Good luck Kim.
Please lookup EDS and read about it, it will not take you very long...go to the Mayo clinic site or anywhere on the internet.
20 yrs ago there was nothing on it or barely anything when they thought that it was a 1 in 20, 000 000 chance of having it, now they have lowered that to 1 in 2500...it is much more common and considered one of the most underdiagnosed diseases in the world.
There is no cure, the treatment is just a list of Do Not Do's and strength and reinforcement exercises, massages for the pain and anti-inflammatories when needed. But, the important part for someone who has their surgeries keep falling apart without any answers to Why is real...if you have it then they can take the necessary precautions to make things hold on and hold up better.
I was at the QLA conference last year as a keynote speaker. It is for those who have or want to have a BCIR...quite an impressive event and feeling to find yourself in a room with 300 other people with continent pouches. So, I asked people questions about their history and background and found 6 with Ehler's-Danlos...6 who had had non-stop repeat surgeries for valve failures, fallen pouches and hernias...so many similarities, so many surgeries that I believe that there might be a link that we do not know about.
People suffering needlessly when precautions can help...
I used to say that any surgery that I have had leads to 6 more, no matter how small or unimportant. They all fell apart. From mole removal to full-blown k pouch surgery.
I have had over 12 pouch revisions in all and it only stopped because they finally listened to me.
They diagnose it by symptoms...read the list and check them off, if you do not have it then fine, but if you do, mention it and maybe it will help.
Sharon