IC Surgery Discovery to Date

[Donald Thompson]

In mid 1997 I began urinating more frequently then normal. So I went for a Urodynamic Study. The results showed a low bladder capacity but not too bad at this point. Follow up in 6 months. Early 1998 I went back for the same test and was told my bladder capacity was smaller still but to be concerned. Follow up in 6 months. Mid 1998 I returned once again for the same test and was told my capacity was smaller still and was given Detrol and told to come back in 6 months. Early 1999 I returned for the same tests and was told my bladder capacity was even smaller then before. But this time with a tech at the helm asked what took me so long? I had no answer other then the fact that I was doing as ordered. She said to get to my doctor and have another series of tests performed. So I went doctor hunting.

Trying to find a doctor is easy. Trying to find one that knows what he is talking about is nearly a miracle in itself. The first doctor I went to told me I had a mass kidney / Bladder infection and that was my problem. And he loaded me up with mass doses of Cypro. Even though I told him I had had it before for a period of time. He said it didn't work because I was taking enough and was not taking it for a long enough period of time. Now my body will not tolerate Cypro because it is accustomed to it. For the next 2 years I went from one doctor to the next. Finally in late 2001 I went to see Urologist that specialized in IC. I was glad the clinic was close to the house since even after voiding I was going on the 1/2 hour. I didn't leave the house much without some type of container to go in and had to plan my trips based on the nearest bathroom along my route. And the pain from the pubic area and along the testis made me want to reach down and tear everything out in hopes of some relief. Sleep? It was few a far between for several long months.

In September 2001 I went in for a Cyctosopy with Hydodistension test and was told that I had IC. My bladder was ulcerated and shrunken to the point that it's capacity before bleeding was only 3 ounces. Now I know why I had to go to the bathroom so much. When I asked the doctor the cause of my problem he said IC is an ever changing disease with no real cure and fewer answers. Well that didn't make me feel any better but at least I knew what I had. The doctor said I needed to have surgery.

In December 2001 I went to see the doctor and he told me about my options. Reconstructive Bladder surgery or a Urostomy. When I asked him about the difference I was told only that with the bladder surgery I would have to cath myself through a stoma being made through my belly button opening or wear a bag on my side. And that was it. It was too bad for me that I didn't know about this board and others like it. When I asked him which surgery was better for me he said he could not legally make that choice. So I took the bladder surgery.

In January 2002 I had the Bladder surgery done. After 5 days in the hospital I was told that 90% of my old bladder had been cut away and a new bladder was constructed using a section of my large intestine. I had a #18 French Red Catheter sticking out of my belly button and stitched off to one side. I had 3 drainage tubes coming out of my side both left and right. Luckily for the hospital they used a recirculated air system and the windows couldn't be opened. The pain was unbelievable. The epidural was not hitting the right spot. And I felt every staple they put in me. All 75 of them {:-( The staples ran about 1 inch above my navel circling to the right around my belly button and running down my stomach stopping just short of my pride. I was shocked. I was given a Morphine drip right away and several Demerol Shots for the severe pain I was in. Temp hand restraints were used for my safety since they now knew they goofed in the pain management department big time. And I was a very unsatisfied customer indeed.

On the 6th day I went home tubes and all. I was given Tylenol with Codeine for pain. And as one might guess it was worthless. I spent the next 6 days going to the ER for Demerol shots because no one would give me anything stronger. They said they were afraid I would fall during the night and rip open my surgery site.

On the 10th day I went back to the hospital and had the staples removed and all the tubes except the one in my stomach. I was told that it had to stay in for another week. Went I asked how I was to go to the bathroom if I had to go they told me. This is an indwelling catheter and to go just pull out the cork and go over the toilet. Well that night I fell into a deep sleep and woke up having to pee like a race horse. I pulled the cork and nothing came out but blood and white gunk. No Pee. My god I have to cath myself. I set on the toilet and nature beat me to the punch. Before I could get the catheter in I exploded in a flurry of urine blood and white gunk. I'd never felt so relieved in a long time.

The doctor was mad because I had went penially since I was not to be going from that end any more. I was to go through my new stomach stoma site when I had to urinate. But I was glad to know the option was available to be in an emergency. But after a few times going normally I have since stopped unless I strain really hard. Which places undo pain on my testis.

Now in July 2003 my bladder after testing is right back to about 5 ounces. The norm I think is around 16 ounces. The IC has returned to destroy my newly constructed bladder. I cath myself via my stoma about 10 to 16 times per day and do a 500cc Irrigation Solution Flush of my bladder 2 times per day. Yes a flush. The flush helps wash out the gunk ( White Sludge ) that is constantly produced by the large intestine section that was used to create my new bladder. Had I have known what I know now I would have elected to have the urostomy instead. But they say hind site is 20/20. I guess there right. I still suffer from severe pain on and off again not to mention the chronic urgency that haunts me dailey. Any thoughts of going to another doctor lead me right back to the doctor that did the surgery in the first place. So as he said " I am stuck with you and you with me " " Like it or not ". Since I can't find another doctor that knows about this in Syracuse, NY that accepts Medicade I guess he's right. But it is a shame that I have to wait for an emergency ( severe emergency ) to arise beofre someone will listen to what I have to say.

[webslave]

The IC has returned to destroy my newly constructed bladder.

I'm sorry that you have suffered so much, Donald.

This is an object lesson to the rest of us. Surgery is a (poor) last resort.

[Paso]

Dear Donald,

I am sad for you. Will you do a "pouch" bladder surgery next?

I really hope you will get an acceptable ending to this.

/Paso

[Paso]

I am sorry Donald. I missuderstood your surgery. my question is, will you do an "outside" poach now?

/Paso

[Donald Thompson]

Hi Paso.

I'm not sure. Right now my surgeon and I are having a conflict of intrest so to speak. He wants to reconstruct my bladder over again. And should my IC reflare again then he will think about another course of action. My opinion is why be a guinee pig to a surgery that didn't last any time the first time around. What makes him think this one would be any different for me. I think it's all about the money. Not to mention the fact that I know no one in my current surgical condition ( someone who has the same surgery ) to base a good decision on. But thanks for your concern.

[Donald Thompson]

I am sorry Donald. I missuderstood your surgery. my question is, will you do an "outside" poach now?

/Paso

Hi Paso.

I'm not sure. Right now my surgeon and I are having a conflict of intrest so to speak. He wants to reconstruct my bladder over again. And should my IC reflare again then he will think about another course of action. My opinion is why be a guinee pig to a surgery that didn't last any time the first time around. What makes him think this one would be any different for me. I think it's all about the money. Not to mention the fact that I know no one in my current surgical condition ( someone who has the same surgery ) to base a good decision on. But thanks for your concern.

[Paso]

Donald,

I have read multiple sucess stroies on "outside" poaches. Please check this site
http://blcwebcafe.org/

I know it is for cancer, but disregard from that. Check the patient stories. Maybe ou already did.

/Paso

[Donald Thompson]

Thanks for such an informed site Paco

[conradin]

I'm so sorry. Your post make me cry....from anger.