Struggling with Stoma Issues and Considering Revision Surgery

Hi everybody!
I think I've reached a point where I am having some serious issues. I had urostomy surgery in March 2016, and it took several weeks to find a product (Coloplast) that worked. A few years later, I started leaking and changing way too often with the Sensura models, and switched to the Sur-Fit Natura Convatec two-piece system. Please also note that I didn't need to wear a belt, didn't use any rings, and changed probably every 2 to 3 days. Until now.

This summer has been nothing but a disaster. At first, I was changing regularly every two days; now I get at most one day of wear out of any system. I leak in public places, and I can't do a thing about it. I even considered just sticking a Foley bag at the end of my pouch so that water won't be sitting in there anymore. I just don't know what to do.

So, my friends, is this the point when a patient begs for revision surgery? My stoma has been a pretty convex, cranky thing since the beginning, and it just isn't working anymore. It is seriously affecting my quality of life, sleep, laundry habits, social interactions, and peace of mind.

Just to make sure you have all the facts, I was diagnosed with multiple sclerosis in 1999, diabetes type two in 2011, chronic kidney disease, and then the eventual bladder removal in 2016, and now I have a brand new diagnosis of rheumatoid arthritis as of three weeks ago. I have also recently been experiencing some major asthma symptoms, which might be related to the horribly hot and humid summer we've been experiencing up here in God's country… (That would be Massachusetts for anybody who doesn't know yet). I had been working up until last year, and then I was let go during a probationary period for reasons I truly believe are medical-related, but there's no way I can challenge them and no way I want to. I already applied for SSDI and got the typical denial, so a lawyer is working on the appeal. I suppose it is a blessing that I'm not working, but times are tight.

Well, I think I've taken just about enough of your time. I apologize for any grammatical and spelling errors… I just wanted to get this out because I'm feeling pretty low right now. Thank you!😊

Your sign-off was a smile.

Good for you.

Sounds like this is a toughie.

Can't help on the eurostomy - because I know nothing about them.

But hang in there - others will surely come to your rescue.

Best positive vibes en route to improve your situation.

~ ~ ~ ~ ~ waves from the UK - still warm evenings - hottest summer since my childhood, so that will not have helped, I guess.

Hope stuff improves.

Good luck.

~ ~ ~ ~ ~ Jayne ~~ ~ ~ ~ ~

Revision is certainly something to consider.

However, I'd try a barrier ring and a belt first.

I use the SenSura Mio system with both a barrier ring and a belt, and I usually get 7 days between changes. My urostomy is also a bit below skin level.

What works for me may not work for you, but I'd think it might give you a bit more security and at least prevent or cut down on the accidents while you wait for a revision.

You need help with finding the right product for your stoma so it does not leak.

Get an appointment with an ostomy nurse ASAP. And call the various ostomy bag manufacturers like Coloplast and Hollister, explain your problem, and they will send you free samples. Then, after the issue is resolved, look for another job. You have a lot of years ahead of you; work helps you feel more normal because the focus is off your health issues. (I have been blessed ??? with more than one chronic disease too.)

Sadly, I have tried that combination. I even found a convex barrier ring, which is kind of cool. I have to admit. I am probably going to try it again since I’m Given a new opportunity to use different things every 12 to 24 hours so… I thank you very much for your kindness

How to Adjust to Life with an Ostomy with Bruce | Hollister

I agree with Maried. Best to find an ostomy nurse to assess your situation. The stoma location is not static. It changes if you lose weight, gain weight, or as your body just changes with age and other factors. Different eyes may be able to solve your leaking problem.