Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Saturday, March 17, 2012

First Week on Imuran

  UC = ulcerative colitis          BM = bowel movement  

I intended to start this blog about two weeks ago when I first started taking Imuran.  That plan was short-lived when the drug hit me like a Mac truck.

I have been putting off immunosuppressants for as long as possible because they are scary.  From my research via doctors, medical websites, prescription reviews, and message boards, I know that Imuran (a.k.a. azathioprine) can cause a host of very serious health problems ranging from various cancers to deadly infections.  As a teacher with no immune system, I would have to be very vigilant and cautious since any little cold if not treated right away could put my life at risk.  In addition, the drug can cause a variety of other side-effects, the most common ones being severe nausea, headaches, and hair-loss.  However, at this point in the progression of my disease, I am out of options.

I took my first pill hesitantly, expecting the nausea to be immediate.  I was wrong.  I felt fine.  "Well, maybe this won't be so bad, after all," I said to myself.  I also felt fine the next day and prepared myself to go about this whole immunosuppressant thing with a positive attitude.  I knew it wouldn't be easy - hell, I was still sick and I was going back on the dreaded prednisone (more on this later), but I was ready to make the best of it.  I was prepared to face the struggle; I was prepared to battle the side-effects of prednisone and the symptoms of my disease.  I was NOT prepared for Imuran.

By day two I felt like I was dying.  I woke up so exhausted I could barely get out of bed and so nauseated I couldn't even get down a single bite of food.  Little daily tasks like going to the bathroom or making myself a sandwich felt like I was climbing Mount Everest.  Every action I had to make throughout the day took an immense amount of will-power and left me drained.  By lunch I had worked up a little bit of an appetite and ate something, which only made me feel worse since digesting food took up too much energy.  As soon as I got home from work I crawled into bed and did not come out.  This is the pattern I kept for the rest of the week; I was like a zombie walking around at work.  More fatigue, more nausea, more fatigue, and every day crawling under my covers as soon as I walked through the door of my house.

This lasted for exactly one week.  Somehow on day eight - overnight - I felt better.  Not chipper, but better.  Over the next week I was still tired all the time and still coulnd't eat much in the mornings, but at least I was able to function. Now, at the end of week two, I am still feeling pretty crummy, but I am hoping to try and get my life back.  Three weeks ago I was eating super healthy, weight-lifting, and training for a half-marathon.  Starting Monday, I'd like to get back on that horse.  Maybe I won't be going full speed, but at least moving forward.  I know sticking with my fitness goals will be more difficult as I wage war against the side effects of the Prednisone, the Imuran, and the symptoms of my disease... but I'm a fighter, and when things get tough, I get determined.

T H I S   W E E K ' S   H E A L T H   L O G

My Condition:  Mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms:  Cramping 3-5x/day, very loose BMs 5-10x/day, mucous, a lot of blood with every BM, moderate amount of gas.

Currently Taking:  Azathioprine (50mgs tapering on), Prednisone (40mgs), Asacol HD (4800mgs), mesalamine enema.

Current Diet:  No restrictions at the moment.  Plan to clean it up starting Monday.

Current Exercise:  None for the last two to three weeks.  Plan to pick it up starting Monday.

Have Tried:  Lialda, Endocort, Prednisone (dependent), Canasa, Cortico-foam, probiotics, L-glutamine, licorice, various other supplements, Specific Carbohydrate Diet, FODMAP diet, various other dietary changes.

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  1. UPDATE: The most likely reason I was having such a hard time with the Imuran was that I had an intolerance to the drug - my body could not digest a certain protein in the pill, causing what is known as "serum sickness." Check out my post "Trouble with Imuran" or do a quick search online for more info. But I have heard of plenty of people who also have no side-effects with this drug, so this is no reason not to try it. Different treatments always work differently with everyone. Good luck to ya!

  2. Sounds rough, this doesn't sound like something I am interested in taking anytime soon, maybe if its my last option. Luckily, my is still mild to moderate at the moment/


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