I'm kind of mad. I went to Mayo to do some things for my clinical trials and had my pouch scope done while I was there and an annual consult with my GI there. This was in December 2006. My consult was done after the visual report from the scope was finished, but the pathology results were not in. They said that there was some mild inflammation, but otherwise the pouch looked good and they would call if the pathology showed anything. In fact, I was anxious to hear the pathology just to hear for myself that there was no dysplasia. So, a few days after being home I got the call that there was no dysplasia and "we'll see you when you return next year."

In the meantime, I decided that I would start getting my followup care locally with my long time GI who is capable of this. I'll only return to Mayo when I need to for clinical trials. Well, as I was at my consult with him this past week, he asked me "how are you coping with your pouchitis?" Naturally, I said "what are you talking about, Doc?" I even told him that he had me confused with someone else. Well, to make a long story short, the pathology report from Mayo said that there was moderate pouchitis. I am still a bit confused about all of this, but definately upset that noone from Mayo bothered to mention this to me and I didn't find out until my local GI read through the reports before our consult!!! That is almost 11 months later.

Wouldn't you be upset? Here I have been battling these nighttime frequency issues and now I have a reason for it. Odd that there doesn't seem to be any blood - but then again I am color blind and it is hard for me to determine that sometimes.

I'm going to place a call to my providers at Mayo and let them know about this. I was very impressed with their care, and I will still followup with them, but this really should have been brought to my attention by them.

Just venting a bit.... I guess I should not have settled for my pouch behaving the way it was and assumed that it was just the way that things were supposed to be.

Rick

Aww Rick, well, I hope you start to feel better! That is awful. Sometimes things squeeze thru the cracks and it's really a shame when it happens. Just makes you shake your head and wonder where their's is... if you know what I mean.
If it makes you feel any better, my GI told me about a week ago that I didn't need to be taking 6MP any longer since I'm using Humira...which I've been on now for 5 months.......

Rick, I would be upset too, because if pouchitis isn't treated, it's not going to get better. Usually you don't bleed with pouchitis, most of the time bleeding indicates cuffitis. I guess the good news is that after some antibiotics, your pouch should start behaving again. I'm glad that your GI found it, and hope you start to feel better soon,

janna

My understanding is that it is typical for all pouches to show some level of inflammation on the path reports. The thing is that the level of inflammation is what is important and the fact that it was moderate and not minimal or mild. Plus, the fact that you were having chronic symptoms would be what they call clinical correlation. If you were perfectly fine, it would be a non-issue I guess.

The presence or absence of blood certainly is not a yardstick for pouchitis and is not considered a common symptom.

So, bottom line, I'd be annoyed too...

Jan

You know me .. Mr positive...maybe now they can treat this and ur ISSUES may lesson or go away.. It does suck bad rick and not fair, but lets hope it can get resolved and u start getting some much deserved good health!

What exactly is a pathology report and how often should they do one?

Hi Rick,

Only just seen this post. Have they given you anything for the pouchitis? I really do hope that things get better for you soon.

Hope you're feeling better by now. Keep us posted.

Take care.

Shell

Yup, I'd be annoyed too. At lest this is an avenue for you to get better. 'Better late than never' you know?

Absolutely, do tell them at Mayo because how many other people have had this happen to them and they don't know yet? There could be a number of pouchers out there suffering and you mght be able to help them by notifying Mayo that they messed up a little.

I hope that things improve when your doctor treats the pouchitis.

Take care,

Suzanne

Colorado,

A pathology report is the written report from the pathologist who examines tissues for infection, inflammation, dysplasia, or other abnormalities. In the case of pouchoscopy, it would be in the form of biopsies. In pouches created in the presence of IBD biopsies should be performed at each pouchoscopy when there are any suspicious areas noted. On a perfectly perfect pouch, biopsies don't need to be done with the exception of the rectal cuff every few years when there is rectal mucosa present. For those with FAP, the scoping/biopsy schedule is individual, but more frequent than for IBD.

Jan

Sorry to hear about this...did you ask Larson say about it? What GI do you see there? I can't remember who I saw the last time I was there. His Jr associate, was very impressive! This guy walked in and repeated back to me, my last 20 years of medical history, without ever opening my file. I was amazed. He must have a photographic memory.

Thanks for letting me know you were in town...you just don't want to have coffee with me do you??? (Thats my crying face.)