Has anyone had dilation on a stricture??? or only surgery?
Apparently I have a nasty stricture (the size of a pinhole, 5cm above my jpouch opening) that is highly ulcerated and seems to have a fistula working its way around it somehow (which explains why I am still able to eat and poop. yeah!). It took them a while to diagnose this; I've had terrible anemia for past two years and they couldn't find source. Seems the ulcers are the culprit, but they cannot work on healing the ulcers without first doing surgery to fix this stricture, as they are worried fixing ulcers, will "heal" fistula and leave me with pinhole size gut. I am so SOOOO not interested in having more surgery (I feel like I have PTSD from the other surgeries, particularly the 2004 when my intestines twisted, burst and necrotized inside me, flooding my abdomen and plural cavity with toxic septic fluid, which they misdiagnosed for 14 hours in the waiting room, leading to 6 weeks in the hospital, gut -resection, drains, tubes, catheters, lung surgery... very unpleasant). Here are my questions:
1. I want to try and do a balloon dilation instead of surgery. Anyone done this? I have been working very hard with alternative stuff and feel have worked wonders on the colitis/ crohn's/ ulcers (whatever you want to call it). I am hoping the "pinhole" might not be so tiny if they were to look again? Am I crazy? Has anyone had dilation on a stricture??? Last scope (with special double balloon) they could not even get a guide wire up the stricture, it was so narrow. But it is only very short.
2. Surgery begets more surgery? Thoughts? They want to do a full open surgery to remove stricture, ostomy bag for 2 months, then close that in a second surgery. It is all a bit complex because stricture so close to opening of j-pouch and the thought of compromising or losing the j-pouch terrifies me!!!! I just really don't want more surgery!
3. I have a 2 year old (fought very hard and had a vagina breech birth because I thought would be safer than having more abdominal surgery. trying so hard to avoid more scar tissue! only to be told need more surgery, ha) . I want to have another kid (we have embryos on ice because of fertility problems). How long do you have to wait after surgery to try tossing in those embryos?