Thursday, June 29, 2006

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

Tuesday, June 27, 2006



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.


Be Your Own Advocate when it comes to your Health.

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!

Monday, June 26, 2006

Hormones and Phantom Urgency

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.


Sunday, June 25, 2006

Explanatioin of Supplies Used After Bladder Removal

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

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.

Saturday, June 24, 2006

A few hours of happiness!

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!


Trying to Balance the Scale

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.

Friday, June 23, 2006

Depression from increase in Medication

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

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
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!

Thursday, June 22, 2006

A Day In Bed

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.


Wednesday, June 21, 2006

I am feeling real down

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.


Tuesday, June 20, 2006

Setbacks during recovery

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


Sunday, June 18, 2006

HOME but not quite settled yet.....

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.


Saturday, June 17, 2006

Still in NY

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.

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.

Wednesday, June 14, 2006

I guess I am leaving Thursday sometime instead of tonight.

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.


We are leaving for NYC tonight and driving half way.

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.


Tuesday, June 13, 2006

Why some of us still have pain after bladder removal?

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.


Monday, June 12, 2006

I have gotten my pain management appointment moved up.

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"


Sunday, June 11, 2006

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


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.
Thanks Mom,

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.

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.

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.

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.........

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!

Tuesday, May 30, 2006
Finally some RELIEF! Current mood: cheerful Category: Life
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!!!!!!!!

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?

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.

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.

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......

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.

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.

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!!!!!

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.

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.

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.

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.

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 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!

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.

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.

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.

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.

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!

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.

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!

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!

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.
Thank You All for your continued love and support.

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.

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.

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!!!!!

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.