After 12 Years of Colitis, Still Looking For an Answer

Sher’s Colitis Experience:

 

Hello all!

I was diagnosed w/ Ulcerative Colitis about 12 yrs ago at the age of 22. My symptoms started after a month of an antibiotic called “Sumycin”, all though my GI does not think this was the cause of my UC. I find that very hard to believe b/c the sumycin caused so much pain to my tummy, but being young I thought I had to continue the antibiotic no matter what! Wow, do I regret that. I had also had the vaccine for Hep B, not sure if this had any relation either. I started off with Asacol, didn’t know I had a life long disease I thought Asacol had cured me after 2 months, wrong again. My doctors, at that time, never educated me on what I had and I ended up in the hospital. I was on steroids and had to have a blood transfusion…. Haven’t been hospitalized since, thank God! But my struggles weren’t over. The first few years I had periods of remission for several months followed by flare ups and more steroids. I’ve been on Asacol, Entocort, Colozal, prednisone , Imuran, Lialda, Apriso, pain meds… you name it! The crazy thing is when I decided on my own to discontinue the expensive drugs and see what happened on my own not much changed! Not the end all, but at least I wasn’t paying for expensive treatments.

Ulcerative Colitis has effected every aspect of my life. I used to be very social. I barely have any current friends because I don’t like to leave the comfort of my own home very often. I hid my disease from my coworkers, my husband, friends and family. I am divorced, my husband did not understand my disease.. he thought I was “making up” a lot of my symptoms to avoid things (not entire cause of divorce, but didn’t help). I continue to work a full time job, but most the time do not feel well.

My current situation… I have not had any periods of remission for at least 7 years. I have several trips to the bathroom in the AM, I am usually ok for a few hours during the day with the help of lomotil. After lunch I go again, and then in the evening bloating, pain, more trips. It’s usually mucus and/or unformed stool, rarely blood. I wouldn’t even mind the trips to the bathroom if the pain and bloating weren’t there. I get panic attacks in stores. I usually wake up at least twice in the middle of the night. I have back and joint pain. When I take pain killers this usually all goes away, but can’t live on pain meds forever, and do not always have them.

I refuse to take prednisone ever again, so many bad side effects! I usually feel somewhat better when I am off gluten, not as much bloating… Oh yeah and that time of the month is the worst, sorry “guys”. I have been on sulfasalazine for the past week, haven’t notice much change, but it is cheap.

To make matters even better I do not have health insurance! After my divorce I had to find my own policy, and was rejected due to UC… I have to wait 6 months until the ins. I finally found will cover anything UC related, and the insurance I found is through the roof, wish we had universal Health Care sometimes!

I am here b/c I found this site to be uplifting when feeling so bad, and there are others out there like me! My GI does not seem to care, it takes him like a week to even call me back, for a while there I thought he even thinks I’m a hypo… I have a few “?’ for all to answer

Has anyone’s Colitis started after long use of antibiotics … Sumycin or other?

Are there any alcohols that do not disturb UC? (not an alcoholic, barely drink, but Xmas party coming up)

What works best for day to day joint pain?

Has anyone heard bad side effects of being on lomotil for long periods of time? (I take it almost daily to get through work)

Current Colitis Medications:

Currently taking probiotics, sulfasalazine, and lomotil

Will never take prednisone again!