What else do you do??
I was diagnosed with terminal ileal Crohn’s a couple months ago. Budesonide did nothing. I’m on prednisone 40 mg (tried to taper and was moved back to 40) while I wait for labs to start Entyvio.
I used to be so active. Like hike 6 miles with 2200 elevation gain while carrying my pack and 2 year old. Now I live in my bed and get out to go to the bathroom. I know meds should help soon but I want all the out there, weird, alternatives.
Right now I’m trying:
Pilates, on days I can get around and move this helps me feel like a human
Florastor probiotic (some evidence it’s better than a placebo)
Malnutrition panel (awaiting results) to start vitamin supplements
Set up an appointment with a nutritionist
Scheduled an acupuncture and moxibustion appt
I was trying to stick with simple carbs and low fiber diet but my GI said she isn’t a fan and showed studies didn’t prove it helped much so I’m reintegrating more fiber and documenting what triggers me
No alcohol (rare before anyways) no smoking (never did)
Please send me whatever weird things work in addition to your meds. My 4 yr old basically tells me she hopes I feel better on repeat every day while I tell her I can’t do the playground today etc and it’s breaking my heart.