I don't know if I had chrons  but the surgeon said it was a possibility. 

Never had the test to find out. 

But I did have terrible problems for two plus years. 

I don't know how some put up with the pouch.... A dysfunctional pouch for longer periods without doing something except taking meds to see if this or that works while suffering. 

My opinion and mine only.  2 plus years was enough for me to suffer. 

I had mine removed a month ago.  I do not regret it.  All my suffering stopped.  Immediately. 

I had urges to go constantly.... Chained to a toilet at work and at home.  I was taking meds that didn't work and just flat out suffering. 

Enough is enough. 

I am glad I did it.  I feel better.  I am gaining my weight back... I lost 50 pounds! 

I feel good.  Now.  I have to get used to using the bag but I know now after a little while it will become second nature.  

I am. So much better off now.  I should have done it sooner.  But I was hard headed.  

I suffer no more.  And am on the road to better health.  I can go out and see my four grandkids... Five... One coming in days... And enjoy them.  No worries. 

A Crohn's diagnosis does not dictate whether or not the pouch should be removed. Actually, since your risk of repeat small bowel surgeries increase with a Crohn's diagnosis, the goal is to preserve as much small bowel as possible. But, if your pouch is constantly inflamed, it probably isn't functioning well in regard to absorbing nutrients, so that is in favor of removal.

You mention being on antibiotics and suppositories, but not other Crohn's medications, such as biologics, methotrexate, oral mesalamine, or budesonide. I would imagine you have tried those already in order to try to heal the fistula. But, if you have not, I would try those before opting for pouch removal. The reason being that you may well still have to take them even without the pouch. But, it is not a given, and pouch removal could mean a prolonged remission. I can sure understand just wanting to be rid of the pouch and its aggravations.

If only we did have a ctrystal ball!

Jan

Have you tried any of the biologics? That is definitely worth trying before giving up on your pouch if it's an option for you. 

Jan (and Brewbirds), none of my docs have been interested in trying the meds you noted.  I have been on oral mesalamine, and am planning on asking my GI to go back on (Shen took me off 5 yrs ago).  I will discuss any other options with local GI  next mo. 

My CRS indicated - with "100% certainty" - that my fistula will not heal without a big surgery (redo or removal).    It's a complex fistula, with a sharp bend and sinus tracts off of it, to my understanding.  She also feels I shouldn't be concerned with biopsy results or pouchoscopy findings, and I should focus on my quality of life regarding whether to remove pouch or not.  Frankly, I want to be proactive and avoid more fistulas - main focus right now, especially considering Crohn's dx.

Now that things have "settled" after the EUA (oh my I felt sick for a few days after that), I have time to think a little more clearly and intend to spend even more time thinking this all through.  My super-great fear is that after removal, I might think - my god, why did I do that, things were so much better than now ....  Probably not an atypical fear.

Richard, so very glad things have worked out for you.  I read positive stories like yours and that is something I hope for in my case, if I do get the nerve up to go through with this surgery.

Thanks for your responses.  I've been following several other discussions regarding removal, and as usual, all so helpful.

Your CRS is offering sound advice regarding a quality-of-life focus. Crohn's tends not to cooperate with "proactive" surgery (or with *any* plans you have for it). Crohn's often goes better than folks expect, but it's not predictable.

Fistula surgery should, I think, be approached with great caution. It sometimes works out well, but it's also one of the quickest ways to make a fistula worse. Much depends on the location and treatment alternatives.

Totally agree on your fistula surgery advisory, Scott.  Options have been provided to my by my surgeon in that respect, but she has not given me enough warm and fuzzy feelings to think that any surgery would have a positive outcome.  And I appreciate that from her.

"It's a complex fistula, with a sharp bend and sinus tracts off of it."

This says volumes, I think. The more complex, the less likely it is that surgical repair would be successful. This is true even without a Crohn's diagnosis. The Crohn's issue mostly takes a pouch redo off the table, since there is a higher risk of failure with that. A number of people here have had successful salvage surgery via redo after years of problematic sinuses and fistulas, but Crohn's really throws a wrench in the works.

I agree that the focus on quality of life is the best idea. A second opinion from someone with experience with pouch repair/redo could help you wrap your mind around your best plan. Still, medical management could be an option, even if it does not heal this mess, if it simmers things down to a manageable level.

Good luck sorting this out. Sounds like quite a quandary!

Jan

Thanks Jan.  A surgical repair for this fistula is definitely out of the question.  I was told that even pouch removal would not guarantee the demise of the fistula.

The plan, for now, is to try medical management for awhile, and make a final decision by the 4th of July.  Ha!  We'll see if I can stick to that.

Hope springs eternal! 

I can't imagine mesalamine being very useful though, because it does not work so well with Crohn's. You might be a good candidate for Entocort (budesonide) to help induce remission. Plus, there are many other meds you have not tried yet.

http://www.mayoclinic.org/dise...eatment/con-20032061

Jan

Thank you, Jan.  That information will be so helpful when I see my GI.  And all in one document!