I posted a couple of things today and realized I didn't say hello first. I just came across this board today and am hoping it will help me! There's not really anyone to talk to about this kind of stuff, so it's nice to get to read all of your thoughts/advice/venting.
I was diagnosed in Oct 2007 after being constipated for 10 weeks and hospitalized. My husband and I were married in September '07 and I think the stress of all the planning made me sick. I like to say that I got a disease from my wedding! I remained in a flare until about December. When I started tapering off of Asacol to try to get pregnant (with my GI's consent) I had another really severe flare in June '08 that landed me in the hospital for about 10 days, 2 blood transfusions, 4 months worth of Prednisone, loss of 23 lbs, change to Lialda, and being out of work for 3 months! I changed GI's and my new one says to never taper my meds no matter how good I'm feeling. Not a fun thing to hear at 23...
Besides the normal crap that we all have to deal with like accidents, the nausea every time I have a BM, depression from it all (at least for me!), I think I worry most about the effect that it has on my husband. He puts up with so much and waits on me hand and foot every time I get sick, but I feel bad that he basically has to deal with the disease as much as I do.
Anyways... that's my story in a nutshell. Oh, and is anyone else losing handfuls of hair every day from Lialda? I have about 1/2 inch depth of baby hairs on my the crown of my head from where it is all falling out. VERY frustrating.
23 year old female
Diagnosed with UC in Oct 2007 after being hospitalized
Last hospitalized again for 10 days June 2008. Needed blood transfusions, steroids for 3 months
3 pills daily of Lialda
2 Canasa (rectal suspension) daily
No white flour, no sugar, no potatoes, no white rice