I am a 52-year old female who has had Crohn's for probably 15 years but just recently got the correct diagnosis after I developed fistulas that caused gas, feces and bleeding through the vagina. Was put on Remicade immediately and it helped the fistulas until I had a horrible neurological reaction on the third loading dose and couldn't walk for a month, wound up in a wheelchair.
Now I'm about to take the third loading dose of Humira and have had no measurable results - still pass gas through vagina every single day - and have now developed chronic abdominal pain that NEVER ceases.
In a lot of ways, I wish I could get back on Remicade as at least I knew the fistulas were closing. I am on Prednisone and 6MP so I've also lost over half my hair and have gained 15 lbs. of pure FAT. I have a small frame so 15 lbs. looks like 30 on me. I have the buffalo hump, the enlarged neck....I hate how I look and how I feel even more. I was a vibrant woman with a great husband and career. Now I am in a sexless marriage (my choice - umm how can I feel sexy?) and my life has now dissolved into a sea of pill bottles with unknown side effects. I am having a hard time holding down a fulltime job and that's the hardest part - going to work when you absolutely know you need to be in bed. But life goes on and there's bills to pay despite the Crohn's. I get so tired of it. People at work have stopped asking how I am as they all think I am well because it's been months. They don't understand this thing just doesn't cure itself like a bad cold!
I am so confused about what to eat and what supplements to take. After 10 years of straight diarrhea, I am now constipated most days with a distended belly and bloating. Probiotics aren't helping any longer so my GI doctor has given me that awful before-colonoscopy drink to clean me out. Yuck. I am miserable with the pain. I just want it to end, that's all. I want my life back.
My dilemma right now is my employer is pushing me to go to the Mayo Clinic in MN. They will pay for transportation and we have great health insurance. I just don't know what they would do differently at the Mayo though? I know I don't want surgery yet as from everything I can read, it's such a slippery slope that you can never get back off of.
Has anyone went to the Mayo has a last resort and did they help? Do they really do things so much differently that we may have a better success rate there?
Should I jump on it or wait to see if Humira finally works for me like my local GI doc wants to do? Should I ask to go from Prednisone to Entocort? Will I have fewer side effects?
Any feedback is so appreciated. This is just too overwhelming for me to decide alone. Thanks guys.
Crohn's for 15 years, dx'd correctly Feb 2010, have fistulas. Bad neurological reaction to Remicade, started Humira August 2010. Have had horrible abdominal pain since & lost over half my hair and GAINED 15 lbs.! Humira isn't working, fistulas aren't healing!
52 year old female on Humira, Prednisone (EVIL), 6MP, Ambien, Lortab, Boniva, Calcium, D3, etc.