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FostyMember

I have been having issues as my last few posts. With narrowing of the pouch after 10 years. Went for pouchoscopy yesterday and my doc said the pouch is narrowing which has been causing me problems such as cramping and itching burning. I ALS had a partial blockage a few weeks back. She said I will probably need to go back to the stoma sooner then later. It would improve my quality of life and travel plans for the near future. She also mentioned I could end up in hospital out of country and insurance won't cover ore conditioned illness which would cost more money. Has anyone experienced this and had a different outcome or would this be the end if jpouch journey?

9/5/1412:41 PM

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jeaneMember

Is the pouch narrowing or the anastomoses connection? Did he tell you why this is happening? Do you have active inflammation in the pouch? If so, medicines can help. It it is the anastomoses connection they can dilate you to help. My biggest question for your GI would be why is this happening and would any medications possibly help you retain your pouch.

9/5/1412:57 PM

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FostyMember

She said they could keep dilating but it is chronic and meds won't help. I am meeting with her again next Tuesday to discuss further. I am also 60 now and would like to travel but not with these ongoing issues.

9/5/141:08 PM

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jeaneMember

For what it's with I have been dealing with ongoing narrowing of the anastomoses and my Gi dilates every six months to every year at my scope. I have not had blocksges however and I'm not sure what other bothersome symptoms you are encountering also. Best of luck.

9/5/144:24 PM

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clouseauMember

I have had my pouch about 20 years and have traveled to at least 35 countries in that time.
I have had blockages in Russia and Ireland but got thru it with only 1 hospital visit. if you travel prepared with enemas, and bowel prep for colonoscopies and be sure you have red wine or cranberry juice nearby at all times. I always have pads and calmoseptine and have to use the bathroom every 1.5-2 hrs so plan ahead. You can do it! Also I get diliated every 6 months at Cleveland Clinic and have a digestive enzyme before every meal and drink a lot of water. I have a couple strictures and even 2 fistulas that fortunately don't cause much problems. I am 59 also.

9/10/146:20 PM

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FostyMember

Thanks Cleaseau! Good advise. I'm now using an irrigation tube with a lax and it seems to be helping although early days.

9/12/149:25 PM

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