Gory Story

Introduction:

I’m a 67 year old musician from So. California, married, no kids, lots of step-children, grand
children, very active, no prior history of UC or Crohns in lineage.

My Symptoms:

Heavy mucuousy blood, weight gain, not too much stomach pain, sore rectum, sense of urgency with no results (constipation if you can believe that),
flatulence, weary much of the time. Plenty of peeing. Haven’t figured that one out yet.

My Story (and it’s Gory!):

Rectal spotting 11/2011. Thought it was hemorrhoids. By 1/12 bleeding escalates to point I need to see primary care MD. He sends me to GI, had colonoscopy. Am put on Balsalazide. I go into denial, refuse to take 10 pills a day, ask for 2nd opinion. Did 2nd colonoscopy, put on Asacol 2x a day, 3 pills. After 2nd colonoscopy, GI #2 says no bleeding anywhere. Day after colonoscopy, I’ve got blood Sat AM I’ve got more blood. Sun AM is grand mommy of all blood letting. Suddenly from nowhere, I get jaw pain, tell my husband, go to the ER thinking I’m gonna have a heart attack on top of every thing else. I had taken cell phone photos to prove I was bleeding. I get filled with nitro, do labs, heart is fine. I’m admit me; they can’t figure out jaw pain. I get new consult. I show him the cell phone photos I’ve got! Can you believe I had to prove it? He put me on 3 x’s the Asacol, massive dose of Predni sone & Mesalimal enema. Released from hospital. Go to get my script for Asacol filled. I’m in donut hole & $ is $350. I’m out of Prednisone tomorrow. I’m not bleeding. I’ll see about getting more balsalazide. I have osteo-porosis, am menopausal. use Valium when I need it to sleep.

Has anyone here discovered some thing resembling a cure? What works best for you? Do gluten free products make any difference? Does it help to use lactaid tabs to cook with? Doctor NEVER checks my butt, probably not cute enough!

I’m disgusted thinking about this, reading about it, worrying about it. I want answers! It’s new so it’s taking up too much of my time. I’m obsessing.

I’m concerned about my quality of life, finances,
potential for cancer, out of control UC that gets worse & potential for possible surgery.

Where I’d like to be in 1 year:

I would love to be in full remission ASAP, Really, I’d like to be rid of this sucker. I want my life back I don’t want to worry about being on stage, in the midle of an act & pooping. I can’t jump off the stage in the middle of a song to go take a crap.
Embarressing, humilitaing.

I like my colon & all my body parts thank you very much & plan to keep them all. There has to be another way.

Colitis Medications:

Tried Balsalazide but didn’t use enough of it to
know if it was effective; may have to try again.

Prednisone stopped the

Lialda had way too many side effects.

Asacol seems to work in massive doses.

Mesilamil (spelling?) coated the colon (if you love enemas) & seems to have cut the inflamation.

I use Valium to sleep. Sometimes it works, lots of time, it doesn’t.

written by KarpDiem2

submitted in the colitis venting area
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