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Hi Toona17,

I sent you a private message.  The JPouch really occupies the area that the rectum used to be.  It’s really not that large and did not interfere with my bladder (specifically).  They are in the pelvis doing the surgery (they may move your bladder around during the surgery a bit), but when you are done it seems to sit right above your anus.  The JPouch is maybe about 10 inches long.  This question would be great for the surgeon.  You can probably get some pictures of JPouch placement off of the internet to orient you a bit, but be sure to ask and also tell them about your IC.
Best Doug

Hi Toona,

You are wise to be concerned.  It’s a very tight fit in the pelvis.

as a result of my first surgery my bladder nerves were damaged and I wound up with acute urinary retention as I could not voluntarily urinate.

after 6 weeks the foley was removed and I was taught to self catharize.

Five months later I was finally able to urinate on my own.

Two years later and I still have some after effects.

Last edited by New577

I have severe interstitial cystitis. The j pouch hasn't impacted my ic. The only problem was that after the catheter was taken out a day or two after surgery, my bladder kind of froze. I could empty it, but it could take up to 45 minutes because it was really hard to relax my bladder. They gave me Flomax and it really helped. For my second surgery (take down), I started Flomax right after surgery and the catheter was left in longer. I didn't have any problems. I know it seems kind of counter-intuitive for ic sufferers, but leaving the catheter in made a big difference. Plus, getting out of bed can be quite painful after the colectomy, so the catheter allows you not to need to get out of bed to empty your bladder 20 times.

Hi Toona,

I did a bunch of research on this, and I not the authority, but I read a large study that showed that Indeterminate Colitis patients had about the same outcome with a JPouch as UC patients.  I have Indeterminate Colitis and sought a JPouch. As long as the indeterminate Colitis patients never had any small bowel involvement or perianal disease it appeared okay. I am not sure if every surgeon would agree, but you can probably Google Indeterminate Colitis and JPouch to find some studies.  The worry is that Crohn’s could show up in the JPouch later on.  If you feel the JPouch could be something you want, you may want to consult NYU or Cleveland Clinic or Mayo Clinic and see JPouch surgeons and they would give you the best data.  It may be a pain to get there, I don’t know where you live, but you may need a top center to evaluate your case.  With all of that said, I am struggling with my JPouch and just like you I also have Interstitial Cystitis - crazy bad luck.  The cystitis has been worse than my colitis in many ways.  Some days I will poop 20 times and pee 30 times in the same day.  I have suffered with Pouchitis since the beginning of my Jpouch and the antibiotics have been hard on my bladder. They work to fix the Pouchitis beautifully but I need the antibiotics chronically and my bladder gets angry.  Sure a JPouch works so well for many, but a few people seems to suffer with it.  I am not sure how bad your colitis is, but you may want to seek a few more qualified opinions before you rule out the JPouch.  If you ultimately got an end ileostomy you would have to wear a bag (which has drawbacks), but you could avoid some complications of the JPouch.  People seem to do well with an appliance and to be honest I may opt for one in the next year or so if I can’t sort out by Pouchitis vis-à-vis my bladder.  In the end, I will feel like the JPouch was worth the try either way for me.  We will see.

@Toona17 I had my J-pouch surgery over 20 years ago with Indeterminate IBD. I was turned down by some surgeons at places like Mayo, since they were worried about the possibility of Crohn’s. I ended up finding a very well trained and experienced surgeon in Los Angeles, and I’m very glad I got a J-pouch. I also knew that I probably had a higher risk of pouch failure.

Hi Doug K,

I was on Elmiron for about 18 years. I went off of it a couple years ago because of the permanent eye damage it caused. (This type of eye damage is only caused by Elmiron and leads to loss in eyesight). It's now coming out that it also causes IBD. I think that's what happened to me. I had a very strange and sudden case of IBD that, of course, led to a colectomy.

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