My GI doctor prescribed Canasa suppository for my pouchitis, 1G, twice per day. CVS pharmacy said the maximum dosage should be 1G per day or 500mg, twice per day. It took CVS serveral days to get my doctor to confirm the prescription.

I started the suppository since Feb 21, 07 night, it doesn't reduce my frequecy of bowel movements. Starting from Tuesday night, I have terrible itichness, I scratch, then I see rash and patches of swelling over my body. I believe that is medication side-effects.

This morning, I called my GI doctor's office, both the doctor and his nurse are not in today. Now I am schedueled to see a walk-in doctor at 3PM.

When my GI doctor scoped on Feb 16, 07, he said:" You have a J-pouch. Here is your cuff. You have cuffitis." I said:"I have a W-pouch. Rectal mucosectomy and strictureplasty have been done. Now I have incomplete evacuation problems, incontinence and mild stricture after rectal therapy and numerous digital dialtions." Then my GI doctor said:"Oh! Then you have pouchitis. How come I don't see your limb?"

My queries are:
1) I don't know how much an internal medicine docotr can help me. Should I re-schedule an earlier appointment with my GI doctor? My scheduled appointment is March 14, 07.
2) Do I still have a cuff after rectal mucosectomy?
3) If no, I can only have pouchitis. Has anybody been treated with Canasa suppository for pouchitis? If yes, does it help?
4) Based on my experience with this GI doctor, should I quit him? He is referred by my colorectal surgeon because of my complicated condition.

I have a very trying experience with my pouch, I really need your support and advices. Thanks.

If your outgoing limb of the W of your pouch is very short, I can see how it could be missed on scope. After a certain amount of time, all pouches stretch and basically are about the same size.

Even if you had a mucousectomy, it is possible to have cuffitis. All it takes is a tiny scrap of rectal columnar tissue to be left behind and it can regrow, causing symptoms virtually the same as pouchitis, but much more likely to bleed.

The standard dosing for proctitis with mesalamine used to be 500mg twice a day. Those were discontinued and replaced with 1Gm suppositories daily, which were found to be just as effective. I am presuming that you either have cuffitis or pouchitis that is confined to an area that is immediate to your anal anastomosis.

Since you have developed a rash with the mesalamine, you should stop them. Perhaps you could tolerate the lower dose of 1Gm a day, but better to hold off, especially since you did not see any improvement. For pouchitis, the standard treatment is antibiotics, either Flagyl or Cipro for 10-14 days. 5-ASA drugs have been used for pouchitis, generally chronic forms, with variable success.

It sounds like you also have issues regarding anal strictures and this may be the real root of your problems. You may get better results with hydrocortisone suppositories and using a home dilator tool after a dilation by your surgeon. The stricture may very well be preventing you from completely emptying and thus predisposing you to pouchitis from fecal stasis.

If you have lost confidence in your GI, there is no reason to stay with him. I think that once you reach that point it is hard to continue with the same practitioner. However, I am not sure that you can conclude he is not competent based on what you describe.

Jan

Jan, thank you so much for your early reply. Please find below is my update.

On Mar 2, walk-in doctor told me to stop Canasa suppository and re-schedule an earlier GI doctor appointment.

My allergy reaction only happened during my bedtime and stopped after a few hours.
On March 5, I consulted my family doctor who put me on antihistamine for a week to stop my allergy reaction. It helped except one night. I have been off antihistamine for two days, so far no allergy reaction. God bless me.

My GI doctor agreed to stop the Canasa suppository as it didn’t improve my bowel frequency. The findings of my pouch biopsies are “small bowel epithelium with acute and chronic inflammation, architectural distortion, ulceration and abscess formation, no malignancy identified”.

My GI doctor wants me to try VSL#3 for my pouchitis, 6 mg once a day.

Regarding my mild stricture in the pouch outlet region, GI doctor said it is not a major issue as he can pass his index finger into the pouch. My colorectal surgeon didn’t allow me to use the dilator for the stricture. He rather performed the digital dilations in the clinic and requested me to do home digital dilations. I have not seen my surgeon since Oct 06. I am still doing home dilation with my slender finger once a week.

I agree with you that the shape of the pouch is changed after years of stretching. However, when Dr. Fazio scoped my pouch in Nov 05, he told me that I have no rectal cuff and was able to identify the limb.

For pouchitis, GI doctor prescribed me Levaquin for 2 weeks, 500mg, twice a day. For the last week, gas and urgency were reduced, no seepage and overnight incontinence if I didn’t have soup after dinner. Not much help to my bowel frequency, still about 10 BM per day.

Based on my previous experience, pouchitis comes back soon after stopping antibiotics.

Now my questions are:
1)Should I try VSL#3 for my pouchitis? VSL#3 is so expensive.
I have been taking PB-8 since Aug 06, but I still have pouchitis, so I guess that I have switch to another probiotics.

2)What is architectural distortion mentioned on my pathology report? I didn’t get a chance to ask my GI doctor because he was in a hurry.

3)Seeing that my mild stricture is so persistent, what would you like to suggest?

Jan, I look forward to getting your reply. Thanks again.

There are many here who swear by VSL#3, but I have yet to hear of anyone having any real luck with it for treating active pouchitis. Controlled studies have not found it to be useful for treating pouchitis, only for maintaining remission, once remission has been acheived by other methods. So, it makes sense to get the pouchitis under good control with the antibiotic (and this may take several weeks or months, considering the amount of inflammation described). Then, once you are finished with the antibiotics, use the VSL#3 immediately. If expense is a major issue for you, I would suggest you try Culturelle or Flora-Q, both of which have shown some efficacy with UC and Chron's maintenance. My feeling is that probiotic effectiveness is as individual as antibiotic effectiveness. Personally, I would not stay on a probiotic for more than 3 months if it did not do what I needed it to do--namely sustain a remission of pouchitis. This does not mean that you won't have periodic flares that need antibiotics. And...for some people, nothing is terribly effective and chronic pouchitis becomes a real problem. If your pouchitis responds to antibiotics, but keeps recurring, you may have to just stay on antibiotics long term. In that case, you take the lowest dose that keeps you in remission.

The architectural distortion probably relates to changes to the villi that typically occur during adaptation. This means that your small bowel mucosa is changing to become more like colon mucosa.

Home digital dilation should be fine as long as it is adequate, and it seems that it is.

Jan