Hello, I am requesting any good information on Humeria with Crohn's disease
j-pouch, for inflammation. Thank you Sheila
Original Post
Hi Sheila,
I've been on Humira for a little over a year now for chronic pouchitis. My pouchitis is behaving like Crohn's and I developed a fistula, which resulted in being prescribed Humira. It has been working great for me. I've cut down my bathroom trips from ~15/day to 4-6x during the day, twice at night (depending how much I eat at dinner and how many hours before bedtime). I still have the fistula but it is manageable - little to no pain there with minimal drainage despite being an open wound (extremely small). The two gripes I have with Humira:
1. When I get colds they seem to hit me harder.
2. I've developed a sort of alopecia on the sides of my head as well as losing hair on my arms and legs. Please take this with a grain of salt - although both my GI and dermatologist believe the hair loss is a result of the Humira, it is an extremely rare occurrence. My dermatologist had never seen anything like it but after doing research she is confident that I am unfortunately an outlier. I've gotten a few rounds of steroid injections into the bald spots and a few of them have grown back.
Luckily I can deal with the colds and just get my hair cut short every two weeks. The hair loss on my scalp and limbs was a bummer at first, however I feel one million times better than when I was suffering from pouchitis. It has helped me not only gain much needed weight (20+ lbs), but has given me the strength to return to office, travel, exercise, go to happy hour with friends, and date (I've been in an extremely healthy/active committed relationship for nine months now). Humira isn't for everyone and there's some trial and error, but for me it got my life back on track.
Hope this helps!