www.incontinentsupport.org

I have not told many people here this but I am at the point where this may be in my future. For those that may be new and don't know my situation, I have a chronic bladder disease that causes urgency, frequency and pain. It has progressed to incontince. For the past several years I have explored just about every treatment option for my condition and have come to the point of managing my symptoms with medication and diapers. I have come to the realization that the incontince can not be cured without causing a significant increase to my pain symptoms. A few months ago my wife asked me if there was a way to allow the urine to drain more freely if that would help with that pain symptom. I have not found any cases where someone with IC has gone this route but I felt she was on to something.
After much searching I think this is a good direction to look for a better quality of life. For me, when things are empty, I feel so much better. Now because of my job and PB&J can testify here, being a fireman makes it impossible to have a catheter or a bag attached to your leg or belly. A diaper is about the only way to make things work with such an active career. I love what I do and it is who I am. I have been doing this for over 20 years.
Anyway searching around I found a sphincterotomy may be the answer I have been looking for. The way I see things is like this, if I am going to have to wear a diaper anyways I may as well trade what little control is still left for a chance ton be more pain free and get a better quality of life.

I mentioned this idea to my old doctor and he said no, he would not do it. I think I have finally found a doctor that will listen to me and my point of view on this and the reascent test I had may help to prove my case. The choices I have now if I can go this route is stent, botox or surgery. The new doctor has already said the stent is a bad idea because they are prone to move. The botox and surgery are still on the tables but he seems to be more focused on curing the incontince first and foremost. The next time I see him I will explain that fixing then incontince I believe will cause more pain and that is not what I want.
I am sorry for such a long post but I have been trying to find a way to tell my friends here and everyone else that has always been so supportive what I was thing and the direction I wanted to go. I am worried on the surface this sounds crazy and extreme but I am desperate to find the best was to live with this for the rest of my life. Incontince is manageable. I can make it work and if you swallow your pride just a little you learn a diaper will not stop you from ANYTHING you want to do. Pain leaves you with few options. I can take hard pain medications to manage it but at what cost? There is no way to take this stuff while I am at work and I can't take it before I go in and have it lingering in my system. To me, it sounds like a good trade.

Again, sorry for the long post. This has b3n weighing on me for a long time and I think I am just a little closer to finding out if this is a real option for me.

Rope

Rope,

Thanks for sharing. I wish you the very best of luck in finding a way to reduce your discomfort.

Rope, I also thank you for letting us be here for you. I'm happy that you have taken control of your situation and are proceeding toward a positive and workable solution. I wish you all the best.

Wetters

Rope, you have made a serious decision and thanks for telling us. The no or less pain option definitely is the way to go.

We are here for each other.

--John

Thanks to everyone that replied and to everyone that took the time to read. I really appreciate the support from your. Part of me is thinking this is overkill AF if I were using a shot gun to take out an ant hill but if I take emotion out of the equation,not seems like an fair trade and a over all better quality of life. I'll keep you posted when I learn more.

Rope

I certainly agree that reducing pain would be a good idea if it can be done. What is the problem with your bladder by the way?

The botox choice might be a good idea to start with - injecting the sphincters would give the effect of the sphincterotomy for a period without actually having the surgery so you can see how things work. The trouble is the a sphincterotomy is not guaranteed to result in complete drainage. My urologist turned me down on this one as she reckoned that it would not sufficiently empty the bladder meaning that I would have a lot of leakage but still have to drain some with a catheter.

Have you thought of a urostomy which would result in removing the bladder, the cause of the pain, and draining the urine into a bag on your belly. It might sound drastic but would make you effectively continent and pain free.

Hi wheels,

What I have is interstitial cystitis. It doesn't typically lead to incontinence but for me it did. Most prefer to stay close to a restroom all the time. That was not something I could do and keep the career I have.
My preference would be the Botox as well. Going this route with what I have is not the norm. But especially after the UDS I get such a relief in the pain and discomfort when I pee or drain I know for a fact getting the pee out helps.
I also be thought about just having the bladder removed. It would solve the pain for sure but from what I have researched, the prostate and part of the urithra would have to come out as well. I am only 41 and it may sound selfish but I am not ready to lose my sex life. Not to mention the fact I would have the bag on my belly. Again, this would make things very difficult at work.
Another thing I thought about that was if having the sphincters treated does not do what I am hoping, having the bladder removed is still on the table. Things would not work out the other way around.

Rope, I have heard this advise time and time again. you have to do what you think is right for you. who am I to say what I find right for me is the same for you.

As for being selfish, your not, as long as everything else is working why would you want to jeopardize your sex life. I forgot the name of the surgery, but one of my urologist said they could do a surgery which would squeeze the urethra with a pump like device. I told him NO everything else works and I don't want you cutting a nerve or doing something else which would cause more damage down there.

Rope\

I sure hope that things work out for you.
Being in pain SUCKS!

Schoppy

Rope, I can relate to the pain issue, as well as the urge, both suck. The doc thought I may have had interstitial cystitis, but after the scope procedure, he could clearly see it was Prostatitis, but the symptoms are very similar. Interstitial is rarer in men too, but some do get it. Keep on with the battle, it will work out in the end, but it does get old really fast, more so when you are active. Hope they can get the pain under control, that was the worst of it for me, being wet is minor in comparison. Puffy

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Puffy
BC, Canada
Fighting the "Bladder Battle" since 1995