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.

Thanks for answering. Last thing I need is catheters. They flare my bladder. Never thought bladder nerves can be affected. Need to really think this through. Quality of life is big for me. Already suffering with other things.

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.

hello all!

I had my jpouch surgery three years ago and have been self cathing ever since. it’s terrible.

Hi Batefootbri,

How horrible! Did you have any bladder issues before surgery?

Not at all! They had me try flomax too and go to pelvic floor physical therapy and do a lot of testing but essentially my urologist said I have nerve damage and it would be permanent.

Oh my, so sorry to hear this. I still have to Cath every  now and then.

Ever since my experience, I always caution people contemplating surgery to read the consent form carefully, and understand what it means when they say:

“Any organ or tissue in the surgical field could be damaged.”

it’s wild that they’re not more careful & that this has happened to more than me!

Interestingly, my big fear prior to surgery, was that the prostate nerve bundle would be harmed when my rectum was removed. So I am grateful that there is no damage to that aspect of my life, but the whole bladder dysfunction presents with additional daily challenges.

I have been told I can’t have a j pouch because I have indeterminate colitis and my pouch will possibly get crohns tissue in it. I would get constant infections and not near a large medical institution. It would most likely changed back to an ileostomy

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.

oh my goodness. the same happened to me… have you heard of eissac tea? maybe worth a try. if I could go back I wish I had started that earlier on vs jumping to the biological and then surgery.

best of luck to you!

I have indeterminate IBD that is probably Crohns and I have had a successful j pouch for 6 years. I know we are all different and it's not the case for everyone, but it's definitely possible to have a high functioning pouch with that diagnosis.

I wish you all the best.

For those with IC, there are new studies connecting Elmiron to IBD. Elmiron not only causes eye issues but colon issues as well.

Oh my gosh - that is not great.  I need to look into that.  I have been on Elmiron for 15 years.  Thanks

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.