I didn’t think at 27 years old I would be writing this blog post. I’ve kept my journey of health conditions very public in the aim to normalise and also keep up the conversation on them. Some of you may already know I have had Crohns Disease for 15 years now and Endometriosis for about 5 years. Much to my disappointment, I was also officially diagnosed with Arthritis about 2 weeks ago. I wanted to write up my personal journey with the diagnosis, tests and my outlook going forward. This isn’t easy to talk about being so fresh right now but it’s something I am trying not to judge and hate about myself.
For about a year and a half now I have been experiencing various pain in my joints. It started in my left wrist and I would get numb hands and tingles. On top of that, I’d also experience pain in my elbow and shoulder. I remember this coming on after having a lot of blood tests so I assumed it was bruising or injury for that but it kept persisting.
For a while, doctors thought I had carpel tunnel or ‘tennis elbow’ from my job of being on a computer. It took a lot of back and forth to the doctors until finally after telling my Crohns specialist, they mentioned people with Crohn’s are more prone to joint problems. It was then I realised it was probably a bigger issue then everyone around me was saying. Not a lot of people took the pain seriously, to be honest. I think people thought I was just being lazy. It was quite a hurtful and hard time to try to get this discomfort recognised. After struggling for at least half a year I was finally referred to a rheumatologist who specialises in joint problems.
Once I had a specialist, things moved fairly quickly and I had some testing done on the painful areas. I had an ultrasound on the joints which showed up some inflammation in the soft tissues and tendons around the elbow and wrist. It just took that simple test to show and confirm that there was an underline issue there.
Going forward a year and I have still been battling pain and gradually worsening symptoms. Both my wrists play up and most recently my knee has, which affects my mobility. I was offered a steroid injection that is injected into your bottom and that’s to help ease inflammation and pain. I’ve had 3 of these now and every time I get the injection my pain practically disappears for at least 4 weeks and it’s magical. The only issue with these is they aren’t recommended long term before they can start to weaken the joints, can cause harmful side effects and can interfere with medications for my other conditions.
Other than steroids nothing else has worked that we have tried. A discussion was had between my Crohns Specialist and Joint Specialist to alter my Crohns medication as that could be impacting things but my Crohns specialist doesn’t want to change them. As the medication for my Crohns involves suppressing my immune system, they need to keep it at a level to actually work and keep me in remission. Due to being on them before I need a higher dose so my body doesn’t create antibodies and resist the medication from working.
My only other options were drugs to target the disease in the blood and therefore potentially help the joints. Very annoyingly for 3 months now I have tried a drug called Sulphasalazine which has made me so sick. Side effects from this have been the worst I’ve ever experienced. With severe stomach cramping, it takes my breath away, toilet troubles and bowel irritation. The next option is a drug called methotrexate which can cause fertility issues so obviously at my age that isn’t a consideration for me to go on right now.
As you can already tell my body is like a complicated puzzle. The issue with treating not one but several conditions is how one can affect the other and medications can cause issues for one condition but help another. It’s almost a battle of prioritising what can give you a better outlook.
Although for about a year now I have been aware my joint issues have been related to having Crohns Disease, an autoimmune condition, it wasn’t until 2 weeks ago I officially got a diagnosis is a form of arthritis. The type I have is called Enthesitis which affects where tendons meet the bones, causing inflammation.
At the moment it is hard to say what my outlook is. Somedays I can be really positive and others I literally want to jump off a cliff. Okay, so that’s being dramatic but basically, I’m finding it hard. I can’t think about the future as it’s a huge anxiety trigger for me at this point. My outlook in the short terms is simply to put myself first and my comfort and hopefully things will improve. Medication options aren’t great so I intend on researching herbal ideas to see if I can find relief there. It’s a new and sometimes scary situation to be in. My quality of life is affected and my mobility, you honestly don’t realise how lucky you are until something is taken away from you.
I’ll keep fighting and trying my hardest to rise up from this. If you have experience or know anything that was successful then let me know. Ideally, I don’t think I can handle another conversation with someone telling me I’ll be cured by going plant-based because I can’t do that with my Crohn’s disease the way it is. Unless I want my bowel to have blockages and potentially rupturing then that’s a no go.
Anyway, thanks for reading and apologies if there’s a slightly somber tone to this piece. Fair to say it’s not going to be an easy journey but it’s my life and I have to try somehow.
Read more about Arthritis on the Versus Arthritis website