If anyone has any experiences or info, please share with me as I'm starting to feel very discouraged
Backstory: I was diagnosed with IBD and had a colectomy with end ileostomy in 2009. Didn't have any problems with the stoma or leaks, I actually had my life back!
Fast forward to 2017- in December, my stoma prolapsed and got strangulated (no blood supply), so I had emergency surgery (they cut off the prolapsed/dead part and a 'new' stoma was made in the same spot I had my original stoma).
I had a surgical site infection (below the incision) and part of the incision was re
opened and packed daily until it healed from the inside out. It fully healed almost 2 months later.
So, its been 4 months since the surgery, and things are not better:
My abdomen BULGES on both sides of the incision/scar- it looks like two butt cheeks (sorry, but best way to describe it). In the morning when I first wake up, its soft and not as noticeable, but by the end of the day it is really BIG and very firm (like a trampoline). My stoma moves a lot too- it retracts and becomes flush with my skin, and other times it sticks out a good 3-4cm (my old stoma never did this).
Its not painful, but there's a discomfort and 'fullness.' Before the surgery I had a very flat belly, so whatever happened was after the surgery.
1) It is likely a hernia, but since its on both sides could it be a parastomal AND incisional hernia?
2) If anyone has had a hernia related to an abdominal surgery or stoma, could you please share your story/symptoms/advice?
3) Has anyone had a hernia repair? Did it recur after?
I do not have the option of a jpouch, so I'm worried where they will relocate the stoma to if both sides of my abdomen have hernias... it always feels like a losing game with this disease.
Wishing everyone good health!