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Weird question. I have a stricture right at top of pouch (sorry, have posted about this once already), and they would like to operate to remove it (yes yes complications because so close to jpouch, makes me not want to do surgery, am afraid of going back to bag, am pooping and all that quite well, so scared of surgery making everything worse as has sometimes done in past and more scar tissue etc...). They say there is a fistula that is basically allowing everything to pass through/ around and not go through the stricture (size of pin hole apparently when scoped). 

My question is sort of weird, and perhaps ill-informed; can a fistula ever be a good thing? If my body has created a way AROUND this stricture, can that perhaps be a good thing? Can that be what is keeping me eating and healthy? Can I just continue like this? I really really do not want more surgery (I know everyone is different, and we all have tricky and complicated reasons for doing surgery or not, and I have full respect for those differences / choices / as well as sometimes feeling like you have no choice). 

Also, has anyone every had a small stricture diagnosed, and then seemed better on its own at a later scope? 

Tags: question, fistula, complicated, stricture, surgery

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Jenners, you may have found the rarest of beasts, a beneficial fistula. Fistulas aren’t usually wide enough to do the function you’re describing (passing nearly all of your stool), so it’s possible that the story is more complicated than you are being told. If you are truly functioning well without pain or other major symptoms then surgery should only be done if the surgeon can explain (to your satisfaction) any significant risks you face without surgery.

Intestinal narrowings can be reversible or irreversible, depending on what’s causing the narrowing. If it’s scar tissue in the wall of the intestine then it’s probably permanent. If it’s inflammation in the wall of the intestine then it might improve with successful treatment of that inflammation (e.g. with biologic medication). If it’s cause by the intestine being pulled or kinked by an adhesion (sometimes misleadingly called “scar tissue”, but these are attached to the outside of the intestinal wall) then it usually will clear up on its own.

Scott F

@Scott F this is good advice.  I feel like you are very knowledgable about this stuff and it makes me feel comforted to find this community. Yeah, a fistula doing all of this sounds weird. I personally think that I do indeed have a stricture, that it is probably very very old (jpouch in 2002, other emerge surgery 2004). But I think that when they found the stricture it was so small partially because going into a scope your guts are in one of the most stressed out phases they can be in, having drank all that terrible stuff that makes you void everything. I am seeing if I can get another scope in a month or two, and looking into alternate ways of emptying my guts in prep. The problems I am having are not with pain or even really poop, its more with anemia and absorption (and then energy, etc..). I just so do not want more surgery.  Le sigh....

J

Many of us don’t use any laxative for pouchoscopy prep. Clear liquids the day before and a couple of tap water enemas the morning of the procedure seems to be enough. I’m not convinced that laxatives cause temporary strictures, but they are certainly unpleasant.

Surgery near your pouch will not likely help at all with anemia or absorption.

Scott F

@Scott F they seem to think the anemia and absorption is from the stricture area, where it is ulcerated and looks like was a frank bleed site.  Do you know anything more about anemia/ absorbtion? I would think clearing up ulcers might stop anemia (at least the kind that is landing me in iron infusions and blood transfusions bi-monthly)? Surgeon's  idea is to remove stricture, clearing up some ulcers (now calling all this Crohn's after 22 year UC diagnosis and pouchitis) and then I guess treating the rest with medication. My personal goal currently is to try and get gut as healthy as possible so perhaps another scope might look more positive and avoid surgery. I know this might be silly, I know these questions might be hopeful at best (perhaps naively so) . But a lot of my research leads me to think that operating so close to jpouch puts it at risk, as well as creating more scar tissue (adhesions, etc...). So I am just trying to figure out ways around it (also from serious PTSD from worst case scenario emerge gut burst surgery in 2004, ha). So prior to scheduling surgery I just want to really exhaust alternatives. It seems a bit of a damned if you do, damned if you don't scenario... Surgery might lead to j-pouch not responding well, not having surgery might result in stricutre/ adhesion problems anyway.  It's tricky!  I really appreciate the input. 

 

J

You can certainly become anemic from bleeding ulcers in any area. It’s generally worth trying to clear them up medically before resorting to surgery. Do you have a good gastroenterologist? Surgeons then to think of surgical solutions first, but there are only a few conditions in which surgery is the first choice.

Scott F

@Scott F yes, I have a good Gi, Dr. Gil Melmed over at Cedar Sinai in LA. He seems really on it. So does Dr. Pasky who did the double balloon endoscopy/ colonoscopy, and Dr. Fleshner is the recco surgeon (I think he is one of bes tin California, and does about 70% of the jpouch cases here. So all seem rather good so far. Looking for second opinion of course. But all three of those people seem to think since the stricture was so tight surgery best option.  I just don't know! 

J

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