I had my sigmoidoscopy done this morning on the J Pouch at Yale Digestive Diseases. The J Pouch looks worse than at any time in the last 17 years I have battled pouchitis. In particular, there are "deep punched out ulcerations (1-2 cm in size) in the distal pouch at the area of the anastamosis to the rectal cuff." It doesn't look good at all. I will try to post the report and pics below. I have everything saved on my computer in Adobe Acrobat but don't know how to convert it to a zip file for this board.

This message has been edited. Last edited by: CTBarrister,

Those sound like some pretty big ulcers, and I bet your mind is running to the possibility of a Crohn's diagnosis, which of course is a possibility. However, the good news is that suture line ulcers and inflammation are common, and should not be viewed as a sign of Crohn's, even if granulomas are found in that location. This does seem to point more toward chronic pouchitis. But, what troubles me, and I sure you also, is what comes next if this is antibiotic refractory chronic pouchitis. I wouls assume this means topical steroids or mesalamine, followed by oral steroids/mesalamine. Failing that, I think Immune modulaors, such as Imuran and biologics are next.

http://www.dept-med.pitt.edu/g...eadings/shen2005.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093723/

Jan

Is it a jpg? If not, try saving it as a jpg file.

kathy

It is PDF (Adobe), I tried compressing it as a zip file and I was able to do that, but then when I attempted to upload it, it was rejected as exceeding zip file maximum bandwith. It was not over by much. JPG format also was in excess of what was allowed. This means I will likely have to wait for the Doc to send the individual pics to me and I could then post the pics 1 by 1. What I attempted to upload was page 1 and then page 2 of the sigmoidoscopy report, which has the pics and shows those punched out ulcers. This is definitely looking worse than any prior ulcerations I have seen in the pouch. My concern is not Crohn's, but rectal cuff cancer. The inflammation looks worse, even though I don't particularly feel worse except the last week or 2.

This message has been edited. Last edited by: CTBarrister,

quote:

I wouls assume this means topical steroids or mesalamine, followed by oral steroids/mesalamine. Failing that, I think Immune modulaors, such as Imuran and biologics are next.

I tried Imuran at the end of my time with UC and my body rejected it or I should say my liver rejected it. Around 1991 or so.

I will post the pics next week when I get them. I just have the report with the pics and it is too big to upload even breaking it up into 2 pages. I have it in zip and JPG, it is just too big.

Have you tried Entocort? It was able to knock a lot of my pouchitis inflammation out. I only have a small amount of inflammation left at the anastomosis line like yours. My pouch went from total inflammation to just a little bit. I was shocked to see the latest scope.

Good luck!

I'm sorry--that's super crappy news. Are your doctors going to repeat the biopsies soon?

Oh sure, transitional zone cancer would be a big worry. Probably does not help to know that it is quite rare. Just having constant, simmering pouchitis for 17 years probably makes you worry enough without signs of increased inflammation now. Odds certainly on your side, but it does not make waiting for biopsy results any easier.

If it were me, I'd be asking about short term oral and/or topical steroids to get this into as much remission as you can get, then maybe rethink your maintenance treatment. Even though you were not very symptomatic, they need to treat the chronic inflammation that is significant. Otherwise, cancer/dysplasia could pop up without being able to see it.

Fingers crossed for you that this gets turned around quickly!

Jan

I think all options are on the table and if steroids need to be used we will have to do it.

The pics of those deep punched out ulcers in the distal pouch are concerning. The report also notes and pics show segmental inflammation in the neoterminal ileum, 4 cm long and 20 cm proximal to the pouch inlet. This is a bit larger than what was previously noted in prior studies. However the rest of the distal ileum is normal.

When I can get the pictures posted next week, you will see what I am talking about. The pouch is in much worse shape than it was in the last study in 2010.

Biopsy results due back next week as well.

This message has been edited. Last edited by: CTBarrister,

djb,

I am really sorry to hear about this. Have you had any symptoms lately that would relate to your pouch results?

Please post your pics and I will be praying for you to get good results with your biopsies.
I would try not to get too concerned about the cancer as much as I would with alternate treatments to control the inflammation.

I am not sure if your constant inflammation was in the distal pouch as mine is or not. Our GI did not go above my pouch at my scope time (which he indicated he was going to) and I was surprised. I am seeing him next week and will discuss this with him.

I'm so sorry. I am getting my pouch out on Monday but for the last month or so I did use Entocort and it felt like it was dimming down the inflammation.

quote:

I am really sorry to hear about this. Have you had any symptoms lately that would relate to your pouch results?

In the last 2 weeks or so I felt kind of lousy but those deep punched out ulcers in the distal pouch likely developed long before that. The distal pouch has always been an area where I had ulcerations but never before did I have ulcerations that looked like this.

Our GI scoped my neoterminal ileum and the inflammation there, as noted above, is much worse than what we previously saw, but most of the neoterminal ileum looks okay.

My symptoms and day to day life do not match the amount of inflammation I am seeing. Obviously, something is going to have to change in my regimen. Probably entocort but we have to clear those ulcerations up. If not leading to cancer they can maybe lead to perforation of the pouch. They are deep, punched out ulcers and I never had anything like that before.

Pics will be sent in a few days from what he told me. I have the pics already in the report but it is too big too upload either as a zip or as a JPG.

use an online photo host site like photobucket, then you can upload them there for free, then just post the image into a post for us all to see!

Subsky,

That is a great idea. I will see if I can do that tomorrow morning. All the pics are saved on my computer at work.

Can I upload them to photobucket and then post a link to that site here?

Yes, you can post a link either by just copy and pasting of the URL or using the URL button feature in the message window.

Jan