What disease(s) do you mention in your posts?
I have Ankylosing Spondylitis, also called Bechterew’s disease. It’s an autoimmune disease targeting my joints and spine, making bone grow due to persistent inflammation and at worst, causing the vertebrae to fuse. It's likely also the reason why I have Crohn's disease too, a type of Inflammatory Bowel Disease.
How did you find out?
I was diagnosed with Crohn’s in March 2024. My gynecologist office offered a few standard preventative sample options and because my stool sample showed blood, I got a referral to the gastroenterologist, who scheduled a colonoscopy and gastroscopy. They found scarring in my esophagus, inflamed tissue in my stomach, in my terminal ileum (end of small intestine) and an ulcer at the ileocecal valve (which is where large and small intestine meet).
I was diagnosed with AS in November 2024 after a bad episode of joint and back pain made me ask my gastroenterologist to refer me to the rheumatologist for further testing.What were the symptoms?
I started noticing it in my teen years, when I would struggle with fatigue, acid reflux, skin rashes, mouth and stomach ulcers, mucus, tenesmus, anemia, joint pain, stiffness, high inflammation values and bouts of diarrhea, extreme gassiness and stomach cramps. We tested a lot for different kinds of diseases, especially rheumatoid arthritis, but it was always negative. I got worse after Covid. It progressed to severe lower abdominal pain, proctitis, more fatigue and joint pain, back pain, mucus, debilitating stomach cramps, hot flashes, skin issues and more blood as well as bladder issues.
What treatment are you getting?
Budesonide (via granulate you ingest) didn't work, I had to taper off of Prednisone, and after three months I stopped tolerating Azathioprine. I am now on Infliximab (Remicade; in my case, a biosimilar named Remsima), which first starts off with two infusions at the doctor's office and has since moved to me injecting myself every two weeks with an autopen.
What symptoms do you still have?
Now after a few months of successful treatment, I can assess this properly! As these diseases ran rampant for over a decade without treatment, they of course caused some damage that may take a long time to heal or is even irreversible and my medication has some side effects as well. What I notice in day-to-day life is that I am a bit more fatigued and low-energy than other people, so I may need more rest or I tire more easily. While I go to the gym and am in much better shape than before, I am still often more ache-y during and after than other people - my bones hurt, my muscles burn. I may walk stiffly after resting for a while and have to 'warm up', so you might see me limping a bit after getting up. I also still occasionally have bad gut episodes which are much better and a lot less frequent than when I was untreated, but they may still happen. My most inflamed part that also had an ulcer was my ileocecal valve, and I can usually tell when something passes that part because it still sometimes hurts depending on... how it is formed, I guess? How big the amount of digested food is that passes? So you can sometimes still witness me holding and massaging my lower right quadrant to get it to pass, but it's usually fine. My medication makes me more sensitive to light both on my skin (sunlight/UV) and my eyes (screens), so you may notice me being more diligent about sunscreen and everything being in darkmode with low brightness! I tend to be more sensitive with that right after my shot, where when I look at bright screens for too long I get an aura migraine :(
Can you not treat it with lifestyle changes?
No, at least not anymore. I was able to accidentally avoid medicating Crohn’s disease for at least 10 years, if not longer, by modifying how I live to end any flareups, which unfortunately also delayed the diagnosis. Since it is a progressive autoimmune disease, it gets worse with time. By now, my disease has evolved in such a way where lifestyle changes do not affect the symptoms anymore and I would be severely disabled and harmed if left further untreated. I also need to stop the bone fusion process of AS by fighting the inflammation on top of physical therapy.
To check off some "Have you tried..?"s people usually think of: I already eat mostly unprocessed, often organic whole foods, I know about FODMAP, I avoid dairy and meat since I am vegan, I don't smoke, I don't drink alcohol or energy drinks, I rarely drink coffee, I restrict sugary stuff (both real sugar and sugar replacements) and any other foods I know that cause me issues. I fast sometimes to give my digestion a break. When I feel well enough, I exercise at least 4 times a week (treadmill, indoor cycle, pilates) and I do yoga every day. Any gut microbiome supplements (drinks or capsules) made no difference. I've had years of successful therapy in the past, I journal and meditate, I get regular massages, I take walks in the forest, and I am lucky to have escaped stressful and abusive situations years ago already and nowadays am in a happy, safe and supportive place with a great partner. My job is not stressful at all times either, and not physically demanding. My blood work looks great and I am not deficient in anything.
If you want to know more, check out my health tag.