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13 Years & Counting
Hi All!
I've had a fully functioning J-Pouch for 14 years with very little issues...lucky, I know! Last December I had a complete blockage for the first time. It was resolved, but it was determined that I have narrowing up high in the inflow tube. Because of the location, there isn't any "corrective" surgery that can be done. Since then I generally feel a little bloated up high, & it's a bit more difficult to go to the bathroom. I had a Sig done a week ago & my Doctor saw several strictures, which is part of the reason why I feel it's difficult to go to the bathroom, although I do go throughout the day. I saw the surgeon this week & it's my choice as to what to do...dilate them or not. I also didn't realize that's it's generally not a 1 and done procedure. I'd like to hear from anyone who has had strictures, addressed the issue and left them alone. I'm worried about the small chance something goes wrong & I'm into emergency surgery for a bag, along with will I have an incontinence issue? What's the recovery from the procedure? (I didn't think to ask that question when I saw the surgeon!)My son's Bar Mitzvah is 6 months away & I don't want to be going thru multiple procedures every month & then not be able to enjoy this milestone. I'm a physically active person & I want to remain that way without a bag for as long as possible.
Thanks for the input! Smiler

Replies sorted oldest to newest

J jeaneMember
I am not sure I can answer your question in full as I only have a s stricture at my anastomosis outlet. It has been dilated several times under anesthesia, As of today I am functioning fine, but whenever I have some inflammation in my cuff, it impacts the stricture. I also assume I will periodically need dilations as that has been the case since I have had my pouch created. At this time, they have only been manual and no balloon dilations as of yet.

I am guessing they advance into your pouch
with the scope and just reach up higher to dilate your stricture(s) as they are at the inlet. I am not sure how you have multiple strictures at one site. At any rate, there is always the possibility of perforation of the pouch, but it is a very small risk.

I would be more concerned as to the reason you have developed strictures after all this time. Do you have active inflammation that is contributing to narrowing of the inlet?. Is this just old scar tissue that is showing up now as the pouch is advancing?

I know when my strictire acts up I want to get it dilated as trying to empty my pouch when the outlet is so narrowed is painful and very uncomfortable and causes me to have repetitive trips to the bathroom to fully empty which is also very annoying. Also, I have never had incontinence issues after a dilation..sometimes just a little blood.
J
13 Years & Counting13 Years & CountingMember
Thanks for your reply Jeane. The stricture(s) I have are lower in the rectum, not at the narrowing of the inflow. I was experiencing inflammation which was treated. It's all somewhat puzzling. My surgeon wants me to have a Gastrograffin Enema before he does anything so he can see the entire anatomy. I suppose it's better to have this issue addressed...while the surgeon isn't pushing anything, he does think I'll ultimately feel better. Thanks again for your insight.
13 Years & Counting
P PDXDavidMember
I'm confused.

In your first post, you indicated the stricture was high up in the "inlet tube." I assume that means the small intestine leading into the pouch.

But then you say in your second post that it is in the rectum.

I don't have any experience with strictures above the pouch, but I have had many dilations at the cuff where the pouch is connected, both digital and balloon.

I find the balloon is better. It seems to last longer, is more precise in stretching to a definitive diameter, and is much less traumatic in general.



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P
J jeaneMember
13 years
My outlet stricture is much better now since treating my cuff inflammation and after having several dilations. I find inflammation definitely worsens my symptoms. I agree with the gastro enema procedure. Although I have never had one, it should provide answers for you. Good luck. Do not get discouraged. This is pretty treatable. It is possible you may have some scar tissue from the inflammation that healec and that could have caused some narrowing.
J
13 Years & Counting13 Years & CountingMember
Thanks for your input. To clarify, I have narrowing at the inflow "tube" leading to the pouch that's high in the "tube." This is a problem that due to the location is being left as is. (Can't resection due to location, balloon very risky so as long as I can deal w/ it, it will stay as is & hopefully not get any worse.)The stricture(s) are lower. 2 different areas. Decided to go ahead & do the Gastrograffin & the dilation. I need to speak w/ my surgeon again to clarify a few things for me before I set it all up. Really appreciate the input/experience!
13 Years & Counting
C clouseauMember
I have 2 strictures at least above and below pouch and go toDr Shen in Cleveland for balloon dilitataions every 3 months. I still get blockages occasionally but now have a digestive enzime before every meal and drink much more water than I did previously, Dr Shen recommendations and that has helped. Also no nuts or fiber and I try to chew well. My narrowing is very small so hardly anything fits thru my strictures even after dialations.
C

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