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Crohn's Stricture and J-Pouch
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Picture of Mental Kase
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Hello Friends-

An update, J-Pouch for 20+ years, chronic Pouchitis, Cuffitis and pain. Like most, some days are tolerable others not so much. The last few months have been the most challenging times I can remember. recently culminating in a first Bowel Obstruction (though it has been speculated that this is not new only that the current episode did not resolved itself as others likely did). After some diagnostics including scopes, biopsies, CT and Ultrasound it seems that I now have Crohn's disease at the terminal ileum right above/at the anastomosis to the pouch. My GI Docs say they are seeing more and more of this situation; patients who present initially with UC then have J-Pouch surgery only to develop Crohn's at the terminal ileum some years later.

So, the terminal ileum has thickened walls, moderate stricturing, inflammation and mild infection. I was told by a J-Pouch friend that these strictures generally do not resolve, don't improve with or without meds and generally follow a predictable course that ends in surgery -bowel resection.

Q: Do these Crohn's strictures eventually require surgery?
Q: Do these strictures reappear in the bowel after surgery?

I'm currently taking Azithioprine 250mg/day, and 10mg Prednisone. I continue to have symptoms of a partial bowel obstruction, fever like, weakness, bloat, gas, difficult swallowing, liquid stool with traces of blood and a general feeling of total crap.

Any thoughts appreciated.

MK-


...sometimes I hate my guts...

1980's - UC
1992 - J-Pouch
2011 - Crohn's
 
Posts: 360 | Location: Portland, Oregon | Registered: September 09, 2010Report This Post
Picture of Mental Kase
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.... I forgot to add that my Surgeon urged my other GI Docs to look carefully for small bowel cancer. Those words made me very anxious. So far there have been no tumor markers, no evidence of cancer, fingers crossed. Any thoughts on small bowel cancer.... Is this a common concern?

MK


...sometimes I hate my guts...

1980's - UC
1992 - J-Pouch
2011 - Crohn's
 
Posts: 360 | Location: Portland, Oregon | Registered: September 09, 2010Report This Post
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Hi sorry to hear about your issues and can understand as I am in the same boat it would seem, had UC in 1985 by 1987 had a working j pouch good for a few years then problems with obstructions so no fibre ie fruit whole grain products etc. for many years last year could not eat any solids so a year of ensure yogurt ice cream. After all the tests and biopies and surgery for adhesions that did not help the problem the result was a finding of Crohn's and idiopathic IBD in the pouch and inflamation of the inlet to the pouch which I believe would be the terminal ileium. Am on 20 mg of pred. which helps can not go lower or I obstruct tried methotrexate no help just this past Fri started Humira hope this helps so I can quit the pred. am on a waiting list since last June to see a surgeon in Toronto Can. to get some ideas one of course is diverting ostomy and leave the pouch in place not to keen on this. I live on the east coast of Canada and all the colo-rectal surg. are over worked and refuse to see you which is why I am going to Ontario at some time in the future. This problem seems to be common unfortunately. Shawne
 
Posts: 37 | Location: PE | Registered: January 02, 2012Report This Post
Picture of Mental Kase
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Shawne-

Thanks for the response. Seems we are in a similar boat. My GI Docs say that it will take a couple of months for Azathioprine (Imuran) to reach a therapeutic blood level so the 10mg of Prednisone is intended to keep me from crashing in the interim. Unfortunately I feel I am crashing so I upped the pred to 20mg over the weekend and will call my Doc on Monday morning.

I've had a suspicion for several years now that there was something besides Pouchitis at work. The Cipro maintenance plan never really seemed to work very well anyway.... I'm glad they finally Dx'd Crohn's. It answers why I've been feeling so much more miserable that my 'moderate' level Pouchitis would warrant.

I have some friends lining up eager to donate to 'Fecal Implant' therapy, they think they are so funny. What a sick group! I think those therapy's require a Colon if I'm not mistaken.



Hang in there, I will too!

MK


...sometimes I hate my guts...

1980's - UC
1992 - J-Pouch
2011 - Crohn's
 
Posts: 360 | Location: Portland, Oregon | Registered: September 09, 2010Report This Post
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