I was diagnosed with Behçet’s disease in 2013, a rare disorder that causes blood vessel inflammation throughout your body.
There’s also a neurological side, which for me is things like seizures and has given me enteric neuropathy, where the gut stops functioning due to degradation of the nerves and muscles. This is why I have the bowel issues and gastroparesis, a chronic condition where the stomach cannot empty in the normal way.
I’ve suffered with symptoms all my life. I’ve been poorly ever since I was a baby. I’d be seeing the doctor for really weird things for a child of my age. Some of the symptoms were swelling of the joints and I’d have loads of issues with my knees and hips. People thought I was just moaning because I didn’t want to go to school.
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 actually had a seizure on stage after passing out and was then getting ulcerations in the mouth, and then genital ulcers, which is when I went to the GP. They sent me to the gyno clinic and had loads of people absolutely flummoxed as it wasn’t an STI [sexually transmitted infection]. They sent me back to the GP and was just really lucky that I got to see a student doctor who had just completed their study in Behçet’s disease. She couldn’t believe she would meet anyone with the condition and sent me to get tested for it.
I was referred to a London specialist centre and fell under their care. I was Ok for a few years but then had a really, really bad few months. I lost my dad to a brain tumour, my husband out of the blue said he was leaving, and then I lost my nan and my grandad, and my illness just absolutely exploded. I was so ill, an absolute mess. That’s when my stomach started to give up. I was 28.
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.
The chronic constipation came after the gastroparesis, after I stopped being tube-fed. I wasn’t really supported as well as I should have been. I was left with no clue where to go with diet or how to manage the condition. It was hard. All this time the enteric neuropathy was getting worse.
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 bad constipation can be.
I 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. We then realised nothing worked because it’s the nerve that wasn’t signalling, rather than just giving you something to bring all the water from the bowel. It was uncomfortable, my stomach was really bloated and misshapen.
They put me on a drug called prucalopride, which would take a few weeks to work. At one point they didn’t have any gastro-specialists in the hospital at all, which made it very difficult. I was stuck.
It’s hard to explain just how much discomfort and pain you’re in and how it affects your life. I was in hospital being discharged and had been wheeled away from the room and ready to go in the corridor. I heard the medic say: “I’m just going to see the girl now who’s not dying, but just needs a poo.”
That was bad. It really affected me mentally, because my body had changed shape so much. Since then I have been diagnosed with secondary bulimia, because I didn’t want to eat anything. My gastroparesis means I throw up regularly anyway, but I was making myself throw up what I was eating as I didn’t want anything else inside of me. I didn’t want my belly to get any bigger.
I couldn’t fit into any of my clothes. That side of things was hard to deal with as well. I literally brought a whole new wardrobe as I couldn’t have anything tight on my stomach. I’m usually an 8-10 dress size and I was needing 12-14 clothes.
My chronic constipation will flare when I’ve got something else wrong with me. I was getting really bad nerve pain, as the poo was pushing on the nerves, so I was passing out more. My quality of life in general was bad. I’m 32 now and it’s still not exactly great but things have improved.
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.
I’m engaged to someone else now. I met my partner just over three years ago. He’s been a huge support. I also have carers come in to get me out of bed every day and know my routine with my peristeen so they supervise me so I don’t pass out on the toilet or something. They’re amazing support as well.
I haven’t worked since around 2018. I was a singer-dancer and had an entertainment business. Now I just try and manage things the best I can. Every four weeks I have plasma exchange, which has been helping with the gastroparesis. I’m not vomiting as much, but we’re still a long way off getting on top of things. Although I don’t have a great quality of life it is a lot better than it was.
Guts UK provides advice and support for anyone experiencing similar problems. Information can be found here. Catherine’s TikTok video on using peristeen can be seen here.
