Living with Chronic Constipation: ‘I Couldn’t Poop for Three Months’ Due to Behcet’s Disease

In 2013, I was diagnosed with Behçet’s disease, a rare disease that causes inflammation of blood vessels throughout the body.

There is also a neurological side, which for me is associated with things like seizures and caused me enteric neuropathy, where the intestines stop working due to the destruction of nerves and muscles. That’s why I have bowel problems and gastroparesis, a chronic condition in which the stomach cannot empty properly.

I’ve had symptoms all my life. I’ve been bad since childhood. I would go to the doctor for a kid my age with really weird stuff. Some of the symptoms were joint swelling and I had a lot of problems with my knees and hips. People thought I was just whining because I didn’t want to go to school.

I’ve always had infections, mouth ulcers, and it wasn’t until I got a little older that it really started showing up. I was a singer-dancer and just couldn’t dance like everyone else. I was told that I was a lazy dancer, but that was only because I couldn’t get to the last part of the movement because my joints were very bad. It was simply dismissed as a growing pain, but by the time I reached my late teens, I thought something more serious was going on.

I actually had a seizure on stage after I passed out, then I got mouth ulcers, then genital ulcers, and then I went to a therapist. They sent me to a gynecological clinic and stunned a lot of people because it wasn’t an STD. [sexually transmitted infection]. They sent me back to an internist and I was very lucky to see a medical student who had just completed a course of treatment for Behcet’s disease. She could not believe that she would meet someone with such a disease and sent me for an examination.

I was referred to a specialized center in London and treated there. For a few years I was fine, but then I had a very, very bad couple of months. I lost my father to a brain tumor, my husband said he was leaving out of the blue, and then I lost my grandparents and my illness just exploded. I was so sick, a complete mess. Then my stomach started to give up. I was 28

I had to be tube fed as I fell about six rocks. The attacks were uncontrollable. Since then, I have struggled to get back to life. My probe had to be removed because Behcet’s disease began to attack her from the inside. Since then I have had bowel problems.

Chronic constipation appeared after gastroparesis after I stopped feeding through a tube. I wasn’t supported the way I should have been. I had no idea where to go with the diet or how to deal with the disease. It was complicated. Meanwhile, the intestinal neuropathy worsened.

I have been suffering from very severe chronic constipation for about two years. The longest period when I did not have a chair was three months. It was downright awful. This influenced me a lot. People underestimate how bad constipation can be.

I ended up in the hospital twice because of this. I have every laxative in the world, the drugs that people give before a colonoscopy. Nothing worked. Then we found that nothing works, because the nerve is not signaling, but just giving you something to get all the water out of the intestines. It was uncomfortable, my stomach was really swollen and disfigured.

I was given a drug called prucalopride, which was supposed to take several weeks to take effect. At some point, there were no gastroenterology specialists in the hospital at all, which made the situation very complicated. I am stuck.

It is difficult to explain how uncomfortable and painful you feel and how it affects your life. I was in the hospital, I was discharged and rolled out of the ward, ready to go out into the corridor. I heard the paramedic say, “I’ll just go to a girl who’s not dying, she just needs some shit.”

It was bad. It really hit me psychologically because my body has changed so much. I have since been diagnosed with secondary bulimia because I did not want to eat. My gastroparesis makes me vomit regularly anyway, but I forced myself to vomit everything I ate because I didn’t want anything else inside of me. I didn’t want my belly to get bigger.

I didn’t fit into any of my clothes. This side of the case was also difficult to deal with. I literally brought a brand new wardrobe with me because I didn’t have anything tight on my stomach. I usually have a dress size 8-10, but I needed 12-14 dresses.

My chronic constipation will worsen if something is wrong with me. I had a very strong nerve pain due to the poop pressing on my nerves, so I passed out even more. My quality of life was generally poor. Now I’m 32 and still not very good, but getting better.

I depend on peritoneal lavage, which I have to do 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 intestines simply will not get rid of anything.

I am currently engaged to someone else. I met my partner a little over three years ago. He was great support. I also have caregivers who pull me out of bed every day and know my routine with my periston so they supervise me so I don’t pass out in the toilet or something like that. They are also great support.

I haven’t been working since about 2018. I was a singer and dancer, I had an entertainment company. Right now I’m just trying to figure it out as best I can. Every four weeks I have plasmapheresis, which helps with gastroparesis. I don’t get sick that often, but we’re still far from it. Although my quality of life is not very good, it is much better than it used to be.

Guts UK offers advice and support to anyone facing similar issues. Information can be found here. Catherine’s TikTok video of using Peristone can be viewed here.