Thickening of pouch entrance

Not sure I am following you on this. Is your scar tissue at the anastomosis conndction or at the top if your pouch ? I suffer fri fussures due to chronic pouchitis/ cuffitis and repeat inflammation. And scar tissue at the exit. ( anastomosis) of the pouch. Yes, fussures ate hard to heal. I gave been dealing with them on and off for over six months. I use nifedipine and rectiv to help but even when they heal, it isn't long before they tend to open up again and they are very painful. Were you having pouchitis symptoms? Where is the pouchitis located and ate you straining to empty?

Thanks your your post. The thickening is at the top of the pouch. The doctor had trouble getting the scope through the pouch to see the intestine above. There was a lot of inflammation near the top. Currently I'm straining but I'm on cipro which tends to thicken the stool too much. I'm hoping it's just swollen from the inflammation. A week prior to the scope I had burning bowel movements but was starting to heal. I only had a frequency of 5 times per day and was shocked to see how bad the inflammation was especially without me knowing. I'm just terrified I will have to lose the pouch.

I'm not sure I would get too worried. I have burning a lot w the pouch and ulcers at the bottom of the pouch and have hasn'them for awhile. I too experience trouble emptying w straining and have been survivibg like this for a long time. Certainly not an optimal situation. I go to the bathroom 2/3 times during the night alone.
Has your GI made any mention of your losing the pouch ? Did they find inflammation in other areas of it?
Cipro does thicken the stool. I'm a bit confused though as usually the straining is from trying to empty the pouch with a stricture or inflammation at the exit.

Did the doctor feel the pouchitis was brewing for awhile? Be careful w the straining. I suffer w horrible fissures due to my stricture at the anastomosis. It is what causes my pouchitis and cuffitis and all the issues I deal with. The fissures can be very painful and take a long time to heal in some cases.

The doctor said little and did not say I would loose the pouch. He is concerned that since I've had chronic pouchitis it may be chrons. I honestly did not want to see more of the exam so I only seen the inflammation of the upper pouch. He did not mention any inflammation at the base. He is going to scope again in January to see if the thickening at the entrance to pouch was just swelling or if it's scar tissue. I think all the inflammation I get in the pouch is related to the acid attacks I get in my stomach which has just recently been treated effectively. Have you heard of thickening at the entrance? Thanks

I think I have the same issue. My doctor is not very helpful either, so I have become my own doctor. Just had a dialation due to scartissue ... again, and was told again, that I have some sort of minor flare / undefined infection. The interesting thing is that I have done an experiment. Before my previous dialation 5 months ago I quit all sugar for a few weeks. We are also speaking about fruitsugar, and guess what. That was the only time my doctor did not se any sort of flare / infection. So now I have to try again. Have any of you guys feelt a connection? I am thinking that there could perhaps also be a connectin between thar and swelling or growth of the scartissue, but of course I am just guessing here. Let me know what you think.
Take care
Rikke

I have a narrowing at the J Pouch inlet due to inflammation. They should look at it with an MRI Enterography or CT Enterography. I had both studies done and they showed thickening of the bowel wall and inflammation in my neoterminal ileum, also seen on scopes. Crohn's was initially suspected but my doctor believes that what is causing the irregular swath of inflammation above the pouch in the ileum is "backwash stool" due to the narrowing of the J Pouch inlet. To remedy this situation which became very bad in summer 2012, I was put on Entocort and changed my diet and improvement was seen on the next scope.

You sound like a very good candidate for an MRI Enterography- that test would give them a much better handle on what you are dealing with than a scope.

Thanks for your response. How is a dilation done and what did the recovery involve? Did you have any fissures and could you feel it? My doctor thought the thickening was due to chronic inflammation which I feel is more to do with too much acid from my stomach entering the pounch and damaging tissues. I have also had issues with sugar and I tried honey for a while but that did not help. Did any natural sugars work?

Hi CTbarrister. I will ask for the MRI Enterography and see what they find. Did your doctors try to suggest you had chrons? I have no symptoms of chrons other than pouch inflammation. What diet changes did you make? I try to stay off high fats, artificial foods, onion, garlic and tomatoes. thanks!

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Did your doctors try to suggest you had chrons? I have no symptoms of chrons other than pouch inflammation. What diet changes did you make? I try to stay off high fats, artificial foods, onion, garlic and tomatoes. thanks!

Both of my GI specialists, in NYC and in CT, said Crohn's could be suspected but eventually they rejected it for several reasons. The Prometheus test, though inconclusive, came back negative for both Crohn's AND UC! More significantly, the pattern of inflammation in my ileum was never seen for the 1st 16 years after I got my J Pouch, and when it showed up, it was simultaneous with discovering that my J Pouch inlet was narrowed due to inflammation. The conclusion was "backwash stool", and SIBO that was created in the area above the J Pouch inlet due to backwash stool.

I changed my diet to eliminate sugar, carbs and other foods that feed SIBO. Basically there are a large number of IBD diets out there and they vary somewhat in the details, but the basic principles of all IBD diets, whether Paleo, SCD, FODMAP or the UMass are drastic reductions in sugars and carbs and in some cases gluten. Garlic and onions and tomatoes are not recommended on the diet I am on.

I should note that in the 2 year period prior to my scope in 2012 I had been recruited to join a Dinner Club and my eating habits were terrible. I did not get scoped for 2 years from 2010 to 2012, and the summer of 2012 scope revealed a dramatic worsening since 2010. Prior to 2010 my annual scopes of the J Pouch since 1992 basically showed the same thing consistently in the J pouch. The interior of the J Pouch and the narrowing of the Pouch inlet dramatically worsened in that 2 year span 2010-2012, and I kind of knew part of it was my own fault.

I went from high sugar and high carb to very low (basic Paleo diet), and that made a difference, and Entocort made a difference.

The MRI Enterography will give your Doctors a much better framework from which to determine whether you might have Crohn's. My results tended to rule it out because they look for a certain pattern of the bowel wall being thickened. Inflammation that does not show up on a scope will show on the MRI because the bowel wall is thickened in those areas. Hence they can ascertain a pattern or swath of inflammation and determine if it is similar to Crohn's or not. Mine, according to my GI specialist, is not really Crohn's-like pattern of inflammation as it is in irregular patches right above the inlet. They felt that was evidence of inflammation due to SIBO, not due to Crohn's. So the MRI Enterography is an important diagnostic tool in a situation like yours and mine.

Good luck!

Hi thanks I think the MRI would be very helpful to get the correct diagnosis. Do you consume a sugar substitute such as stevia? Thanks so much

I think Stevia may be a Canadian thing. I do consume a sugar substitute called Splenda in my coffee, but mostly I drink beverages that have no added sugar. I drink an antioxidant drink called Bai5 which has natural sweeteners and 5 calories a bottle so there is no real sugar in it. I have small servings of fruit every day like fresh pineapple, which has some natural sugars in it. The key is lowering, not necessarily completely eliminating, sugar consumption. If you have a SIBO issue that is behind the inflammation, then lowering sugar and carb intakes should help. However the available studies show that dietary changes to address SIBO can take up to a year before results are seen. Even if it is Crohn's, I can't imagine that a diet high in sugar and carbs is actually helping the situation, and it certainly isn't going to help your general health.

Actually, stevia is common, at least on the west coast. All our supermarkets carry it, along with sucralose and nutrasweet.

Jan

You can get Stevia anywhere anymore.

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Thanks for your response. How is a dilation done and what did the recovery involve?

Hi there,

Please excuse my bad English - I'll try and explain...

A dialation is done via a sigmoidoscope that have a ballon attached, so that when doctor finds the narrow place, she blows air in the ballon, so that it forces the scartissue to stretch or let go.
In the beginning I did not get sedated but it was just to painful for me, so now I do get almost full sedation every time. I go home the same day, and is able to work a bit the day after - just feeling tired from the whole ordeal.
It helps me, but sometimes it can also cause more trouble, because it can actually result in more swelling, but it will wear off. It is, what the Danish doctors call a 'mild procedure' with low risk. But there are of course a risk every time they put something inside of you. So I only get it done, if I really have no other option.