Struggling with Ileostomy Issues and Surgeon Advice

Replies
61
Views
1996
Kacey
Sep 11, 2025 5:08 am

Hey you, welcome to my world. When I wake up, sometimes it looks like an art studio in my bedroom. Look, you've probably tried flange extenders and all sorts, but if you can, try not to have a full stomach before you sleep. Work out your cycle window if you can; mine is 5-6 hours. I just make sure there's hardly anything to come through during the night, and what there is, the bag will deal with it. If it's not food doing the split, it's gases, and to be honest, I haven't found a bag yet that deals with excessive gas release properly; the filters are rubbish in my opinion. Good luck with everything. If you want to ask me anything, I'm here. Stay safe, Kacey

Panko
Oct 31, 2025 12:50 pm

Hi, change your bags to “SALTS.” Be confident and use Cloplast XL Brava tape extenders to stop the leakage problem!

If you can get an appointment or referral to St. Marks Hospital, which is based at Central Middlesex Hospital or Park Royal Hospital in Acton, as it is the national bowel hospital in England, see Mr. Ian Jenkins; he is the best bowel surgeon and surgeon to the Royals!

I paid privately to see him quickly a couple of years ago for my prolapsed stomach to get it refashioned, and it was done on the NHS.

Good luck, Adam.

Posted by: drfields24

Hello everyone!!!

It has been almost a year since joining this site. I just wanted to share. I know a lot of people get concerned about meeting someone on here. I'm not a lifer membership and I had someone initiate to take me out. I've been divorced since 2009. He lives in Chicago. I ignored the first time thinking he was joking. I live in Milwaukee. So a month later he sent me a message through this site saying he wanted to meet me. That was in April this year. I must say it was the best thing that could happen to me. We talk almost every day. We have so much in common. He comes up all the time to spend the day or weekend together. It really does make a difference when someone has an ostomy like you. Such understanding and we always have something to talk about. I want to share because sometimes people think it's hard to meet someone or they say this site doesn't work. I'm a testimony that this site does work. We are talking marriage this time next year. I will keep you posted.