Hi MRW.......interesting post. To be honest, I'm not understanding how your stoma could be that big. So my first question that comes to mind is why did it get bigger? I mean that's an abnormal outside diameter for bowels, which if healthy, would mean the ID is also way bigger than normal. If the ID is normal sized, then what's going on with the bowel wall itself to make it so large (thick)? Whatever is going on I'd want to fix that BEFORE I did anything surgically. Otherwise, if not corrected what's to stop it from doing it again after the surgery?
When I spoke to my surgeon about getting my stoma "fixed" a while back we ended up having a very candid conversation. What I learned is that placing a stoma is a pretty much hit or miss proposition surgically. Obviously experience of the surgeon matters the most......so make sure you have a good one. Don't be afraid to ask your surgeon how many times he/she has done something similar.......and how many bad outcomes did they have. Surgeons like to tout their successes, but rarely talk about their failures. And you don't care about the successes, just the failures (in the event you become one). Also make sure you have at least 2 other opinions from different surgeons regarding this operation. If any of them don't jive with what your surgeon is telling you (about the procedure or the outcome) you need to stop and get that sorted out. Minor differences in technique are to be expected, but anything significantly different in how they'll approach this should give you pause. The other thing I learned is they can't just cut your stoma loose and reposition it....they have to remove about 6-12 inches of it and start with new bowel......which for me is a show-stopper, but you might have plenty.
As for what they'll fill the gap with.......they'll just stretch your skin and muscles to fill it. There's nothing you can put in there as a substitute for either that the body won't reject. But skin (and the muscle underneath) are pretty pliable, so no worries........just don't expect to be doing any sit-ups any time soon. The real issue is that you'll be further weakening that area of your abdomen, increasing your risk for developing a hernia. So I'm sure you'll be briefed on all that pre and post-op.........but if not, be sure to ask how that will be prevented and if that solution (like a belt) is permanent.
I'm really curious as to why your stoma is so big. If you know, or when you find out......please let me know. PM is fine if you'd rather not put it out here.
It has always been pretty big from the outset, probably grown around 15mm over that time. I think the surgeon wanted to do the op way back but then COVID hit.
Generally though, I have not had any real problems, few bleeding scares early on but nothing recent.
My biggest issue is that the output hole is next to and level with my skin so if I don't fit the bag properly it undermines the plate causing leakage, pain, soreness, etc, etc which I have no doubt members have experienced.
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Just been reading on another group someone who has the same problem as you. Their stoma started getting bigger 18 months after surgery. They're still waiting to see what can be done about it. I think theirs is about 60mm and still getting bigger. They have a hernia as well, that could be a possible cause for their problem.
I can only guess. I would think they will resite your stoma to the other side of your stomach. You would be surprised the amount of bowel left inside you, so don't worry about having it resited if that's what the surgeon thinks is the best option.
To be honest, all you can ask is why did it happen if they haven't already told you, and can they do anything to help.
My surgery schedule has now changed, still going in on 20th October but only for a consultation under general anesthetic so he can plan what he wants to do. So, we will have conversations about what they are planning after then. Surgery is looking like early December or January......