What disease do you have?
It's called Crohn's disease; it's a type of Inflammatory Bowel Disease.
How did you find out?
I was diagnosed 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).
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 and bouts of diarrhea 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, mucus, debilitating stomach cramps, hot flashes, skin issues and more blood as well as bladder issues.
What treatment are you getting?
We are still trying to find a treatment that works. Budesonide didn't work, I had to taper off of Prednisone, and after three months I stopped tolerating Azathioprine. I am now moving on to Infliximab (Remicade; in my case, a biosimilar named Remsima).
Can you not treat it with lifestyle changes?
No, at least not anymore. I was able to accidentally avoid medicating the 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.
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 and then choose decaf, I avoid 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 either. My blood work looks great and I am not deficient in anything.
If you want to know more, check out my health tag.