Interstitial Cystitis Success Story: DW's Bladder Diversion Surgery
Update almost 12 years after surgery
Posted by dwdwdw
Hello everyone!
Hope you are doing well.
I haven't posted here for several years and thought I would drop somethings positive which may be be much needed for many of you who still suffer like I used to.
I was diagnosed with IC at 24, after being misdiagnosed with everything from CPPS, prostatitis (yes, I am male) to psychological stress related disorders....for about two years.
These were the worst two years of my life, it was an absolute nightmare.
I was in constant pain and had the worst discomfort in my bladder 24/7, for two years.
This disease is so debilitating I went from being a happy, fun loving athlete to a bitter, depressed shell of myself who couldn't do any of the things I used to love. It sucked the joy out of every aspect of life. IC is truly an awful, awful illness.
The key is to find the right doctor, it changed my life.
After seeing 10 (yes 10) urologists who performed cystoscopies, biopsies and whatnot for years I finally came in contact with an IC specialist (and professor of Urology).
He scoped me himself (with bladder distention) and immediately made the diagnosis of IC.
I was referred to a colleague of his (who was closer to me) who was just as wonderful and actually understood my suffering.
We tried bladder instillations and all kinds of things for about 3 months and nothing really helped.
This doctor actually listened to me when I told him that I felt like I didn't have a life anymore, and was opting for bladder surgery to at least give me a chance.
After treatment failed he agreed to performing a CUD (continent urinary diversion), or Koch pouch.
This is the most extreme way of handling IC.
This is major surgery, they take about 3 feet of small intestine and create a reservoir in your abdomen. Then they disconnect the ureters from the kidneys and connect them to the new bladder.
In my case they left the old bladder in there, hoping that it wouldn't bother me once the constant flow of urine was halted.
They performed the surgery when I was 26 years old and it saved my life.
I was effectively cured from IC overnight.
All my symptoms went away. This is almost 12 years ago.
I have since lived a completely normal, full and active life. I have fathered three children, I have a successful career and I have traveled the world with my family and just enjoyed life to its fullest.
The surgery have not limited me at all.
I have a tiny opening on my abdomen (size of a quarter) which is covered by a small skin covered patch.
I need to empty this pouch using a catheter every 4-6 hours. It quickly became routine, the catheters can be folded up into a tiny bag that I can just keep in my pocket.
The pouch holds about 8-900 ccs of urine, and you can feel when it is getting full since you get a sense of pressure (not pain). I never time it, I just know when it is time.
It takes me about 30 seconds - a minute to drain the pouch and be ready to go again.
I can even do it in the car haha or anywhere since I am so used to it.
Airplane washrooms, in the woods if you are camping, it is so easy and quick.
At night I do not empty the pouch at all.
It is so discrete nobody even knows besides my closest family.
I played semi-professional basketball for years with this pouch and none of my teammates knew I had it
I realize that this is not the solution for everyone. It is major surgery and things can go wrong.
However, this method has been used for decades and with a good surgeon your chances are excellent.
I have never looked back or regretted this at all. I had no choice.
Life with IC was hell, especially the one I had that never went into remission.
I couldn't drink coffee, juice, alcohol, eat spicy food, tomatoes...anything just hit me right away with this constant burning and pain and that horrible urgency.
I couldn't sleep properly, I coudnt enjoy a movie, read a book the discomfort was always there.
That is all gone now.
I drink 5 cups of coffee a day, can share a bottle of wine with my wife and wrestle my kids or have them bounce on me with no discomfort.
To me that is amazing, I appreciate all these things most people take for granted since I know what is it like to be in pain and get bitter and upset and just be miserable since you cant do them.
Again, this is not the solution for everyone.
I do believe that it is so important to keep your spirit high even at your lowest and realize that things CAN actually change.
Whether it is by surgery or simply finding the right medication or instillation that helps you get into (permanent) remission, it is not hopeless.
I have had those nights when I was literally banging my head against the wall thinking this discomfort would stay forever, that I was never going to get rid of it after two years of hell...
There is a way out, you just have to find it.
Finding a good doctor is the most important aspect. Do not give up, I went through 10 urologist until I finally find one that helped me. I was in Europe at the time and I had to travel pretty far but it saved me in the end.
The only problem I have had from my surgery are two UTIs in the pouch over these almost 12 years.
They cleared up by antibiotics, and were completely avoidable
(I was hiking in the jungle and was sloppy with hand washing. Nowadays I carry medical gloves in those circumstances and have not had an infection in 6 years).
I also had a small stone form in the pouch a couple of years ago (no symptoms, it was found during a check up). It was crushed and removed with no problems. It had formed because I simply wasn't drinking enough apparently.
I hope my story brings some light to all of you who are having a hard time.
I have been at the lowest of the low, and today I am living an absolutely fantastic life.
I am very healthy, in the shape of my life and only go for a check up once a year if even.
I get to see my three kids every day and can be the dad I never thought I could be when I had IC.
We just returned from a trip to the Caribbean, and swimming and snorkeling with my boys with no worries in the world is something I thought I would never, ever experience.
The only positive thing that came of out this whole ordeal is that now you do appreciate things much more, and see everything in a completely different light.
There is always hope, even when things feel hopeless
Why did he choose for bladder diversion instead of bladder removal? He says:
One of the reasons for not removing the bladder was that you can keep your prostate and have normal sexual function. I was concerned that I would still have bladder pains and discomforts, but that is not the case. Also this leaves the option of possibly "reconnecting" the bladder at some point in the future if ever there is a cure. The surgery is definitely a big step, I really had to push for it and today I am glad that the doctors had me try everything else before (to try and put me in remission).
It is a solution for many people however. There are tons of people who live without their bladders and live full, normal lives.
You do adopt quickly, and not having to have a bag is very nice. These pouches has been in use for nearly 50 years, and are much improved today with lower complication rates. For people who are at the end of their rope it is definitely something worth at least looking into, if the only other option is facing maybe decades of pain and suffering. As always, they key is finding a doctor with a big heart whom you trust completely.
Note: The photo at the top of this page is not him, it is a stock photo. He does not reveal his identity on the forum.