I'd try the Remicade (and other meds too if it does not work). Even if you revert to an ileostomy, the Crohn's will still be present, but probably more manageable.

 

Remicade has its potential risks, as does anything.

 

Jan

 

Hi Crystal, 

I have a similar story. I take Humira and Imuran combo meds and its fairly well-controlled. Try that first!!

 

Good luck!

 

Is truely Crohn's or Crohn's like symptoms?

See here: http://www.ncbi.nlm.nih.gov/pubmed/9351572

I hope the ge is beware that Crohn's is a entity he should diagnose histologically (a good pathologist is needed) and that endoscopy is not sufficient to say it's Crohns.

You have fistula and/or granulomas?

In any case if Crohn's or Pouchitis you had to follow the protocols which in this case are quite similar, you try the antibiotics, endocort and if nothing succeeds, regular Crohn's therapy like biologics. 

No need to think on perm. ileo before everything is attempted, moreover you should add to the recipe a clean diet (no dairy, wheaten, sugars, soda, etc.) and probiotics. Basically a paleo-diet plus gluten free foods.

Thanks for the replies
When I saw my surgeon she also did a catscan along with an endoscope..She saw chronic inflammation along with ulcers,but only from the j-pouch down..She assumes its Crohn's ..Also because of the other issues I am having..Just in the last year I started having severe cramps,feeling unwell again,developed a fistula, fissures almost like when I had UC, but not as bad..I have been on Cipro and Flagyl on and off again for the past year..My surgeon wants me to try Remicade to see if the fistula will go away..She said if that doesn't work the only alternative is a permanent bag, because the chance of a fistula returning is likely..
I have had my J-pouch since 1999 and really want to keep it..I am just tired of being sick and tired..
I will also try changing my diet and see if that helps any..

I've had my pouch since 1991, and I have no intention of removing mine, even with the fistula.  My pouch has never looked bad, though, just a few apthous ulcers here and there, but all pouches have some degree of inflammation that is just what it is, since small bowel was never meant to hold stool. 

 

My GI has said to me that the mucosa of pouches are mutating to more "colon-like" readings on pathology reports and there is some degree of thought that that is triggering our bodies to again want to "attack" that new thing in there acting as a colon.  He said he's seeing this more and more with "older" pouches, not older people, that as the pouch ages, things are happening.  People like myself who had relatively no issue over 2 decades are coming back with strictures, fistulas, increased pouch issues, etc.  It makes sense; when I had the procedure, they told me I'd be "cured," and I kinda was for a long time... but now he doesn't tell people that, or use that word.  He said he tells all patients contemplating J pouch that at least 1/2 are going to have some complication (be that a stricture, pouchitis, etc.) 

 

I wouldn't have changed my decision/path, though.  I deal with the fistula as best as I can, and I take meds again... not my ideal plan, but what can you do? 

 

I was also feeling as you were, that things weren't "right" for a time before the fistula popped up.  I kept telling my husband it was like having "colitis-light."  I certainly wasn't as ill as my UC days, but I was starting to feel just not right, bloated, mild fevers here and there, just *wrong* in there, sort of like how I felt "back in the day," but not completely.  I eventually showed increased sed rates and CRP.  I'm on Humira (which I don't think is really working, at least on the fistula (though I don't have that "sick" feeling anymore), and right now I'm on a steroid taper (again, blah) to calm down the fistula and granuloma bump that sits next to it.  So right now, I feel pretty good... but as soon as the steroid ends, it'll be back to being sore again, I'm sure.  Steroids are so bad for you, but we haven't found anything else that works for me when things are bad. 

 

 

 

That is exactly how I feel
I also thought when I got my large bowel removed I was cured of UC.
But in the past 5 years things started happening again; like you explained..How do you deal with the fistula? I find it extremely uncomfortable and upsetting.
I will probably try the remicade.i am just waiting for my insurance to approve the treatment.I am hoping it will calm everything down and heal the fistula.
Thank you for your reply.

"Just keep swimming" has become my motto. Mine is *only* perianal, and when it hurts, man, it HURTS. I liken it to how a fish must feel when a hook is through its lip. Every walking movement tugs on it.

Steroids make that stop, which is why they do believe it's an IBD fistula. Plus it has no connection to the anastomoses, another ding-ding for IBD. I love steroids for the relief they give, but I'm so aware of the systemic hand gun they are, and all the badness they can bring. I use a pad at the site, and I have a seton. They can stick setons thru RV ones, too. Can bring some relief to keep it draining.

Please message me any time. I know how isolating this can feel, dealing with these things for 3 years. It's not easy.

Thank you very much

Hi,

Your stories sound similar to mine!! Had j pouch formed 1992 for UC and developed all kinds of problems about 5 years ago and re-diagnosed with Crohns.  Is it really Crohn's or an older pouch problem...who knows?!? Remicade was a lifesaver for me. I loved that drug. Unfortunately, I developed lupus like antibodies about a year ago and that was the end of remicade for me. Tried Humira and cimzia but have had fistula/abscess formation on them so I am planning for perm ileostomy. I despise the fistulas and setons and admire the people who can endure the annoyance.  This is a totally personal decision but I definitely think the Remicade is worth a try. I wish you the best of luck and many more years/ decades of happiness with your pouch!!

Your situation is similar to mine, dx with UC 20 years ago, surgery the following year and the last 15 +/- years have been relatively smooth, and then problems started popping up. Tests revealed Crohns, and my doc had put me on first 6-MP and then Humira, which helped somewhat in reducing inflammation and symptoms, but not completely.

Now I am trying to improve things with my diet, so far, eliminating all grains has been helpful, and when I do eat bread, I notice some bleeding. It's stil not where I want it to be, but getting better.