Living with chronic constipation: ‘I was unable to poo for three months’ 🔴 Catherine Ray-Stevens’s tells PMGallagher1 how her rare condition is so easily dismissed, even by health staff at times, but causes her immense pain
I was diagnosed with Behçet’s disease in 2013, a rare disorder that causes blood vessel inflammation throughout your body.
I always used to get infections, ulcers in my mouth, and it wasn’t until I was a little bit older that it really had an impact. I was a singer-dancer and just couldn’t hit the dance moves like everyone else. I was told I was a lazy dancer, but it was just because I couldn’t get to the final stretch of the move because my joints were just so bad. It was just dismissed as growing pains, but as I got into my late teens I thought there was something more serious going on here.
I had to be tube fed as I’d gone down to about six stone. The seizures were uncontrollable. From that point I’ve been fighting to try and just get any kind of a life back. My tube had to be removed because the Behçet’s disease started attacking it from the inside. Ever since then, that’s when I’ve started to have the bowel trouble.
I’ve suffered with really bad chronic constipation for about two years. The longest I’ve gone without being able to pass any hard stool was three months. It was utterly horrendous. It affected me in lots of different ways. People underestimate just how badI was hospitalised twice because of it. I was given all the laxatives under the sun, medicine that they give people before a colonoscopy. Nothing worked.
A plasma exchange every four weeks has helped Catherine manage her condition, but her quality of life remains compromised. I have to rely on a peristeen irrigation, which I have to do myself daily or every other day [peristeen is a transanal irrigation system consisting of a rectal catheter with an inflatable balloon, a manual control unit with a pump, leg straps, and a bag to hold water]. Otherwise, my bowel just won’t get rid of anything.
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