I have had my rosebud (colostomy) since '97.
The rosebud shrank in size over the years, I had troubles getting anything but linguine to come out, and a stoma revision was suggested by the butt-surgery bigwig surgeon in my network.
So I did that. Didn't receive much information beforehand, had to make an extra appointment because I wanted to make sure she understood that I had concerns about having enough colon in my fat layer to make a good stoma. I emphasized that I did not shy away from loosening it from the muscle layer to "pull more out" in order to give me adequate length. Going by a 6+yo CT scan, she assured me that there was enough. Ok, you're the doc, I guess you know what you're doing.
Surgery day - the pre-op experience was full of red flags for me; these people did not seem to be on the same team, there was a red/brown stain on the gurney sheet, the anesthesiologist leaned in to me to ask me if I had a problem with him (yeah I was cranky but seriously??), and I almost walked out. I wish I would've.
This new stoma... OMG. It's pretty, hole right in the center, good height to where it meets the skin, but the daggone thing is 2 inches below my abdominal skin!! It's like a cherry sitting in the bottom of a funnel! The edges go straight up - I can't get anything to stick to the sides and the stoma pulls under the wafer no matter how convex it is!
I have a bathroom full of samples, including some customs from Nu-Hope. No matter what I use, how much I layer rings/paste/etc, how tight I belt it, the peristomal area is constantly soaked in poop, itches/hurts, and I am pissed.
I voiced my pouching frustration during the post-op appointment and the only response I got is that the whole thing could be relocated - something I was very clear about NOT wanting to do from the get-go ("no problem, we can just make it bigger"). The only thing I can think of is doing lipo around the area to try to even out the area.
Yes, I know there are many difficult stomas out there and I have been very lucky throughout the last 22 years. I could wear a wafer for over a week easily, wore them for 14 days in my uninsured years when I was buying stuff from eBay. I could always trust the appliance and the ostomy was never in the forefront of life. Now... leaking all the time, having to leave work constantly because of it, getting more and more pissed about it.
Thank you for reading and letting me rant.
I'm curious if any of you with difficult-to-pouch stomas make some of your own supplies. What I need is a very flexible funnel flange and am going to make some silicone rings (although I have tried the Silvex rings and they definitely don't stick... but they're also way too shallow). Or: make some funnels out of hydrocolloid sheets. All in all, I'm super resentful that I have to go through such lengths... nothing prepared me for this deep hole in my belly.