Losing My Life Over Colitis

Introduction:

Hi y’all. I’m Jen. I was diagnosed with UC back in in January of 2012. I first felt ill in October of 2011, on my birthday actually. Thought it was food poisoning at first cuz had bad cramping, diarrhea, bloating, pain, nausea, and vomiting. It wouldn’t go away tho so ended up seeing Pcp 3x and two Gi dr.s who did c diff tests but came up with no results.

In January finally after 3 months of feeling awful and having blood in my stool, couldn’t sleep at night due to 9-10 bowel movements a night, and bad pain; I ended up in the hospital with bad anemia weeks later they stopped treatments and felt worse since. Tried lialda, prednisone, asacol, canasta suppositories, pentasa, 6mp, an now imuran.

Been hospitalized at least half a dozen times and had six colonoscopies.

Some more about me:

I’m 26 years old and have lost a lot of weight but so bloated I look pregnant and fat all the time. I love to play softball but the bending acerbates my symptoms. I just want to live a normal 26 year olds life.

Symptoms:

I’m currently in constant pain, gassy and cramping, bloated, blood with every stool usually clots, diarrhea every stool, nauseau if I don’t eat, and can’t hold my bowel movements when need to go. Have 6-10 bowel movements a night and 5-8 a day. But Dr. says that the imuran started April 5th can take 8 weeks to work.

Losing My Life Over Colitis

I’m so frustrated cuz my Dr. sent me home in pain, with blood, 15 bowel movements a day, diarrhea, and nausea cuz my blood work looked fine and so did my colonoscopy. This was Tuesday the 9th of April. I went home on the imuran and prednisone but hes certain that I will feel better on these meds but it may take months. I hate living like this and doubt that the prednisone and imuran will work. Been on prednisone during a flare up before and it makes it better but been on it straight since march and not feeling better at all. I don’t know what to do and becoming cranky and aggravated. I want to see a new Dr. and go to a new hospital but not sure how to advocate for myself so they don’t send me home again me being this miserable and having the same or worsening symptoms. Please help!

I feel like I will never have a regular bowel movement or feel comfortable eating out. Even going to the mall is so hard because of the fact that when I have to go, I have to drop everything I’m doing and find a bathroom. I’m embarrassed and feel unattractive around my friends and especially my bf. I used to be healthy as can be before this disease. Never had been hospitalized, could eat anything, and loved giving blood. Now they can never find a vein and have to put in a pic line when Im hospitalized to gets meds and to get blood out. I’m compliant with my meds and try to know everything about my disease but no one seems to listen. In the beginning they mentioned it may be beneficial to have a colostomy but now they don’t. I know I’m young but willing to try whatever may work so I can be me again and not defined by my uc.

written by Jen

submitted in the colitis venting area