Crohns dx?

I had (and still have) an uncertain diagnosis, and a couple of surgeons turned me down for a J-pouch. I found a good surgeon (now retired) who was perfectly willing to do it, and it's served me well for about 13 years. I did have to travel (a plane ride away) to get it done. I had a one-stage procedure, which was convenient, but less commonly done now since it seems to be a bit riskier. I know that Mayo is generally opposed to J-pouch surgery if there is a suspicion of Crohn's, but I don't know how CC surgeons think about it.

 

Pouch failure is more common in Crohn's, and it's pretty miserable when it happens.

I concur with Scott. From what I've heard, the surgeons at CC are fairly open minded about a j-pouch with an indeterminate UC diagnosis. As long as you do not have any active small bowel disease or perianal disease you may be considered. If the CC is an option for you, I would at least get a consult there.

 

Jan

Yes Jan you are correct. I just made a trip to CC and can confirm they will do JPouch on underdetermined UC or Chrons so long as the small intestine is not diseased etc. I definitely suggest a consultation at CC if you can make the trip. You won't be disappointed, they are wonderful there.

After my first surgery I was told that I was in a gray area.  It could be Chrons.  It could be UC.  I remember the surgeon said we would call it UC and do  the take down. I was happy to go along with that.  Now I've had my pouch for 27 years with no sign of disease.

My sister had her first surgery last Monday and the surgeon  wasn't sure about the diagnosis.  I explained  my situation to one of the interns because I wasn't able to see the surgeon. I was also going to suggest that they might compare my slides to my sister's because I think it would be helpful.  Will the slides  still be at Yale New Haven?  That's where my sister had her surgery too.

Theresa

Gee, it would depend on whether they do this sort of pathology in house or send it out. Plus, what they do now may be different than what they did 27 years ago. Your path reports should indicate where they were done. After this much time your records are likely archived.

 

Jan

I think Yale does their pathology in house.  And in fact I just went through this at Yale where my pouchoscopy pathology report was looked at for Crohn's vs. pouchitis and the 3rd different pathologist in 3 states and 2 coasts concluded "inconclusive."  The other two pathologists were in Mount Sinai in NYC and in LA when the path report was sent out there for a second opinion at the behest of my then NYC GI.

thanks so much for all the advice.  my slides of my colon were destroyed after 10 years.  So just recently, since my surgery was in 05. I think I would head out to CC for a surgical consult if I was to ever seriously think about a reversal.  I feel great and my ileostomy works pretty good.  Is it an inconvenience at times...yes but I am sure a j pouch can be too.  Its a tough decision to make...I would sure like a flat stomach with no bag but not knowing for sure how a reversal would work for me is frightening.  I am  sure I would get down right depressed if I ended up worse off than I am now and kick myself if things didn't work out for me. Losing some of my small intestine for nothing.  I wish the surgeon could say you know everything looks great and I am positive you will be glad you did this and feel awesome!!! but we know that's impossible.  uuggg!!

I understand why you would be hesitant.  My pouch isn't great. It's okay.  I'm hoping my sister will do better because she will get a j-pouch not an s-pouch, she probably won't have less bowel because of a fistula, and she has a doctor who has been doing the surgery for years.  I  was one of my doctor's first pouches and he was a trauma surgeon.

Theresa