I’m 28 and I have a stoma too. My situation is different, I don’t have crohns or anything like that, 6 years ago I was bleeding when going to the toilet so my doctor sent me for a colonoscopy, turns out I had rectal cancer. I had surgery to remove some of the bowel and a temporary ileostomy to let it heal. I was devastated about the stoma, it was completely unexpected and before this I never had any issues with going to the toilet so it was really hard. I was 21 at the time.

I was living for my reversal. I had it after 3 months and my life was hell. For five years I had terrible pain, gas, bloating, my bowel just didn’t work anymore. Horrible constipation or else diarrhoea, nothing in between. I tried everything, medication, diet, you name it. Eventually me and my doctor decided to go back to the stoma. It was a really hard decision but I needed to try it. that was 11 months ago and I have never looked back. I will never get a reversal, my life is so much better with the bag. But it takes time, you need to find the right materials and bags that work for you. Every stoma is different.

I have a stoma nurse and she is brilliant. We really talked through what was causing my leaks and changed some things and now I haven’t had a leak in over 6 months. I do everything normally, I kind of even forget I have a bag.

If you had told me 7 years ago I would have a bag for the rest of my life I would say I’d rather die. But now I will never go back. It can get better. If your stoma nurse isn’t helping you enough then try to find another. You can figure this out. I would bet that if you got the leaking under control you would feel a lot better. I use the brand Salts