Struggling with Ileostomy Reversal: Need Support

Hey bag buddies,

I thought I'd give an update on my situation. I had my colostomy reversed 12 days ago, and had a protective ileostomy created, with the goal to reverse that in 2 months.

The surgery was more difficult than they anticipated, because they found a lot of large adhesions and damage from the peritonitis I had back in November. They also had to remove my rectum which I hadn't anticipated.

My new ileostomy has been giving me a lot of trouble. I liked her at the start, but we're now sworn enemies! There's three reasons it's being so problematic: it's retracted so that it's now flush with my skin, it's very close to the stapled wound and that has created a big indentation in my belly so there's no even surface for the wafer to stick to, and I have very, very watery output. So basically I'm doomed.

I know this will all get better, and even if it doesn't it's just for another 7 weeks, but it is really affecting my emotional well-being at the moment. Last night, after two hours of trying fruitlessly to get a wafer to stick, I began to imagine slamming my head into the sink to knock myself out. Thankfully I didn't act on it, but I don't like to have these dark thoughts.

Anyway, I'll get through this, and really I'm so fortunate that an end is in sight.

Clair

Hang in there.... A lot of us can only dream of reversal

You'll get there, girl. You'll sort the ileo soon and will be on your way.

You can do it...'

Hi Clair,

Flush stomas are a pain, no doubt about it. They're just not supposed to be that way, and most ostomy products and barrier systems just aren't designed to deal with the problems they cause. You might want to give the folks at Nu-Hope a call; they tend to specialize in the tough or odd stoma situations and have a variety of products for those applications. When I got my stoma revised a couple of months ago, the incision ran right up to the bottom of my stoma, and I ended up busting my stitches, and the incision got a bit infected. As the incision healed, I got a small depression right at the incision, so I started using Hollister's Adapt paste just in that one area to level the skin. And that worked as it's supposed to. I tried Adapt paste years ago with my pretty much flush stoma, and it didn't like being exposed to the constant output barrage and broke down pretty quickly... so no guarantees on that one. Nu-Hope might have something better. They also have a non-adhesive barrier that's really just a big silicone O-ring that's held against you by their belt. Makes changes a simple quick matter, and I know a few people who claim that system is a life-saver. There was also a product someone talked about on here... I'm pretty sure it was Lovely, but we haven't seen her on here in a bit... that was like a plastic "lip" that went around the stoma and guided the output away from the stoma while protecting the edge of the barrier from getting hit directly with your output. I'll see if I can find her post, as I referred people to it on here a few times and really need to find it for them, and anyone needing it in the future. If/when I find it, I'll let you know.

;O)

Wow, thanks so much for all the amazing advice.

I'm not in the US so Nu-Hope isn't an option for me. But I do have an amazing stoma nurse who's bringing me different things to try out all the time. It's just unfortunate that none of those things have worked yet. She's gonna bring a paste to try on Tuesday, so let's see if that helps.

That O-ring sounds really interesting, I'm gonna look into that for sure. And the plastic lip too, I wonder how it's attached.

Thanks again,

Clair

Clair,

I am so glad you only imagined banging your head against the sink. Can you imagine the pain that would add on waking up? Last year I had to explain to my physical therapist how I managed to bruise my arm on the sink when I fell because my daughter had made slime on the bathroom floor and didn't clean it up... it was dark... instead of using my good arm to catch myself I used the bad one that I was in physical therapy for. I think you need to come up with an epic nemesis name for your Stoma. I was picturing you swearing at your stoma in your Irish accent... not funny in the moment... but after?
My loop ileostomy was a pain. It would stick out well during stoma nurse visits then retract and be stupid. The picture is what finally worked for me. I had an indentation to the right and was constantly getting leaks- could never get my output to the consistency it should be. I would feel my skin start burning before it could cause a mess so I guess that's good? Kinda? Before using a ring I would build in the indented area with pieces of Hollihesive I cut up and paste. I treated it kinda like an art project. Sometimes it looked better than others. I hope tomorrow is a much better day. 7 weeks right?

Thanks for your reply. I'm actually using that Sensura Convex bag right now too. They were trying to avoid using convex bags while the stitches are still so fresh, but nothing else worked, and this seems to be a bit better. I got 12 hours without a leak! My nurse pulled off a bit of a barrier ring, made it all squishy, then filled the indentation with that, before putting on the convex bag. I hope I'll be able to fit it as well as she did.

I've named my stoma Dolly Farton, and she's had to listen to me swear at her quite a bit, no wonder she's stopped being good to me!

Yay for 12 hrs!!! It's a start!!!! Did they trim the stitches down at all for you?

I love the name btw. I was trying to get my daughter to get a Dolly Parton shirt (we were headed to a red, white, blue/Miss America themed party for my niece since the party was Memorial Day weekend here, and we have to wear our colors).

Hello Clair, please hang in there. Only 7 weeks left. Sure you will soon find a method to suit your specific condition. I am also waiting for my colostomy to be reversed either later this year or early next year, but I am full of anxiety about it because I have a trouble-free stoma at the moment and don't know what a reversal will have in store for me.
Good luck

Sorry, I didn't get back to you guys sooner. I was sent back to the hospital a week ago because I'd become very sick. Diarrhea, vomiting, and a lot of pain scooped on top.

Well, it turns out the retracted stoma was the issue. It meant that the second hole from my loop ileostomy disappeared and was secreting liquids under my stoma, which burned constantly.

They decided to operate, but they were not positive that a reversal would be possible this soon after my colostomy reversal, so I was told to expect to wake up with a new stoma. Well, guess what, they were wrong. I'm two days stoma free!!!!! Rip Dolly, I always hated you.

Congrats on waking up from a surgery to an actually pleasant result!

Sorry for what preceded it though.

Congratulations, Clair. A wonderful surprise for you.

Congratulations, I am glad everything went well for you. I am also waiting for a reversal but I don't know when because there is a long waiting list. Please keep us updated with your post-stoma experience. Thanks