my relationship to my chronic illnesses
When I was diagnosed with Crohnâs disease, I blogged about it. I processed the news and what it all meant by joining an online group, reading more about it and summarizing it in this post.
Meanwhile, when I was diagnosed with Bechterewâs disease (Ankylosing Spondylitis)1, it made a rather lowkey appearance on the blog and didnât get an educational post. I only recently noticed the discrepancy. Why do I experience myself as mostly a Crohnâs sufferer, while the AS is sidelined?
Iâve likely had both for most of my life, as I remember symptoms at 12 years old already. They overlap a bit in symptoms too, and many AS sufferers have Crohnâs and vice versa. In my talks with the rheumatologist that diagnosed2 me, the Crohnâs was explained as likely being a part of the AS, which is weird to conceptualize; a whole different disease as a symptom of another.
The stereotypical AS symptoms definitely preceded the digestive issues in my life and were more overt for the longest time. Itâs also pain that was constantly minimized and declared normal when it wasnât, and I got so used to working around it for decades that my brain is good at ignoring it. Itâs also a set of symptoms you can generally sideline more easily while you live your life.
Of course, the AS pain can be debilitating; last year while untreated, I had a flareup so bad that I had stiff and painful hands most of the time, holding a cup was often hard or impossible, I could barely walk to the kitchen or toilet, I could barely sleep and I couldnât lift my arms because of my shoulder joints being inflamed. I had a hard time getting dressed, washing myself, feeding myself and all, and my wife thankfully took care of me. But for most of my life, the AS symptoms were things like my heels being inflamed, lower back pain, hip joints being inflamed, being unable to stand for long, manageable ankle pain and so on, which doesnât necessarily chain you to the bed. I was still going to school and helping out at a horse stable during all that because I didnât know any better.
Meanwhile, when Crohnâs disease acts up, I might not even feel safe leaving the bathroom, let alone home, and the pain is so bad it becomes hard to even stand upright. Food is unsafe, and you plan your life around a tiny set of safe foods and available toilets. Itâs way more inconveniencing and in your face. During AS episodes without any digestion involvement, I could take painkillers and if necessary, steroids and go about my day with some restrictions (unless itâs as strong as the last flareup). But with sudden Crohnâs episodes, I cannot work, I cannot do my university stuff, I canât grocery shop or do the household, I stop eating and I have to monitor for bleeding.
AS is like âDamn, shit, I canât really moveâ, Crohnâs is like âIs this tomato sauce or am I bleeding out again? Do I need to go to the hospital?â To me, that part makes it more severe, urgent and potentially deadly.
The way I found out about it and what happened after may also have contributed to it. After months of being in a lot of pain, I finally found out about the Crohnâs disease and promptly lost too much blood and landed in the hospital. But the AS diagnosis was an uneventful âYup, checks out. At least your current medication treats both. If it gets worse, come back.â No traumatic stint in the hospital.
When I have more joint or back pain, I am mostly unimpressed. When I have pain in my lower right quadrant, I start begging the universe for mercy.
I donât know⌠in the end, both is equally bad; you canât get a replacement intestine (or stomach), what you lose is gone and you should keep as much of it all for as long as possible, and having fused joints and a fused spine is horrible.
I think the most difficult thing to deal with when treatment works is that you donât know for how long, when the next flareup, even if minor, will be, and every time you are suddenly in a bit more pain again, you wonder if this is the time it will all come crashing down again.
If you are curious, Zach from the Try Guys has made great videos about his AS I can definitely relate to; you can see why I try so hard with my fitness, daily stretching, nutrition and more. (1) (2)
Reply via email
Published 08 Aug, 2025
Autoimmune inflammatory disease that can cause some of the bones in the spine and in other areas and joints to fuse. The body attempts to heal the inflammation by growing new bone.↩
My health insurance documents keep it more general as âSpondyloarthritisâ because itâs unfortunately not just limited to the spine for me, but colloquially the doctors refer to it as AS, and my infliximab is officially for my Crohnâs and AS.↩