it’s been a while since I wrote on this thread, but if anyone is still following and/or looking for help for similar issues, I thought I’d post an update.
its November, I’m 9 days post op from a laparotomy/diverting ileostomy. The year went from bad to worse. By mid year I could no longer eat solid food and have been living on liquids/Boost, and in hospital like a rotating door. I honestly don’t know how this was allowed to get to this point, but my surgery was eye opening....
Despite having every diagnostic test under the sun, CT, MRI, scopes, defocography, Sitsmark, nothing really definitive showed up so I (finally) convinced my surgeon I wanted an ileostomy. She went in and said my abdomen was a “trainwreck”. My pouch had a large twist in it, there was a piece of bowel wrapped too tightly all the way around it and another piece pinned underneath it, and soooo many adhesions she needed 5 hours to even make a dent in Lysing them. I’m 9 days post op now and still in hospital as my bowels just wont wake up which worries me as they thought pre-op I may have a motility issues, but already feel so much better getting that all out and disconnected. I may opt for a new pouch, or remove it, or just leave it, but she said I can live with my loop ostomy indefinitely and I just want to enjoy being healthy again for a while.
the moral of the story is, keep fighting. I KNEW all this time there was something very wrong going on inside me, but kept getting run over by a medical system that likes things in easy to treat boxes and definitions. I honestly think I may have died if this didn’t get taken care of soon. I hope this helps a few of you here who have posted with similar issues.
I am so sorry to hear that! I hope things get better though!!! I am glad you have a loop, I think you should keep it instead of getting a new pouch- the same problem might happen again with the new pouch. I hope your ileostomy works out!
I wonder what caused that to happen to you? And I wonder why all of your problems did not show up on the tests??? I hear about that a lot actually, about having to go in and see the problem. Too bad that stuff does not show up on cat scans and such.
Keep us posted