Ask Laura – having a stoma with a rare condition - Trio Healthcare

When 28-year-old Laura Brown was diagnosed with Ehlers-Danlos Syndrome she struggled for many years to have the stoma she knew would improve her life. She’s now on a mission to make sure more people with rare conditions get the medical treatment and products they deserve.

“I’d heard of EDS but didn’t think it meant me”

I’ve always had problems since I was born but when I was twenty things started to get worse. I had a lot of gastric problems, nervous system problems and issues with my bones and joints. I was referred for genetic testing and that’s when they diagnosed Ehlers Danlos Syndrome – a condition that affects your connective tissues.

With EDS, the genes that make collagen are faulty. It means my organs are quite floppy and fragile, my muscle movement isn’t normal, and the motility of my bowels is very slow. Eventually my bladder, uterus, bowels and rectum all prolapsed, and I couldn’t go to the toilet normally at all. Surgeons said it wasn’t possible to repair the damage and that my last chance was to have a stoma.

“I’d wanted a stoma for years”

I was happy because I’d actually wanted a stoma for many years. Local surgeons were very dismissive, they made me do lots of treatments that didn’t work. I was glued to the toilet doing daily bowel cleanses, suffering with abscesses and haematomas. For a long time I just had to put up with it. Finally, I saw a specialist in London who scheduled my surgery.

I had a loop ileostomy procedure last October and it all went fine to begin with, but it turned out the surgeon had incorrectly hooked things up which meant my stoma was connected to my defunct colon. This meant lots of leaks and sore skin. In April, they refashioned it, but it was bit of a disaster. My stoma ended up going necrotic and I’ll need even more surgery.

“Despite all the problems I love having a stoma”

I want everyone to know about my condition because I don’t think there are enough resources out there for people like me. The things that can go wrong after surgery are different for EDS sufferers. We’re much more likely to have a stoma prolapse and herniation. Doctors also seem reluctant to give stomas to people who don’t present with the typical illnesses, such as cancer and IBD.

Although some things have gone wrong, I love having my stoma. After the surgery, I just felt like me again. I can go out and not have to worry about where the nearest toilet is. I didn’t appreciate just how life changing it would be. Finding the right products makes such a difference, too. Having something you can rely on where you don’t have to worry about leaks is so important. The team at Trio has really helped me to discover what works for me and have been so supportive.

When you have stoma surgery you have to give yourself time to adjust to the changes internally and externally. I was quite emotional at first, but now I can just see all the positives. I’ve never had a career due to my illness, but I want to go back to get my ‘A’ levels and go to university. This wouldn’t have been possible without my stoma but now I can start to think about my future and getting back to work. Maybe I’ll become a stoma nurse!

About the author: Laura is an ileostomist living in Northumberland with her family and two dogs. We will always do everything we can to help ostomates share their stories. If you’d like to become one of our guest bloggers, please get in touch.