Seeking Advice on Double Barrel Wet Colostomy

Hi, I have a colonoscopy after beating stage 4 rectal cancer. However, my bladder does not function due to radiotherapy damage, and I'm on the waiting list for my only option of a small hole under my existing stoma for my pee to come out. It's called a double barrel wet colostomy. I can't find anyone in the world that has this and wondered if anyone here has it? There has only ever been 20 of these operations done in the UK, and I'm a bit worried. At the moment, I self-catheter and wear the biggest awful pads in my pants, which are so uncomfortable but needed. The operation will be for a better quality of life, but I need people I can speak to that's been through this so they can answer my questions. Thanks x

Xxxhazelxxx, I had to Google double barrel wet colostomy after reading your post. It sounds like the simplest fix for your situation. I'm sure others on here will have advice and support for you. I would just encourage you to have confidence in the doctor who will be performing the procedure. Best of luck to you for a good outcome.

Thank you for your reply. Unfortunately, I have not come across anybody with this, and I'm in quite a few of these groups from all over the world. I have found out that from the 20 people that had this done, most of them have died, but I'm assuming it's been through other related illnesses. I am staying positive, but I'm very anxious about the whole operation just because it's so rare. There's not even a stoma bag for this; it's just a case of making do with what we have, i.e., cutting the hole bigger. But as you know, as soon as fluid hits the sticky part of the stoma bag, it swells and leaks begin. I just don't want to do something I'm gonna regret xxx

Knowing nothing about this, why can't you have an urostomy and just have 2 bags? I know there are people on here with that. Anyway, good luck.

I understand not wanting to do anything you'd regret. Does your doctor know anyone he or she can put you in touch with? I'm sure not or you would've been in touch already, I guess. Have you been made aware of every option available to you? And, yes, those twenty people may have been older or had pre-existing conditions.

Words of Encouragement from Ostomy Advocates I Hollister

https://www.mskcc.org/cancer-care/patient-education/caring-your-wet-colostomy

This is an article through Memorial Sloan Kettering Cancer Institute in NYC. I know this is not around the corner from you, but it sounds like they're familiar with the procedure and maybe can advise you.

Hi xxx,

You should find lots of info here

https://pubmed.ncbi.nlm.nih.gov/37087331/

:o)