biopsy results just received.....

This is similar to my recent report but my inflammation is in the cuff and distal pouch only. I actually have ulcers there and I am currently weaning off entocort. Are you having active symptoms? My report did not say active enteritis this time as they used a different term eciphinols in the tissue. When's report came back w enteritis there was inflammation noted but not ulceration as there is now.
In my case I am leaning toward pouch advancement surgery as my cuffitis has been chronic even with meds and very debilitating lately. My surgeon believes this will help me better empty my pouch also and hopefully help w the lower pouchitis.

Simnilar to my results as well (chronic active enteritis). In addition, mine also indicate ulceration and granulation tissue, w/fragments of squamous mucosa with acute inflammation and reactive change. My CRS (also Cleveland Clinic) added a note: "The biopsies are not alarming, some inflammation, but went along with what I saw when I looked in your pouch."

I've had results similar to this forEVER. None of my docs seem to worry about them, maybe because my symptoms are very minimal at this point. I do take anucort every other day right now, and switch to canasa once in a while, but will probably be taking suppositories as long as I have the pouch.

I'm very interested to hear what Dr. Shen says in response to your request.

How long have you been taking anucort as I stay away from it as my surgeon and GI do not like it for long term use where Dr. Shen has told me you can take it forever (but most likely with breaks in between I am assuming). My surgeon was never alarmed about my inflammatory results also, but this last scope came back different so I was confused (terminology was different). In my case, the anal pain from the cuffitis can be
pretty bad and I h ave a stricture at the anastomosis which further complicates things and I have been taking canasa forever. I have never taken anocort for an extended period of time, and wonder if it is worth trying this versus moving directly forward for advancement surgery which I am very leary about (and have been). Has Dr. Shen ever indicated a concern for tissue thinning using anucort and if not, when you talk to him, maybe you can mention this to get his reaction? I am very interested in his response.

Jeane, Dr. Hull, my CC CR Surgeon, is the one who told me to go ahead and use the anucort. I mentioned my concerns about thinning of tissues to her, and she let out a hearty laugh and said "that is the LAST thing you should worry about". Didn't exactly make me feel better, but I've learned not to worry much anymore about these sorts of things.

As background, I told her my hair was falling out when using Canasa long term, and she said if your hair is falling out, quit using it and use the anucort. When I asked which is better for cuffitis - anucort or cuffitis? She said 6 of one, half a dozen of the other. Just to emphasize, she is a surgeon, not a GI doc.

BTW, when I was seeing Shen, he had me on both canasa and anucort - 1 canasa/day, 2 anucorts/day - fun times. The anucort was to thicken things which was a goal for minimizing discharge through the RV fistula which originates in my ATZ, and to help with the cuffitis which apparently was severe_looking on scope/biopsy.

Right now, I am doing quite well on the anucort - I used it for about 2 weeks daily, and am down to every other day. By "doing well", I mean no real nasty cuffitis symptoms as you are experiencing, and about 5-6 BMs/day on my good days. As I noted, I still show ulcerations, etc. on biopsy. No one ever explains these ulcerations, but as long as I'm not having symptoms - outside of the fistula - I'm just going along with the program that's been working.

Ween, remember that the pathology results are mostly microscopic. They are looking for serious stuff like dysplasia, granulomas, and pyloric gland metaplasia for the most part. EVERY pouch has chronic inflammation, so findings should be taken in conjunction with the visual findings at the time of the scope. This is just how it is when you use ileal tissue for a reservoir. I have been getting reports like these since 1996 and the only thing that changes is the degree of inflammation, depending on what is going on at the time.

What is NOT found is probably more important here than what was reported. The biopsies are primarily to rule out serious complications.

Please wait for a response from your doc before you freak out.

Jan

This is interesting as I have lost a TON of hair since being on Canasa for over 16 months pretty much chronically. It is reslly depressing me. I think I may try the anucort as you have. Do you do one in the sm and one in the pm? I am not sure how comfortable I would be with your surgeon's comment but maybe my guy is just more conservative. If the treatment is working I would go with it. How long do you anticipate to be on the anucort? Thanks for sharing.

Jan,
Is inflammation noted on biopsy the same as ulceration seen visually? I always thought the ulceration is obviously more severe and you can have ileal pouch inflammation without ulceration. Seems in the past for me no comments were made on visual ulceration seen unless when pouchitis was noted in prior written report ( not oath report) this is synonymous with visual ulceration seen on scope.

No, not the same, but there will be inflammation on biopsy when there is ulceration, and if the biopsy is taken at the ulcer site, here may be a notation of ulceration.

What I was trying to stress was that biopsy reports (pathology reports) are not the same as the endoscopy report. You need to use the scope report to make the clinical correlation.

Jan

Thanks Jan for helping clarify this. Wish it made me feel better about my recent scope and biopsy report.

Great, I use Canasa daily for chronic cuffitis and my hair continues to fall out. I never had problems like this taking meslamine orally. I have Anucort but it is for when my cuffitis flares and I need to use them both.

My lab reports describe the ulcers in my cuff as well as saying I have chronic cuffitis. I've noticed that different pathologists report things differently. I had 2 scopes several months apart at different facilities and nothing had changed but the wording was different.

I too was told there is some inflammation in everyone's pouch that doesn't mean there is something wrong.

Jeane, I take 1 anucort every other day. I'm planning to switch to canasa for a week or 2 and then resuming anucort. I'm kind of on my own with this schedule, as in my surgeon, in so many words, told me to do whatever works for me.

Re. the hair loss, my concern is that if canasa is making my hair fall out, what else is it doing?? However, the hair loss stops after about 1 week after quitting the canasa, and if I take it for short periods, 1-2 weeks, there seems to be less/no hair loss issues. Just my observations.

That's pretty much where I am with this also. Self medication. I am trying anucort today also and trying very hard to clear out the anal canal and hopefully lower level pouch with a squirt bottle and water. I really need to order a bidget. My GI says Canasa is the most benign of the meds and never expressed concern with long term use. The hair loss is horrible though. Have you discussed advancement surgery? I'm really considering it as my life like this has not been fun. I'm trying to get through the summer if possible and scheduling for fall after both my kids are settled in college.

You need to get a bidet jeanne. My husband wired an outlet from our 2nd floor master, down through the dining room wall to the basement. He ordered me one from Coco on sale and I don't know why I waited so long to get one! It is worth every penny and I was using a sprayer attached to the toilet before! It is good for cleaning out the cuff area and getting the pouch to completely empty. It has cut down on the number of loo trips for me. The cost was less than $350 delivered and it has a dryer.

I'm in control of how I'm treating myself too. My GI at Mayo has given me multiple refills on my Augmentin, Canasa and Anucort. I am treating myself for c.diff currently as I was not responding to Augmentin. It was too late to get a stool test done to make sure I had it. I ordered a refill on Flagyl and he approved it.

The local GI office's doctor on call gave me a hard time a few years ago. I called in and asked for a prescription for Flagyl. I was out of town and knew c.diff was back. He gave me a hard time but finally called it in.

It is nice to have a doctor that realizes we know what is going on, it is an antibiotic for heavens sake. We don't want to take them to begin with, grr.

Te Marie,
Can you post the name and style of your budget and where purchased. I'm doing that this week. Are you able to get up into the cuff area with it? I noticed after taking more time ( like multiple refills w squirt bottle) I have been in the bathroom less today also. I need to do something to try and heal the ulcers in the lower level pouch which are probably from fecal stasis as my GI and surgeon have indicated.

jeane,

My husband researched them and ordered it and then told me! He's a retired metallurgical engineer and he compared different brands. It's a Coco elongated with side control, versus remote that costs hundreds more. He ordered it directly from the company and it was on sale for $329 delivereed, model 9500R.

http://www.biolifetechnologies...qfrb4CFbRxMgodiyUABA

Here's the link and it's still on sale!

He had no problem installing it. The problem was wiring the outlet from our 2nd story master bathroom through the dining room wall down to the basement electric box, lol. He did that too. So you will need an electrical outlet. That is why we waited so long to get one. I had a hand held sprayer up until this. It was fine but nothing compared to the bidet.

It has a turbo feature that does allow for you to direct water more enema like and you can adjust the water pressure;

It says the offer ends 5/16 at 11:00 PST but he bought mine the beginning of April when the sale had ended on March 28th for $329

Remember to get a round or elongated seat

Te Marie, Thank you so much!! Hope this may help others in the post as well. I'm going to research it today.

Dr. Shen did reply and said "would not be much concerned" about my results. He is suggesting Canasa.

I am getting surgery in a few days. Is there any connection to these issues and how low in the rectum The uc was before surgery, or how much cuff was left remaining?

Allswell,
Ask Jan for sure but most of us have UC in our rectums. It didn't make sense to me that a double stapled procedure was performed on me after I had my surgery as I'd had UC in my rectum since I'd been diagnosed. I think you have a great question. I didn't realize there were 2 different methods to attach the j-pouch to our rectal cuff, hand sewn with muscosectomy and the double stapled procedure. I probably would have gone along with my surgeon's choice and picked the double stapled one that I received due to the potential incontinence problems. In hind sight I needed the hand sewn procedure due to my chronic cuffitis. We can not predict the future.