Hello I had jpouch in 97. several cases of pouchitis, cipro and flagyl helped. over the last year i had severe abd cramping and fatique. mu belly button started to get bigger and i was told i had a umbillical hernia. went to surgery and turns out that it was a sebacous cyst. Now I am concerned. My stomach would hurt when I would lift my patients and then I would have really bad cramps.
I would really like some information. When I had my surgery it was a one step in sf at ucsf.What kind of check ups do I need? I was not told about any.
Thank you,
Lori

Hmmm... never told to have check-ups? Seems odd.

If you were perfectly fine all these years, I'd say the occasional look with a scope would be adequate. But, since you have had a number of cases of pouchitis and now have problems with abdominal pain, I think you need some follow up with a GI. Generally, IBD does not cause symptoms relative to things like lifting, and this sounds more muscular and/or possibly hernia related.

If you still retain your rectal cuff, this is another reason to have periodic scopes with biopsies, as it is possible to develop dysplasia and cancer, although it is rare. Some people are told that they must be scoped annually, but there really is no consensus about this. Just some sort of follow up is prudent.

Jan

Hello Jan,
I appreciate you answering my note. I see you live in Fremont. I live in Modesto, ca. about 1 hours from you. i went to see the surgeon about three years ago and he has since retired. I have an appointment with my Gi doctor this month. What kind of scope is it, is it something I have to go back to the surgeon for?. Who is your surgeon is he in Ca?

I have Kaiser and had my surgery at the Kaiser Hayward Hospital in 1995. However, I do all of my follow up with my GI, here in Fremont. The scope is basically a flexible sigmoidoscopy. Some people follow up with their surgeons, but it really is not a necessity. My GI does just fine. If your GI has never scoped an ileal pouch before, you may want him to get some tips from someone who has (just so you aren't being a guinea pig). Basically it is the same as a regular sigmo, but the pouch does not stretch as much as the rectum, so there is a limit to how much air they can put in. But, any experienced GI has done upper endoscopies and knows how to deal with small bowel. The main thing that is easy to miss is the rectal cuff, right inside, past the anus. He should do a digital exam first, to feel for "bumpy" tissue, a sign of inflammation. Then on scoping, he should biopsy the cuff and any areas in the pouch that seem abnormal.

Jan

Jan,
I remember I did have a scope done several years ago and they did a biopsy and thats when they told me I had colitus in the small amout of tissue I have left. I thought I had a unbillical hernia, surgeon went in to find out it was an sebacious cyst, he removed it. It seems when I eat low residual foods I am fine. I still have 10-15 bm's a day. I am no longer anemic anymore which is the 1st time in about 15 years. What kind of meds do you take daily.
I am an R.N and love my job but the last 8 months it has been difficult feeling a 100%.
Thanks,
Lori

Lori, Based on what you tell me, you have cuffitis. This is one of the more common complications. The basic treatment for that is mesalamine (Canasa) or hydrocortisone suppositories.

I have chronic cuffitis and intially treated with mesalamine suppositories, then after a few months switched to Azulfidine for oral maintenance. I only rarely use the suppositories now. I also have enteropathic arthritis and take Humira for that.

I am an RN also, but stopped hospital nursing when my second son was born 20 years ago. I now do paralegal work part time, summarizing medical records.

Jan

Jan,
you are probably getting tired of all my questions. What are the s/sx of cuffitis and is it common in people with jpouch
Thanks,
Lori

Cuffitis is second only to pouchitis. The symptoms are essentially the same as pouchitis, but there is bleeding. If you have bleeding, it is nearly always cuffitis, not pouchitis. So, if you have diarrhea, urgency, a sensation of incomplete emptying, and bleeding, the likely diagnosis is cuffitis.

Here is a link to a very good, comprehensive article on diseases of the j-pouch that you will find to be a useful resource:
http://usagiedu.com/articles/pouch06/pouch06.pdf

Jan

Jan,
Good Day to you. Thank you for the web site, it was very informative.
Thank you,
Lori

Hello Jan,
I am really sorry to keep bugging you. As you know I had a cyst removed from my belly button. They thought it was a hernia and thought that was why I was is so much pain. I at home recovering for a about 10 more days and all I can think about is why I am in so much pain. I have always had 10-15 bm's a day. I take lomotil prn and pain is sometimes relieved with tylenol and if that does work lortab. I have an appointment with my GI doctor the 23rd, for a check up. The pain I am having is across my abd and the pain does increase when my pouch needs to be emptied. No rectal bleeding. Do you have any idea's? can you give me any advice? I will speak to my doctor about a pouch scope on that day
Thank you,
Lori

Could be any number of things, but the top things that come to mind are adhesion related issues, pouchitis, IPS (irritable pouch syndrome), or even Crohn's of the pouch. Impossible to determine without a good evaluation by your GI, including a scope. Adhesions would not necessarily be apparent on any diagnostic studies. Usually, they cause obstructive symptoms, but sometimes it is just pain.

Another thought is possible endometriosis.

Jan

Jan,
It's funny you mention that. About 15 years ago I had been diagnosed with endometrosis and ovarian cyst. 4 laproscopies later I was clear, I realize it can come back that is another is to consider.I think one of my fears is that someone will accidentally puncture my pouch when they are doing any procedures. I also need to get my annual check next month.
Thank you,
Lori