I went to see Dr. Shen, after a scope and a an MRI he told me my pouch was 90% twisted. He has referred me to a surgeon I see in 2 weeks. I am freaked and don't understand how this could have happened or how they correct it. Any information would be greatly appreciated.
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JD,
It can happen...my k pouch is twisted and has been on and off for about 5 yrs now...it happened when the anchorage tore or there was a fundamental shift inside...
Depending on the how and why it can be fixed, possibly with laporoscopic surgery...they put mine back into place that way twice but it doesn't hold, the k pouch hangs off of the abdomen...so it should be easier for a j pouch to stay put once fixed...
They will probably do a couple of exams before deciding...technically this is an easy fix...
Hang in there
Sharon
It can happen...my k pouch is twisted and has been on and off for about 5 yrs now...it happened when the anchorage tore or there was a fundamental shift inside...
Depending on the how and why it can be fixed, possibly with laporoscopic surgery...they put mine back into place that way twice but it doesn't hold, the k pouch hangs off of the abdomen...so it should be easier for a j pouch to stay put once fixed...
They will probably do a couple of exams before deciding...technically this is an easy fix...
Hang in there
Sharon
That is how I experienced my one and only obstruction which landed me in the hospital for 6 days. Worst pain ever! My surgeon held off operating and kept me on morphine and monitored me closely. Finally, it untwisted all by itself. Thank God! That was over 10 years ago. Best wishes.
what does a twisted pouch feel like?
For me, the pain I experienced was worse than being in labor and giving birth. Morphine took care of the pain.
My pouch twisted once from taking Lomotil. Never again. I thought I was being ripped open. Scary crap.
The best that I can describe the twist is like being on a huge rollercoaster and plummeting strait down...that feeling that your stomach is coming up your throat? That is what it felt like but in my pouch plus the bonus of a semi-occlusion...same when I untwisted it...like a kick in the stomach (pouch) and then sudden nausea and relief all at once...
Sharon
Sharon
Mine felt like a charlie horse on meth. Only way to describe it. Felt like my whole pouch was trying to rip off my abdomen. I took lomotil when I had dumping issues to slow my gut down and the food froze or something in the bowel. I think the bowel wasn't working so it was just a horrific experience.
I started having obstruction about 1 year after my final surgery. I was doing perfect until then. The waves of pain are much like labor pains. The worse labor pains ever. They found out my pouch was twisting. I was scheduled to have surgery to attach the pouch down so it can't twist. In about 3 weeks.This week I had another obstruction, the worst one ever. Back n the hosp. Looks like I am having surgery in two day now. Happy to hear this has worked for others, sorry for those who who it didn't work for.
Good luck for the surgery!
Sharon
Sharon