Just as I had hoped things were going to settle down a little with my health after the turbulent year that has been 2024, I have picked up another unexpected diagnosis of inflammatory enteropathic arthritis —one that ties closely into my IBD.
I have officially been diagnosed with arthritis—something I suspect I’ve had for many years, but countless doctors had trouble identifying which type it was. Traditionally, it’s considered unusual to have arthritis until you’re 40 years of age or above, and because of this, there is a lot of gaslighting in the medical community surrounding it. “You’re too young to have joint issues” is a sentence I’ve heard too many times in rheumatologists’ offices, and yet here we are.
Back in July of this year, my day-to-day joint pains (which I’ve always had) got so much worse, to the point where I couldn’t use my hands— even typing was excruciatingly painful. As someone who works with a laptop most of the time and uses it as an outlet to communicate with the world, this was horrifying in every way. Alongside this, I started to notice radiating pain in my knees, back, and jaw, accompanied by swelling.
“Waking up is hard to do, but sleeping is impossible too”—those lyrics rang too true for me. You wouldn’t believe the pain you could experience from simply lying flat on a bed, but it was keeping me up at night. Once I did manage to sleep, waking up was a process of trying to unstiffen and get myself moving slowly, which would take several hours. There’s nothing glamorous about looking like a 90-year-old and making the noises of one to boot.
I saw my GP, who took one look at me and told me to go to A&E. Although I wasn’t at a critical stage, there is little to no pathway within the NHS for urgent arthritis support, and the risk of leaving it to progress to permanent damage is not a worthwhile one.
At A&E, I was once again admitted to the same ward that I was originally on for my ulcerative colitis. It was here that rheumatology saw me and decided that my arthritis was the inflammatory enteropathic type.
So, now what?
IE arthritis goes hand-in-hand with IBD. According to the Cleveland Clinic website, Arthritis is a chronic condition involving swelling and pain in the joints. IBD is chronic inflammation of all or part of your digestive tract. If you have IE, you have both chronic swelling in your joints and inflammation in part of your digestive tract. Unless, of course, you’re like me and have had your colon removed.
It appears likely that the intensive treatment I had over the last year for my colitis had actually also been helping my then-undiagnosed arthritis. Having had so much, and such strong medication, which I was then taken off of once I had my surgery, appears to have triggered a nasty arthritis flare, which has built in strength over the summer.
The good news? Enteropathic arthritis can be controlled and brought into remission using drugs. The bad news? I’m most likely going to end up back on infusions—the same infusions I was on for my colitis—in order to manage it, as thus far, steroids and sulfasalazine haven’t worked. When I got my stoma, I really hoped that would be the end of my days having infusions. I didn’t take particularly well to them, and they were a major factor in my hair falling out as badly as it did; however, I’m keeping positive about it! At least I know this time that I’m not contending with a colon that’s dying on top of everything else, so I would like to hope I’m slightly more robust. Time will tell.
Arthritis and IBD
I find arthritis a bit of a tricky subject to post awareness about, as it’s for the most part invisible, and in my case, one of my worst symptoms is pain. However, I’m going to do my best to keep talking about it and answering questions where I can because it’s important! I didn’t know that there was such a thing as inflammatory enteropathic arthritis, and in hindsight, if I did, a lot would’ve made more sense.
If you have any specific questions for me, please do ask, and I’ll be happy to do my best to answer!
In the meantime, I have a rheumatology appointment next week to discuss the next steps, as well as a spine MRI. Once I know more about the route I’m being put on with medication, I’ll do an update. Until then, I shall continue creaking around like an old floorboard. Generally, my arthritis gets worse with the colder weather—so if this is me in August, I dread to think how I’ll be by December. Stay tuned to find out!
