Dense adhesions after 15 surgeries, + 2 rare medical conditions

[Eegmetem]

At the age of 25, my life changed forever. After 4 years, 2 surgeries and no diagnosis, as to what the problems was, I eventually found out I had multiple intestinal lipomatosis and Ehlers Danlos Syndrome. Ileostomy formed 1996. 13 more surgeries have performed.

Due to absorption problems, + major reactions to a lot of painkilling medication, my then Colorectal Surgeon, prescribed IM Pethidine for my abdo pain. This has been controlling my pain very well, until the beginning of 2024, when it was abruptly stopped when I had to be admitted to hospital.

Oral painkillers - done absorb enough, due to the lipomatosis and not having a lot of small intestine. Still in severe pain.

Morphine Patches - 10 microgram patches, triggered severe migraine, vomiting and did not help control abdo pain.

Have angulation of small intestine, just under my belly button. I have to press on my abdomen 3-4 times a day to get my waste past the angulation, so it can empty into my stoma bag. Abdomen bruised and painful.

Been trying to cope with pain, but exhausted and in so much pain. Pain Team have been of no help and have not really listened or tried to understand my complicated medical history.

Can you help?

JP

[Raemac]

Hello Eegmetem so sorry you are living with horrible pain . I’m sorry I know nothing about your medical conditions , but do understand how it must be affecting your life , pain is so difficult to live with .

I have ileostomy and dense adhesions after many surgeries for endometriosis and diverticulitis and release of adhesions blocking my bowel . This has left me with inability to eat any solid food which causes the bowel to block . I am now on a liquid diet of Modulen to cope with this, it does stop my bowel blocking . I don’t know if this might help your with your pain . I do think that pain management are not very helpful if you have a complicated problem .

I’m sorry I can’t be of any more help and really hope you can find someone who can make your life more comfortable. I have just started meditation to help with pain , not sure yet if it will help , anything is worth a try . Perhaps something like this may help you .

Sending my best wishes and hope for some comments that may be helpful for you.

[bassets]

You poor thing. I'm really sorry you are having to live with this, it must be exhausting. I understand how awful the pain must be for you. My cousin had her most of her bowel removed at around your age. However she is now well into her 70's and living a happy life. Best wishes and good luck for the future.

[GoldenPupLover]

Check clearpassage.com their total focus is non-surgical treatment for pelvic adhesions.