It’s been one month since I was formally diagnosed with enteropathic arthritis however I’ve been struggling with symptoms for over two years. Getting an arthritis diagnosis is not easy, especially when you’re younger, so I thought I’d share how I got here.
If you’re a regular reader of KTMY, you’ll know that I already have ulcerative colitis. Something I didn’t know is that there is a close relation between IBD and certain types of arthritis and apparently 1 in 5 people with IBD will also get an arthritis diagnosis. Whilst arthritis is not curable, it is manageable and a lot of the treatments between IBD and inflammatory arthritis are similar.
How I got my arthritis diagnosis
It’s taken me about two years to get an actual diagnosis. I’ve seen two different rheumatologists which is why I’m such a big believer in getting a second opinion!
What arthritis symptoms did I experience?
Over the past two years the symptoms I’ve experienced have been;
- Lower back pain (which, when I still had part of my bowel and rectum was even worse during and IBD flare)
- Neck pain with less movement as symptoms got worse
- Swelling of fingers, wrist, knees and ankles as well as joint pain
- Stiffness and a real heaviness to all my joints making it hard to move
- The feeling that my legs couldn’t hold me up
- Fatigue (which was really bad during flares)
I wasn’t 100% sure what my joint pain was at first. I first started feeling the pain after my first surgery however I’d lost all my muscle and was classed as medically anorexic so I thought it was just because I needed to build up the muscle again.
Over the past 8 months, my symptoms got a lot worse to the point where some days I just couldn’t move. It was one of the reasons I quit my waitressing job, because the pain during and after a shift was unbearable and I’d wake up in the night with the worst back and leg pains.
My journey to being diagnosed
Getting diagnosed was not easy. The first time I went to the doctors with joint pain was in June 2016, just over a year from my first surgery.
The symptoms I was experiencing here were no where near as bad as they got. It was mainly ankle and knee pain and occasionally I’d get this feeling that my legs wouldn’t be able to support me.
The doctors sent me to physio where I had about 4 sessions. As well as the physio, I was going to a ballet based exercise class which worked on stretching. It quickly became apparent that none of it was really helping the pain and the physio sent me back to the doctors who referred me to one of two local hospitals.
I wasn’t at my normal hospital when I went to see my first rheumatologist mainly because the waiting list was a lot longer. I had an MRI scan which came back normal and they said they couldn’t see anything wrong. I was discharged and sent on my way with no explanation as to what was wrong with me or why I was in pain.
Because I’d been told this, I carried on with my life. I’d go through periods where the pain was worse but sometimes I was okay. Being chronically ill, I don’t think anyone thought it was strange that I felt like shit sometimes, myself included. I didn’t want to go back to the doctors because the specialist had told me I was fine too.
It was January 2018 that I noticed my joints getting a lot worse. I was experiencing back and neck pain as well and would wake up in the night with leg pains and back pain. I was also experiencing a bad IBD flare which was why I brought forward my ostomy surgery.
In March, I finally went to see a new doctor at the GP (who’s interest is in rheumatology). As soon as she read my notes and saw my symptoms she referred me to my normal hospital to see their rheumatology department. I was told that there is an arthritis which goes with IBD and it doesn’t always show up on X-Rays and MRI scans, unless there’s severe damage.
When I went to meet my rheumatologist three weeks ago, she immodestly diagnosed me with enteropathic arthritis which I was told was what they call it when you have arthritis and IBD. It’s a type of spondylitis which is an umbrella term for enteropathic arthritis (EnA), Ankylosing Spondylitis (AS), Psoriatic Arthritis (PsA), Reactive Arthritis (ReA) and Undifferentiated Spondyloarthritis (USpA).
My treatment plan for enteropathic arthritis
After doing a lot of reading into arthritis, I think my treatment plan is actually quite different. I’ve been put onto Simponi (golimumab) injections straight away which are a biological drug.
Normally, before you go onto biologicals, you’re meant to have tried all of the other drug options such as steroids, anti inflammatories and methotrexate however I think one of the reasons I went straight to biologicals is that none of those options worked for my IBD (and in the case of steroids actually made my joint pain worse). As for methotrexate, my doctor didn’t want to put me on it as I’m still quite young.
I’ve just had my first injection of Simponi which has made me feel a little bit rough and will take 3 months before I’ll feel any benefit. I’m going to do a separate blog post all about biologicals! (so send over any questions and I’ll answer them there!)
So that’s my arthritis diagnosis story! Leave any questions in the comments below and let me know if you have IBD & arthritis because I did NOT know that the two were so closely related.