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

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.