recovery. Some days are great like today and some days I don't feel like moving. I just wanted to post my victory today!Here's to a good day! I am looking foward to watching American Idol!Have a good evening everyone!Kara Lynn

Monday, May 22, 2006
Teaching Husband How to help take care of me. Current mood: grateful Category: Life
As a Family, We all decided to do away with the visiting nurse service. I was teaching the nurse how to take care of me. It's not worth the money if they don't know what they are doing. Sometimes we know our bodies better than they do and can get the jobs done in a better fashion. I've taught my Husband how to help take care of the dressings, urostomy site, stoma, and irrigation of the catheter system that I was set up with. He does a great job as usual. He even wakes up in the middle of the night to help if I need something. It's great to be home with him.
Positives for the day: Eating, Driking a LOT, having normal BM's, Catheters are running, Stoma looks great, No pain meds, I STARTED READING AGAIN (I stopped doing my favorite activities when I my urethra got really sick in December). One of my Maine Coons is sitting on my legs, keeping me warm It's really cold here today.

Saturday, May 20, 2006
I AM HOME!!!!!!!!!! Current mood: cheerful Category: Life
I've been away from home for about 3 weeks now in a city I HATED!I'm back in Syracuse, my real HOME! It took us 4 and 1/2 hours because my Mom was driving. We had no problems. There was no urgency to pee the whole time and no bowel trouble. All went as smooth as it could. I hugged and got kisses from my Maine Coons and my Bunny and My Husband kissed me so many times I can't count. He is sitting next to me on the bed right now holding my arm. We are happy to be back together as a family. My Grandmother is unpacking all of my Paraphernalia from the Hospital. We go back on June 16th for my Urostomy Catheter to be removed. The I will learn how to self cath my stoma and when I am comfortable the suprapubic will be removed by my local urologist. Thanks for the love and support to those of you have given to me throughout the years. Sincerely,Kara Lynn

Friday, May 19, 2006
My Mom and Dad are here to take us home tomorrow. Current mood: cheerful Category: Life
My parents came to get my Grandmother and I and take us back to Central NY tomorrow. I hope I can make the trip back without too much trouble. It will be about a 6-7 hour car ride home. I was so glad to see my Mom and Dad and will be even more happy to see My Husband, Kitties, Buuny and House. I will enjoy the privacy of my own bathroom.
Postives for Today: Catheters are running after a few irrigations, my doctor left it up to me when I feel it is needed to irrigate. He knows that I know my body well enough at this point. I am eating and drinking normally. Going to try to make the long trip home tomorrow. I took a shower and changed my dressings with little help. I removed all of my steri strips, the incision looks great! Healing Nicely. No pain meds today but I may need them on the ride home! Still working on the diarhea and back pain. I think I need my own bed for one and my own food that I normally would eat at home but all said and done today was a good day.
Kara

Thursday, May 18, 2006
Changing Dressings Current mood: cheerful Category: Life
Above all, else take what your medical team tells you to do, I am just posting my own experience. How I am caring for my dressings and catheters after having bladder removal/diversion or reconstuction. This is just Karas methodthere are many other ways to do this. Ayone else who has gone through this feel free to add your own experiences if you wish. The more information we have the better we can help each other.This is ONLY ONE example of how to take care of a Urinary Diversion. Its just my experience and I may tweak it as I go. I just wanted to send this out there so people can get an idea of what it is like for me and maybe some of the information will be helpful to someone else too who may be about to go through it and or didnt get any written instructions. I wrote all of this down while my ET Nurse was teaching me in the hospital. I like to write things down because I get so overwhelmed when it is only shown to me one time. I thought it could help someone else someday too. Everything will also vary depending on what type of Urinary Diversion you have had or about to have done, what your surgeon wants you to do and what your ET nurse has taught you. I had a Continent Urinary Diversion much like the Indiana Pouch.On the Right Hand Side of Me. (This is where the SupraPubic Catheter is located)After removing the dressing and cleaning the suprapubic catheter with warm soap and water, a shower or whatever your doctor or ET nurse wants you to use (make sure skin is dry):1.Put on the Skin Prep for sensitive skin to tape the tape to instead of your skin. 2.Put on the Duoderm if needed. It comes in different thinknesses. (Its wound care for people who bleed when they use tape) cut a slit in it and a circle to fit around the suprapubic or you can use drainage sponges that have holes already cut into them to fit around the suprapubic catheter if your skin does not require anything special. (After a few days I just laid some drainage gauze around the suprapubic and did away with the Duoderm. It was less abrasive in the end.3.Take off sticky backing and stick to skin ( make sure you leave enough room to clean around and let the suprapubic catheter breathe 4.Put a bit of gauze around the suprapubic catheter in order to allow for any leakage that may occur. 5.Anchor the suprapubic to the skin and allow some slack so it does not pull every time you moveON THE LFET SIDE WHERE THE STOMA, CATHETER AND EXTERNAL BAG ARE, OF WHICH ARE ONLY TEMPORARY FOR MYSELF: The ET nurse will have measured you to see what size wafer you will be using, which means what size wafer will fit the size of your stoma. The wafer is what sticks to the skin around the stoma and then the pouch (bag) fits over that after it has been secured to the skin, the pouch will seal onto the wafer like Tupperware. If the wafer does not fit your stoma you can custom cut it to do so. I was given a measuring guide to help do this. My stoma has been getting smaller and smaller each day so when I change my wafer, which for my skin sensitivity will be once a week, I will have to customize the size to fit accordingly.1.Take the bag you are using and break open the reflux seal with your fingers if you are using a catheter so that the catheter can fit into it.2.Take off old wafer, after emptying urine first (This can be done by wetting the outside of the wafer with warm water, soap if desired) If you have sensitive skin you can go as slowly as you need to while doing this) Some people can take their wafers off in the shower depending on what your surgeon wants you to do.3.While I change my wafer I have chosen to cork off my catheters so I can clean up an prep it without urine leaking all over the place4.If your catheter requires irrigating this would be a good time to do it so you dont have to keep opening and closing the bag around a new surgery site.5.Clean off the catheter too at this time with whatever your ET Nurse tells you to use. (Some people like to clean theirs off in the shower too. I am just using a warm water and soap solution at the moment as this is so new.6.Make sure there is no smell around the stoma and that it is a healthy pink color like the color of the inside of your cheek. Make sure all of the mucous has been cleaned off. 7.Open up your wafer package and measure it to your stoma size with the measurement guide or by eye if you dont have one. If its not big enough you can make it bigger with special scissors that are curved. Mine came in stoma care kit. It makes cutting the hole much easier8.After cutting out the hole, smooth out the rough edges with your fingers.9.Put on skin prep if you need it like me for sensitive skin. Wait for it to dry. You can fan it dry with a piece of paper.10.Dry off skin around stoma so that the wafer will stick 11.You can put the wafer on now so you can see what you are doing or you can attach the bag to the wafer and thread the catheter through it all at once. (I am comfortable with attaching the wafer first and then sealing the external urostomy bag on after.12.Remove the backing from the wafer, center the wafer over the stoma, press in place, then remove the backing around the seal around the wafer and press in place13.If you have a catheter in your stoma, take out the plug if you use one, and thread the catheter through the urostomy pouch and attach it to the wafer. It should snap like Tupperware. Run your fingers around the circle a few times to make sure it is sealed shut. If you cant see all the way around it to see if it is snapped shut, you can use a hand mirror to look. It helps a bit to push your abdomen out while snapping on the pouch. 14.Make sure the urostomy pouch is capped off so urine does not leak everywhere.15.If you want to get a good seal after everything is attached you can place your hand over the external pouch just over the wafer and gently hold it over the appliance for a few minutes. This molds the wafer to your skin by the warmth of your hand.16.How you position your pouch will depend on what you are doing. If you are sleeping you may want to position it to the side so it can drain better while attached to your night time drainage or bed bag as I call it. If you are going out and wearing pants or a skirt you can position the bag along your leg straight down. My hope was to reach out to others who are having this done or have had it done and have questions. I know I did. Feel free to add your own experiences to this as this is only one method.

Wednesday, May 17, 2006
2 days left until my parents come to get me. Current mood: determined Category: Life
Today was a good day physically. My catheters were both running nicely. I ate a bit of lunch and a HUGE dinner. I have been keeping up on the drinking of fluids all day. I took a nice nap for 2 hours. I watched all of my favorite shows. There is some gas that is a bit annoying but I remember it happened the first cystectomy but it was much worse than this. The recovery goes on......
Kara

Tuesday, May 16, 2006
Irrigating and Running Catheters Current mood: hopeful
The back pain has subsided for the day. I've been working on keeping my catheters running and clean. One side will run and the other will stop. My doctor says that as long as one is running then it is ok. Today neither one was running so I was a little frantic. We irrigated both of them numerous times but still nothing. Finally I started to drink more fluids and one of them began to run. This will be a running fear of mine throughout the next several weeks because If they don't run what do you do go back in for surgery? They are not like foley catheters that you can add and remove when needed. They wanted me to take a shower in the hospital but I was too afraid to. I've taken one already and will take one on Friday. I take one on the days that I have to change the Urostomy dressings. I change those twice a week so 2 showers a week. I guess it goes to show you how different each doctor's protocol is.
Postives for the day: No Pain. No Pain meds taken. No Xanax for the back needed. The stitch that was bothering me last night has calmed down with some Bacetracin advised to put on by my Doctor. Looking forward to going home. We changed the Urostomy dressing tonight because the last one was falling off. I am all set for a few days. Eating and drinking normally still. Diarhea under control with Lomotil from the GI team that was part of my surgery.

Monday, May 15, 2006
Yesterday..... Current mood: determined Category: Life
I remember after I had my first cystectomy, I had some back pain. We thought it had something to do with my Kidneys but after being checked out it turned out to be some sort of back spasm problem due to being on the operating table for 11 hours. It's happening again this time and I can't figure it out. They gave me Valium 4 years ago and it took care of it. This time around I have Xanax and it seems to help which means it could be the same thing that happened last time. I don't like to take Xanax all day long but if it keeps the back pain away I may have no choice for a few weeks. I remember it being really frustrating back then and it is now. I am not running a fever. My BM's are loose and need to be contolled by Immodium twice a day. That also happend the first time around. I guess it's all a part of the healing process.
Positives for Today and Yesterday: No Pain except for in my back. Eating, Drinking better than before the surgery. Gaining some much needed weight. Catheters are irrigated and draining well. Stoma looks great! Learning how to use my urostomy and getting used to the different odor by spaying some body spray near my nose while I clean it up. Still limitig my Vicoden to only as needed which has not been often. Sleeping well. Thinking about starting to read again before bedtime which used to be one of my most favorite things. I'd love to find a good book that takes place by the ocean. Looking forward to going home on Saturday.

Saturday, May 13, 2006
Positives for the day. Current mood: content Category: Life
Positives for Today: Catheters are running well, no pain except for in the back. We are watching it carefully, eating and drinking a lot, took a nap around 2pm. BM's coming regularly but runny (normal at this stage). Watched Sisterhood of the Traveling Pants, talked to my sister, talked to Amy, Wendy is hopefully coming out tomorrow if she can make it.
Taking it easy. Looking for something good to watch tonight. Thinking about starting to read again. I have not read since December because the urethra was so upset.
Kara

Friday, May 12, 2006
Today. The Shower is Over. Current mood: accomplished Category: Life
We got through the shower and the changing of the dressings. I am so happy that is over. We are trying to get around the tape thing by not using much tape. The suprapubic catheter just has some gauze around it with a tiny piece of tape that anchors the gauze (in case of leakage but there has not been much yet) The suprapubic is anchored to my hip so as to not pull on it's stiches. The temporary urostomy pouch is anchored down by the wafer and does not come off for a week. My catheters are funny. They are both irrigated nicely as needed and running nice and clear. I am drinking a lot to keep them hydrated. The funny thing is one will drain and then stop for no reason and the other one will take over on the other side of me. They switch on and off throughout the day. There are no mucous plugs so there is no apparent reason for why they switch sides. As long as they keep running and are irrigated nicely then it's ok. Just strange. Must have something to do with physics which I know nothing about.
Positives for today: My shower is over and I am clean. My dressings have been changed, my catheters are running nicely, I am eating and drinking better than I did before the surgery, some supplies came, I talked to my parents today, we all miss eachother.

Tackling the shower today. Category: Life
I am getting used to the odor of the Urostomy. Judith gave me some WONDERFUL TIPS on how to take care of that.
Judith also gave me a hand with dealing with the sensitve skin issue which I am going to try today.
My skin is very sensitive to the tape on the dressings. In fact that hurts more than the whole bladder reconstruction and urethral removal. I am going to try to tackle the shower today with my Grandmother. After it is done I will be so glad it's over. I wish I had a home health aide to help but they don't exist anymore for this sort of surgery. I have to do it myself. My gram will stand in the shower with me. The healthcare system is so sad these days. I am not happy with my insurance company at the moment. I don't even know if they covered the surgery. Once I get throught this day. I will report how it went. I wish my skin was not so sensitive to the tape. I have to take a Vicoden just for that. When I was in the hospital I did not use any pain medication either except when they came in to change the dressings, other than that nothing, even when I was in the ICU, I had the means to a Patient Controlled Pain Pump and I could use as much as I needed but I did not push the button. Even when I was in the recovery room, I still did not push my pain button. I have my reasons for this but wish not to discuss them here.
Pluses for this morning: I have my Gram! No Pain except for the tape burning, eating and drinking normally, diarhea under control with Immodium twice a day.
OH AND.....I will have my external pouch and catheter removed June 14th at 1:45pm back here.

Thursday, May 11, 2006
Day 9 Post-Op Current mood: grateful
I am still eating and drinking althouh I have slowed down a bit due to some diarhea which I seem to remember happening after my cystectomy. I am taking Immodium for it at the moment and it has calmed down. This visiting nurse came but she is not worth it. I taught her how to change my dressings so I am having them send the service back. I will have to learn the rest on my own. She takes care of ostomies but not to my extent. She seemed quite puzzled and so I won't need the service after all. All she came for was to change the dressings and she is set up to come once more while I am here. My Insurance Co. only approved 2 visits from a nurse from now until June so there is no point. I think they made a mistake. After my cystectomy I had a nuse come every day for a month. She was awesome and taught me a lot. I will have to go on what I was taught in the hospital by the ostomy nurse. She was great! I am not in any pain and still not taking any pain meds. It does hurt to get up and down from a laying and sitting position but then I am ok once I am settled to where I am going. I've been watching TV most of today, slept a bit at 1pm and now I am here. I started a draft of how to change my dressings but I only got one page typed. The rest I will do when I am more "up" to it. I am missing Syracuse and Allen and my kitties and bunny. I want to be there but it's too still soon to travel that far. I will know when I am ready and then we still my have to stop half way so I can rest without the bumps in the road. I don't want to come back here for the post-op but I want to learn how to self cath and that is the only way I can do it, is to come back here. I am just tired about thinking about driving. But I don't have to do it now so I guess I don't need to worry about it.
So pluses for Today: No Pain, Eating, Drinking, Resting, Typed up one page of documentation for use in the future.
Kara

Tuesday, May 09, 2006
Day Number 7 Category: Life
Day 7 After Urethrectomy and Reconstruction of a Continent Urinary Diversion.
I am back from the hospital. I am living in Staten Island for now. I am healing well. I am eating full meals. The surgery went well as far as Plan A went. My Neobladder was turned into a Continent Urinary Diversion. I pray that it works out for me. I have a page full of notes that I will type up later on how to take care of my stoma and the external pouch. My visiting nurse will come sometime this week to see me. This surgery was a bit easier on me than the Cystectomy. I am happy so far but guarded as I go through the recovery and healing process. Anything can happen along the way and I need to be ready for anything to come in my future. I am in love with my doctor. He is one of a Kind for sure. I've never met anyone quite like him before. He reminds me of my Grandfather.
I will continue my recovery after I get some rest.
Welcome Home Kara (You Did It) I am Proud of YOU!!!!!
Kara

Thursday, April 27, 2006
The reason why my surgery was almost cancelled yesterday!!!
I just got back from my pre-op. All of my tests came back perfect, bloodwork and EKG and everything else. I am all set for the surgery and have been Medically Cleared to go forward by my Primary Care Doctor and by my Surgeon!
The reason I mention that I was cleared is because as of Yesterday there was a possibility it was going to be cancelled. I've only turned my whole life upside down to have this done and my family has too and so has the family in Staten Island. So many lives would have been affected here. There was a minor miscommunication between a nurse and a secretary yesterday and they (not the Doctor) were threatening to cancel my surgery. It was a big mess I wish not to discuss it all here but it was VERY upsetting to say the least. I have waited for 4 years to get someone to help me and then they tell me that they are cancelling my surgery because they are missing some paperwork! This had nothing to do with me. The nurse was saying bad things about this secretary and this secretary was saying bad things about this nurse and I was stuck in the middle asking what the heck I was supposed to do? This Surgeon needs a staff just like Dr. R has. They are so sweet and nice there. In all of my years of being sick I have NEVER encountered such rudeness and such trouble getting in for a surgery due to stupid petty little things. I will have to put thier mess behind me now and move on.
Kara

Thursday, April 27, 2006
Worries about plan C Current mood: contemplative Category: Life
I am not worried about the continent urinary stoma I was referring to plan C if it by some chance that could happen. I was referring to the stoma of an Ileal Conduit and the external pouches that are used for normal sized women and I am not. I just did not want a stoma that takes over my whole abdomen and an external pouch that is bigger than my abdomen. I've done the research most average external pouches are bigger than my whole abdomen. I would have to use a pediatric pouch for my size. I was just thinking ahead a few days ago before I even talked to the doc that says he's going to try his hardest to do plan A first then plan B. He said he does not want to do plan C at all if he can avoid it. So I hope I come out with my continent urinary diversion and have a tiny stoma. He mentioned that after time and healing that they eventually become flush with the skin and you can't even tell they are there unless you tell someone. I want to be able to throw a bathing suit on in a few months and go up to my pool. I have a tankini which is a two piece but looks like a one piece. I am hoping that I can do this around August/September. That would be 4 months after the surgery. I am trying to think about something positive with this. LET'S DO THIS THING! Kara

Surgery Preparation
All surgeons have a different way about doing things and how they like things best. So this may very as to what others may go through. It's just another example of how things can be done. This varies so wideley from what I had to do during my first cystectomy which goes to show me that different surgeons have different techniques. Sunday- Clear Liquids OnlyMonday- NO whole gallon of GOLYTELY, YAAAAAAAAAAAH Just one glass of Magnesium CitrateMonday-no meds except Neomyacin at 1pm 2pm and 11pm. (of and I can take the Xanax I usually take to sleep at night)Although I do have one question to ask the nurse as we get closer. I don't want to stop taking my Neurontin on the drop of a dime b/c it is dangerous and I use it as an antidepressant. So I will have to call on this one.nothing to eat or drink after midnight(not so bad as what I thought it would be like my first surgery)I asked him if he had to do plan C could they fit me for a pediatric external pouch because I am so tiny and he said he is not planning on doing plan C. He's hoping to do plan A or B but in the event that plan C happens they will fit me appropriately. I am a bit relieved......Kara

Wednesday, April 26, 2006
Today it was a BAD DAY!
My surgery almost got cancelled by two people today due to something I had no control over. If anyone wants to know what happned I will tell them privately.
Kara

Tuesday, April 25, 2006
One more day down, One more day scared! Current mood: angry Category: Life
At this time next week, my surgery will be over with. I am getting scared. I just really don't want the external pouch. I am so tiny that a normal pouch for a normal adult will not work with my body. They would need to do a pediatric type for me. I wish there was someone I could talk to now about this so my fears could be eased. I am the size of a 12 year old but I still have the figure of a woman. My Urologist who was supposed to take care of me over hear after NYC has not returned my calls and I need to know what will happen to me post-op. I need supplies and and ET nurse. I am frustrated tonight and feel like I am not getting my needs met.
Kara

Monday, April 24, 2006
One more day down. Current mood: anxious
I stayed low and around the house today. Everyone around me has caught this nasty cold that I can not afford to catch or they could cancel the surgery. I feel like I have come so far to have it cancelled. I need all of the prayers I can get. One more day down. Tomorrow a nurse should be calling me regarding my bowel prep and everything else I need to know before the surgery. We leave on Saturday afternoon. We stay in Staten Island for one night and then take the ferry over to NYC and a cab to our apartment/hotel and wait for our family to show up the next day. Monday I do my bowel prep and Tuesday is the surgery starting at 7:30 AM.
Kara

Two doctors appointments cancelled today. Current mood: indescribable
My primary care doc had to cancel my pre-op today because his Granmother passed away last night. I was just talking about how much my Granmohter means to me. She is 80 years old and still takes care of me when I need her. I feel so bad for him because they said he was REALLY close to her and is very sad. They rescheduled my pre-op for Thursday at 1:45. That will be 6 days before the surgery which is fine but I was hoping that we'd have the results before we left and I don't know if they get the results by Friday or they have to wait until Monday......in that case I will already be in NYC and it will be too late. I have this dumb fear that my pre-op will somehow show something wrong and they won't go through with the surgery. Is that stupid?Oh and the local Urologist can't take care of me post-op so I have to definetely stay in NYC for 4 weeks or more depending on when he wants to remove the tubes. I was hoping to come home for a bit and then go back but we have it set up to stay there for the 4 weeks or longer in Staten Island with family friends. I just like to be sick at home, especially with all of the tubes, I will have 3 of them when I leave the Hospital. The Suprapubic, The Stoma or where the external pouch would go.. (don't understand this one) and a drainage tube. Hard to navigate NYC with all of those tubes and to stay at a place that is not home to you. My Granmother is staying with me for the recovery and taking full care of me. I am so lucky to have her in my life. Its about an 8 hour car ride from here to NYC. My primary care doc also told me to stay in NYC that if something happened and I needed help, no one here in CNY would be able to help me. My heart goes out to my Primary Care Doctor and his family at this difficult time. Kara

Sunday, April 23, 2006
One more day down 6 days to go before we arrive in NYC. Current mood: tired
I am tired right now. One more day down, 6 days to go before we leave for NYC. It will be a busy week to say the least. Today was an Ok day. We slept a lot. I watched TV and talked on the phone. My friends are great supporters.
Night Everyone!
Kara

Saturday, April 22, 2006
One more day down. Current mood: irritated Category: Life
One more day down. My Keppra was increased to get me through this ovulation time. Today was a good day. I am getting tired of the foley though. I need a new bed bag. There are no supply places to get them here. I used to get them in MA down at a family run pharmacy that sold ostomy supplies. I wish I had a place here like that. I will have to find one soon. I am going to call my primary care doctor on Monday and find out where I get that stuff here and who precribes it to me.......I hate that the Urologists just turn their backs on you when you have IC.
Kara

Friday, April 21, 2006
8 days until we leave for NYC. Current mood: complacent Category: Life
Today. I stayed low. 8 days left before we leave for NYC. I am getting scared as I am human. I am scared of the NG Tube becuase I had a bad experience with it twice and really don't want to do it again. I hope it's not as bad this time. I am also worried aout how I will come out of surgery in the end with an Indiana Pouch or an Ileal Couduit. I wish I could go through surgery thinking I am on an ocean instead. I am tired and want the days to go by faster.
Kara

Thursday, April 20, 2006
One more day down. Current mood: distressed
Thank God one more day is almost over. 9 days left until the BIG day! I hope it goes fast. I am not looking forward to drinking the bowel prep but I do what I have to do to get through it as usual. My best friend "adopted sister" had her baby girl on Tuesday. I was happy for her and so glad her labor went well and really fast too! When I get better I will go and hold her baby in my arms and pray that someday, it happens to me and that I will be as great as a mom as she is! I am so proud of her! My Husband is still sick, this is his third day home. He won't go to the doctor but I wish he would. I can't get sick now. I am laying low. I did nothing today. Just rested. My pre-op is on the 25th here in Central NY. My Husband's best friend and his girlfriend are coming to be with us for the surgery since my best friend could not be there because she just had her baby. They have already made their plane flights to JFK. It will be my Mom. Dad, Grandmother, Husband, His best Friend and his Girlfriend and me the night before surgery. We will have a full apartment that night! I am really tired just thinking about it.
Kara

Wednesday, April 19, 2006
One more day down. Current mood: anxious Category: Life
I got through all of the stuff today I mentioned I was going to do but it was not easy. I have my clothing for the surgery. I bought 4 long flowing skirts that go down to my feet and 5 empire waisted shirts to go with them. I am going to wear flip flops since that is what I am most comfortable with. I got my hair cut and highlighted. I had 5 inches cut off and it still goes down the middle of my back. Next week I will get a pedicure and my nails done. One day at a time, I am slowly getting ready for this surgery. I am just so scared at how it will turn out. I see how angry some people seem to be from what happend to them and I don't want to be bitter and angry when it's over. I hope I can still help others.
Kara

Tuesday, April 18, 2006
I should be asleep but I cought my Husband's Cold. Current mood: blah Category: Life
I am supposed to get up at 6:30AM but I can't sleep becuase I caught my Husband's cold. Decongestants irritate my urethra so I guess I will be up all night with my runny nose. Ewwww. I am supposed to get up at the crack of dawn, take a shower, go to my pain managmenet appointment, then go to the mall get some long summer skirts and empire wasted shirts for my surgery, and then I have a hair appointment at 1:30 that is 2 and 1/2 to 3 hours long (highlight and cut) and then do some light grocery shopping and pick up some prescrptions. I don't know if I will be able to do it all.........I wish I was normal and did not have IC to get in my way.
I hope you all have a pain free sleepful night!
Love,
Kara

Pain Management Tomorrow Category: Life
I had a pain management appointment with a new clinic tomorrow. Most of them are a waste of time because theu don't give out meds when you need them. They just do nerve blocks now. They call it interventional pain management but I call it a JOKE!!!
I have to go anyway because I may need some pain management when I leave the hospital after surgery for general surgical pain. I pray that they are nice to me. When I was in the hospital with the Epidural for a week, they were NOT Nice at all.
I am crossing my fingers.
2 weeks to go!
I have not reached my ovulation. I am scared for the pain after it happens. I hope I don't end up in the hospital like the last several months.
Kara

Monday, April 17, 2006
One day down and one day more to go! Current mood: sympathetic
One day down more to go. At least one day went by. I tried to spend my day helping others in my situation. I hope all of the digging I did for information helps some one someday so they don't go into cystectomy and or reconstruction blind. I am planning on writing my own manual when this is all over and maybe someday it will help others who are or were in my shoes.
I miss getting messages from you all!
I hope you are well and having low pain free days!
Love,
Kara

Waking up in a PANIC every morning now. Current mood: anxious Category: Life
Every single morning I have been waking up panicking about my surgery. I wake up with my heart racing and it sucks. I've never been this scared in my whole life. I never get scared of surgery. I usually just go in and say see you when I am done but this time it's totally different. I just wish we knew how I was going to wake up after surgery with the Indiana Pouch or the Ileal Conduit (external pouch). I want the Indiana Pouch more than anything in this world. I've always wanted it. It just took me 4 years to find a doc that was not scared of my "case". I've been turned away so many times I was not used to someone saying that they wanted to help us. And the day I got the call saying my surgery was May 2nd, I almost fainted. I could not believe that someone was actually going to operate on me. It blew me away. I just want to get it over with at this point and move on to the recovery. I originally wanted to wake up wth an epidural but I am having some pain where the last one was. My back hurts pretty bad. So I may ask them just to give me a PCA Fentanyl Pump and if the pain is that bad then do an epdural later on. It's up to the anesthsiologist and I have not met him yet. I will meet him the morning of the surgery. I am so scared!
Kara

Sunday, April 16, 2006
Graditute to all of my IC Family Members and where to message me. Current mood: grateful Category: Friends
To my IC Family and Friends. To Message me feel free to just send it via private message or email on the ICN. Don't bother trying to message me here it is way to hard to sign up for it and I do apologize for that. klkreese@twcny.rr.com
Thank You All for your continued love and support.
Love,
Kara

The worst Easter, Christmas and Thanksgiving we've ever had. Current mood: frustrated Category: Friends
This has been by far the worst Holiday Season for us. This Easter and for the past 4 Easters we have been stuck at home because I have been to sick to go out. My Husband has a Fever and I am in too much pain to try and find a place that has food. I am just laying here hoping Easter passes as quick as it came. I'm sorry this is so depressing but it is the truth of what IC can diminish some families down to. We've spent the past Christmas and Thanksgiving in the same condition. My Husband deserves so much better than I can give him. Instead all we are thinkig about today is getting his fever down and keeping me sane until surgery comes along. I've never been so depressed in my life and not for lack of trying. I can't take antidepressants of any kind because they all bother my urethra, so I have to work with what I have of myself and it is not much.
(This is not directed at my IC Family.) In my personal life.....There are some friends that I thought were my friends that are not. Because of some things that have happened in my personal life there are some people that have hurt me very deeply. They know who they are. Some people walk in and some walk out just when you need them. Too much has gone on in my life to have trust. I don't know where to go for help for what I am going through. I have searched the ends of the earth for someone who has gone through this and I only know 2 people. And my sitution is a bit different because we don't know the outcome of my surgery so I can't searh for pals until I wake up from surgery and know what I am dealing with. An Indiana type contienent pouch or a ileal conduit. I wish I was with my family now but I could not make the 3 hour drive to my Grandmothers house. We are all alone and sick. My Husband does not deserve a fever or me. I have 2 weeks to go but it's long and hard. I wanted to get my hair done but my urethral pain level is way too high to drive. I've never been so ashamed at what I've become. I wanted kids by now, a house, and a life. I have NONE of that..........I am sad that my old doc can't and won't help me anymore and I've had to put my body in the hands of someone I don't know. My surgeon and I went back 7 years. I thought I trusted him with my life but was naive in that fact that I didn't realize he didn't care all along he was just doing his job. I was the one who put him on a pedestal and gave him that title. When in reality I meant nothing to him. It also hurts to have so many doctors turn you away because they say your case is too complicated. If it was complicated then, then what will happen after reconstruction surgery? It's only going to get worse. I've been walked all over and laughed at and it hurts more than any of these words can say. I just don't know where to fit in anymore. I wish there were others out there like me that could reach out and explain this whole thing from beginning to end but there isnt. I've tried to help people so many times so that they get the knowledge they need to make the best choices for their own situations. I didn't want anyone to make the same mistakes I did with this bladder removal. I wanted an Indiana Pouch to begin with, I just didn't know what it was all about when I had my first cystectomy. I've tried to do it his way for 4 years and now I need to make a change in a city that I don't like and am 7 hours away from that has to be navigated by ferries, taxies, subways, trains, and walking and I am in no condition to do any of those things especially after surgery. I've tried to pass the time by doing things that are taking my mind off of this but all I can think about his how I will come out in the end. Will people point their fingers and laugh at me for the choices I made? Will they walk away and pretend they don't know me? You really find out who your real friends are when you need them the most. Some walk out and some walk in and embrace you. I've always tried to be considerate of others and how they are feeling but not everyone is like that. I want to know when I wake up from surgery someone is going to walk me through this step by step from waking up to the day I say, "I am having a good day today." with confidence. I don't know who those people are going to be in this city that is NOT my comfort zone. Just voicing my feelings. Some day I will help someone by writing all of this down step by step. That is all I ever cared about was helping others in their time of need. I just wish someone would help me in my time of need. I need someone to be going through this or have just gone through it. I just don't know where to find them. I've been searching and searching and they don't exist. I am taking the step to make sure someone who goes through a reconstuction has me to walk them through it.
Please don't ever forget I wanted the best for all of you. I am still thankful for my IC Friends and Family and all they have done for me now and in the past. I will still be there for all of you when I get out of surgery and heal. I want to help.
I am just having a really bad day today.
Kara

Saturday, April 15, 2006
I wish I wasn't alone here.
I am feeling quite alone here. I wish I knew others who are going through this surgery.
Kara

Friday, April 14, 2006
Hotel Reservations Have Been Made. Counting Down Now!
The Hotel Reservations have been confirmed. The Countdown to Urethrectomy (Bladder Reconstruction) starts now.......Here We Go!!!!!
Kara

Countdown To Urethrectomy Starts Now!
Hi everyone! Just wanted to let you know the coping strategies that I have been doing to get me through to my uretherctomy. The countdown is starting as soon as I get my hotel confirmation. I have been doing the best I can to distract myself while I wait. I've been talking on the phone with friends and family, picked up an old soap opera General Hosptial that I used to watch as a teenager, watch one of my favorite TV shows in the morning called Starting Over, spend time with my Maine Coons and Husband when he gets home at 5:30. Then we talk until prime time TV where I watch all of the prime time stuff. Next week I am going to attempt to get my hair cut and highlighted and buy some long skirts and emprie waisted shirts to hide all of my tubes and some flip flops. I've been talking with some people that are having the same surgery that I am having soon and they have been VERY helpful in getting through the day. I am calling the UOAA to get the closest chapter near me tomorrow so I can line myself up with a doctor that can take care of me post-op and call my uro here to see if he can get me an ET nurse if needed on this side of surgery. I may stay in NY for 4 weeks after the surgery so I don't have to go back to have all of my tubes removed. We have family friends that my Grandmother and I will stay with while I recover that live in Staten Island. I've also talked to some people that live in NY that have IC that are gracious enough to take time out of their hectic lives to come and visiti me in the hospital while I am there for a week or more. Oh and I read before bedtime. The talking on the phone and the TV have been my favorite outlets to the pain. It diverts me away from it for just a bit. I've looked around for other ostomy associations but have not found any that move fast enough for me. I am hoping the the UOAA can help me find a local chapter where I can meet someone who has a continent urinary diversion or an ileal conduit. I am ironing out all of the details and also take out some time to listen to music that makes me feel good. If I am really up for it I will go and drive but that is so hard to do in my position. I am trying to get through this.