I finally have received the photographs from my J Pouch scope which was done on July 23, 2010, at the Yale Digestive Disease Center in New Haven, CT. The photographs you are about to see show the same mild pouchitis that has existed in my J pouch for the last 15 years - kept in a "simmering" state by taking rotating antibiotics. I went over these photos with my new J Pouch expert this morning and he advised that there is absolutely no change from my previous study in May 2008, which was essentially unchanged from studies going back to 1995, with the exception of a small ulcerated area 30 cm above the pouch. You cannot see that area in the photo marked "neoterminal ileum" because it is so small.

The first pic is the ileoanal, note the inflammation, mild, lower left

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ileoanal_2.jpg (133 KB, 218 downloads)

Top of Pouch

Top_of_the_Pouch_2.jpg (163 KB, 159 downloads)

Pouch inlet - note discolored areas on bottom

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Pouch_inlet_1.jpg (132 KB, 137 downloads) Pouch inlet

Pouch Outlet - note the discolored areas

pouch_outlet.jpg (125 KB, 110 downloads) Pouch Outlet

Another view of the ileoanal

ileoanal_1.jpg (116 KB, 105 downloads) Ileoanal

Neoterminal ileum - you can't really see the small ulcer

Neo-terminal_ileum.jpg (132 KB, 90 downloads) Neoterminal ileum

Pouch inlet #2

Pouch_inlet_2.jpg (143 KB, 70 downloads) Pouch inlet #2

Top of the Pouch #1 - inflamed area on top

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Top_of_the_Pouch_1.jpg (158 KB, 103 downloads) Top of Pouch #1

I'm so not hungry for my pizza now! :-)

Thanks for posting. It's interesting to see what other people's pouches look like with mild pouchitis. They didn't give me pictures to take home like they used to with my colonoscopies. I was kind of bummed.

clz81,

I posted these pics because there are a few other people here (notably Goldie/Debbie) who have indicated they have chronic pouchitis similar to my own, and I was hoping we would start a tradition of posting the pics so we can compare the patterns and degree of inflammation.

I have always gotten color pics of my J Pouch scopes, but this is the first year I asked that they be emailed to me. I would like to thank Yale Digestive Diseases for cooperating in this request.

I think everyone with chronic pouchitis should keep their own historical pictorial record of their pouchitis. By doing this, I was able to get an opinion that my pouchitis was completely unchanged from the prior study. How would your doctor know this unless he had pictures to compare one study to the last?

Finally, I should mention that all of the inflammed areas were biopsied and all biopsies came back negative. My Cleveland Clinic trained J Pouch expert tells me pouch cancers are very rare. He told me he only saw one pouch cancer at the Cleveland Clinic in thousands of cases, which developed in a man with severe chronic pouchitis.

I think I'll be joining your group. After being on antibiotics for about 2 months now, I was working on weaning off them to see if the pouchitis was gone. I did great on only 1 Cipro tablet a day, but now I'm taking 1/2 tablet a day. Symptoms started coming back with the first decreased dose. I'm going to stick it out a few more days and keep up with my probiotics and see what happens since it's tolerable right now. But I think I'm going to have to accept that for now at least, I've got a chronic condition. Maybe like some, after months of treatment, it goes away and never comes back!

I am the same way when I reduce dosages. My pouch specialist asked me to try to reduce dosages, but I know all the dosages of all the antibiotics which work, and below which they will not work. So it really is an exercise in futility, for me, to reduce rather than rotate. I am at this for 15 years now so I have an idea of what works well and what does not.

Doctors generally do not want their patients on antibiotics because of the possible side effects, but in my case I have been taking them for 15 years, continuously and in rotation, with no major side effects other than a very nasty cipro/flagyl induced yeast infection earlier this year. I had a recent blood test done which showed that one of my liver enzymes was slightly abnormal, but my pouch expert seemed unconcerned by it and merely ordered a recheck in 3 months.

The bottom line is that antibiotics, for me, have worked to keep the pouchitis at the very manageable level shown in these pictures with symptoms that are very negligible and do not impact my daily life.

All things considered...at least the antibiotics work for you for a very extended period of time and as you said your symptoms are very negligible and do not impact your daily life. Not ideal, but at least you're living life well.

Thanks for sharing the pictures...I can't get the images of the ulcers throughout my entire pouch that I'm not sure I'd like to look at them again anytime soon. But, good suggestion about getting the pictures...can combine them with the numerous and I mean numerous pages of blood work reports!

speech path,

Although you and some others may not enjoy looking at your own pouch pictures or mine, if those pictures are posted with a brief history of your condition and the treatment of it, it could be beneficial information for others who perhaps have the same history and/or the same pattern of inflammation.

If you noticed, in my pics the pattern of inflammation is at the top and the bottom of the pouch, and that has been the case for many years now. My doctor seems to think that one reason for that is the manner in which the pouch is emptying and the pressure being exerted in certain areas where the stool is being passed along.

Everyone here should remember that pictures are information, and information is a weapon. The more information you have, the better equipped you are to treat your condition. Posters here should not be discouraged from posting pics because it will make someone "lose their appetite", or because the pictures are "tough to look at." This is exactly the same attitude manifested by people that do not have IBD towards people that do. It is exactly the reason why we have been been kept in the dark ages for a long time in treating this disease. Please do not reinforce, with such comments, some of the same attitudes that are responsible for the treatment of YOUR IBD not being where it needs to be in the evolution of modern medical science and technology. I have seen some recent posts about this in other threads, as far as IBD being low on the priority scale of modern medicine, and one reason why is the archaic societal attitudes about IBD which some here seem to be doing their best to reinforce.

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Thank you for posting these pictures. You are right...knowledge is power. I liked being able to see what is meant by having "simmering pouchitis." I watch when being scoped but have never thought to ask for the pictures.
Rose