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i was over due also, but had routine scopings today, i called my gastro wed. complaining of frequency, urgency, and intermitant abdominal pain. so friday being today, i was scoped/squeezed into drs schedule.


as an fap'er, i also have microscopic colitis as a diagnosis after todays procedures. gastro, proscribed xiafaxin and apriso.


i know colitis issues is less common in the small bowel with a jpouch in place but less heard of to have colitis issues and be a victim of polyposis syndrome.


i posted under doughboyinphl78 about clear watery discharge and maybe now as pouchitis was just ruled out for me that colotis issues and frequenting the toilet can cause my wet butt streak issues.??


ive never had colitis diagnosed when i had a colon before colecttomy in 2001, but i guess anything is possible, especially when your guts are altered to some degree or other.


i was nervous about potential findings other than just having gone in and under for my usual, the fap surviellence, and when doc came back when i wa sin recovery this afternoon i asked "doc you dont have bad nws to tell us"..he said "no nothing bad"...when i was still groggy and under i was told upon awakening that i have microscopic colitis in the or still...


i think he prescribed it for a week or two, after that i hope it will be better because i dont want to gain weight, im already stocky at 245 lbs on a 5 feet 7 inch frame...and there is a list of some unpleasent side effects of apriso/mesalamine and xiafaxin.


i guess im just posting to share my news, maybe get some support, ive had my pouch since 2001 a one step procedure and this is the first time i cam eout of a scope with colitis of small bowel being a diagnosis for myself.


-len
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I have had some weird things go on with my BCIR (continent pouch) and there were times people threw the colitis word around in the ERs I would go to. My scopes (besides the normal cancerous polyps) never show anything at all actually. I have never had pouchitis but I get the symptoms. Cleveland Clinic said the only thing they could think of is SIBO (small bowel bacteria overgrowth).

I am moving to Philly next month fellow faper. Do you go to a good FAP GI there? I was going to continue my GI here for my annual scopes or sooner since I just had a possible cancer growth pop again in the duodenum.
hi vanessa,


nice to meet you - i have used to read the board alot as a guest without registering. ive been around here for years reading. thanks for the information you shared with me. i see dr paul berenbaum gastroentologist. he is very thorough and you will wait in his office an hour or more sometimes when it is busy or he is backed up/running late. he found my fathers colorectal cancer years ago, 23 years ago atleast.


i dont mind meeting up sometime with you once you have moved over to philly and settled in. maybe we can be real life fap buddies and share experiences. i was diagnosed at age 22 offically (first colo/gastro) and at 23 had the one step j-pouch formed and here i am. there used to be avid local support groups in philadelphia. i was operated by the once chief professor in temple hospital rolando rolandelli, and my initial op took 10 1/2 hours in 2001 and was done lapro. today you can get a jpouch hook up in 2 -3 hours im told and surgeons are trained to do it in that short time span.


as far as treatment/g i care i keep it local, and dont have the means/finances or sitation to travel. but berenbaum wants me to see someone at john hopkins regarding polyps in the pouch itself.

-len
I have a good GI here that specializes in bile duct so I go to him since that is my main issue now, the duodenum. I just grew my first stomach polyp! Talk about fun times.. not.

I am moving on Nov 30th and would love to meet up! I never met anyone with FAP in person. I think it is estimated 0.001% of the population has it so people I do meet are online and usually far. I have been to Hopkins but never to see a GI. The GI I have here at Georgetown is Dr. Al Kawas in case DC is an option for you to go to.

I go to Cleveland Clinic on occasion so perhaps when I go if you need a lift we can arrange something. I am not sure when I will go again though since I am in between jobs and the move will break the bank a bit.Dr Bo Shen is pretty good with pouches and issues like yours. But for our disease and polyps Dr. Church is the person that is excellent. At Hopkins the Geneticist I see is Guidierllo (I am spelling that wrong I am sure). Hopkins was the first hospital to diagnose FAP and has the largest grant for research as of last year. I can get his info for you but he is there to just educate about FAP and refer you out.

I will send you a PM here with my contact info.

I got diagnosed 2 years ago, I am 37 and the first to have FAP in my family and last! (no kids)
Sorry to hear you have cuffitis and Irritable Pouchitis Syndrome (IPS)Frowner I have them both, chronically, too. I started a thread on here, I think in the General section, about "IPS vs Pouchitis". In that thread I've posted 3 links to articles/studies about IPS, and other j-pouch problems, in different posts with in the thread. You might want to read the thread and look at the article links too. I'm under a treatment plan for IPS that includes an antibiotic but it's not the only treatment for it.

You have just been having these problems so maybe all you need is to treat this all one time. Unfortunately I have chronic problems. I am not on antibiotics all the time, just part of the time. You would probably benefit from knowing what IPS is as the causes are different that pouchitis and doesn't involve the inflammation that pouchitis does. Your doctor diagnosed the cuffitis/UC from what he must have seen, the redness on your cuff. The biopsies will give the proper diagnosis. Is the mesalamine a suppository? It should work well. The antibiotic is for the IPS. Did he take a stool sample to test you for c.diff? I think vanessavy will agree with me that your frequency and pain symptoms could be caused by that as well. You could have small bowel bacteria overgrowth, instead of IPS, which the antibiotic should take care of as well. So hopefully you will be feeling better soon!

I hope the cuff biopsies come back as a minor infection or whatever and not cuffitis. It would be just too cruel for you to have cuffitis and FAP too. IPS is similar to IBS and stress is a big cause for me.

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