It's been a long while since I visited this discussion group. I've got a big decision to make about surgery and have decided to post my questions on this forum, as I get the impression that many of you have been down this road already.

Brief history: I'm male; almost 44 years old. I got diagnosed with UC at age 30. Spent 10 years on steriods, immuran, methotrexate, remicade, ...you name it. Nothing worked for very long. During this time I was rediagnosed with Crohn's Colitis. Finally had the colectomy at age 40, with a loop ileostomy, just in case. Pathology came back to say it was UC. So I had the j-pouch built and the loop taken down. That was 3-1/2 years ago, and for pretty much every day since I've suffered from pouchitis (confirmed by scope). I've tried all sorts of stuff for the pouchitis - Cipro/Flagyl, VSL3, acupuncture, yoga, but stayed away from the hard stuff (steroids, etc.).

Now, for the point of this posting: I need advice. I'm planning on having surgery because I can't take the pouchitis any more and I don't want to risk the effects (whatever they are) of long-term antibiotics. My surgeon (a very prominent Canadian colorectal surgeon) has given me two options: excise the pouch or just bypass it with a loop ileostomy. I understand that if I go for the bypass and leave the pouch in, there's a slight risk of cancer over the long term at the anus. But it's an easier surgery that has less risk of damaging other nerves, leading to impotence. My surgeon tells me however that I wouldn't have problems with pouchitis if I leave it in. I find this hard to imagine, since the rectal stump was constantly passing blood and mucus between surgeries last time, when I had the loop ileostomy.

I would appreciate any thoughts around what makes more sense to do at this point: Leave the pouch in and bypass it, or excise it and close up the anus.

Thank you sincerely,

Bummed out in Toronto

Email or PM JillM about this. She was pretty much told the same as you and left her pouch in. She suffered for a few more years and finally had the j-pouch removed. She now has a permenant ostomy and she's as happy as a clam. You CAN get pouchitis or pouchitis-like symptoms in the 'unused' pouch.

Good luck with your decision!

kathy

My husband(32 years)had the same problems as you with chronic pouchitis; his surgeon finally told him he had no drugs left for Paul to try. The doctor gave him the option of leaving the pouch, but really recommended excising it and closing the anus. He left it up to him. Paul just had the end ileostomy, pouch excision and anal closure surgery this Jan. 4th, and the change in him is amazing even at this early stage!
The end ostomy is much easier to deal with than the loop (so far, anyway). He's changed his ostomy bag 4 times now, no leakage, excoriated skin, ulcers, rashes, etc., which he dealt with right from the start with his loop.
His recovery so far has been textbook (for once). You deserve the same, and we wish you the best. Thinking of you during this decision-making time.
Betsy & Paul

There are some who do OK with a defunctioned pouch, but there have been some others here where it not only did not work out, it was virtually devastating. I suppose it all depends on how much disease is going on in there and what risks you are willing to take on. Either way, the decision you make will not be a "free ride" by any stretch of the imagination. Wouldn't be nice to have a crystal ball or that magic remote as in the movie "Click," so you could fast forward to the ending to see how things would work out?

I would ask your surgeon the percentages in his experience on this topic. How many were able to live long term with the defunctioned pouch and how many wound up having it removed in the long run. Understand if you leave it in, you will still produce mucous and have to have periodic bowel movements. If the rectal cuff continues to be inflamed, you would have to continue with suppositories or enemas to treat it. Also, the fact that the pouch is diverted can lead to diversion pouchitis. Ask, lots and lots of questions.

Jan

Went 6 months with a loop waiting for Dennis to get strong enough for the exicision. For him, it really wasn't much better than no ileo at all. Excision has made a HUGE difference.

But everyone is different and no answer will be easy.

Best to you whatever you decide.

And Besty---- love it "textbook for once." Kind of neat isn't it....... Still waiting for the other shoe to drop but starting to feel perhaps all the shoes are finally on the floor!

Kathy, Betsy, Jan, and Joan:

Thanks to each of you for sharing your experiences and advice. I'm certainly feeling more hesitant about the defunctioned pouch after reading your responses. And I continue to wonder why my surgeon would claim with such confidence that I won't have any problems with the pouch.

Can someone please clarify for me: Is the loop ileostomy larger and/or more protruding than an end ileostomy?

With appreciation,

Paul

Paul,

A few things...why did your dr not offer you an end ileo and leave the pouch in? That is what was done for me initially. The end ileo is much easier to deal with and I don't dehydrate with it like I did with the loop.

Next, I had lots of problems with the pouch being left in. I had pouchitis for 18 months with the disconnected pouch (my surgeon told me it couldn't happen too). I discharged 4-8oz of mucous from the pouch EVERY DAY while it was disconnected (I was told 1tsp a day was normal). I continued to have pain and cramping. I developed all kinds of new problems after the disconnect. All of this, I was told, was highly unusual...

Once I had the pouch out, the one advantage I had was that I already had an end ileo. So, if you can get the end ileo, you could try just disconnecting, and then if things don't improve, go back for the excision.

I've been 100% healthy since the pouch came out and I can't tell you how much I'm enjoying life with the ileo. Eating what I want, doing everything I want, not thinking about being sick, sleeping through the night, taking no drugs (except the occassional Immodium). Life is good!

Let me know if you have questions.

Jill,

Sounds like you are doing well; I'm glad to hear. I don't have a good answer for your question. It's possible that my surgeon did offer an end ileo and I got it wrong. I understand how these are formed differently, but I'm actually not sure how the two differ in look and function.

Thanks for your thoughts.