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New to the Disease, Tired of it Already

Introduction:

35 yr old Male, diagnosed with Ulcerative Colitis in January 2012. Under control with presdisone and asacol until October 2012. Currently in 6 month flare, progressively worse in the last 2 weeks.

Some more about me:

Father of four (aged 7 and under), partner in my own business and travel a lot. I am a firm believer that stress has A LOT to do with flares given a very stressful time in October 2012 and at the end of March which has compounded my current flare.

My Colitis Symptoms:

Pretty standard, multiple loose BMs x day with bleeding, abdominal pain, joint pain (prob due to being on prednisone for 6 months). Since I started taking 6MP sometimes when I take my meds I get dry heaves at the same time as I am on the throne, can’t decide which side it is going to come out of.

BMs are worse at night and morning. Can’t seem to make it through the night without a few (like clockwork at 2 and 4 a.m.). Usually 3-5 events before I leave in the morning.

New to the Disease

I feel like I have always had a “nervous stomach”. As a kid I would be in an unfamiliar place, get nervous, stomach acids get churning and I end up in the bathroom.

Fast forward to October 2011 and I cannot pick a single event that would have started the flare but nonetheless, it started. Colonscopy in January 2012 confirmed UC. Given prednisone (40mg) to stop flare and asacol to maintain. Felt OK until October 2012. Had a very stressful event and flare came back with avengence. Back on prednisone (40mg) with no luck. Follow up colonoscopy in January 2013 actually showed improvement since prior year, now inflammation limited to descending colon. Now we are trying 6MP, prednisone and asacol HD to try and get this flare under control.

I am a partner in my business and travel a lot (car and air) to meet clients. I have learned lots of ways to deal with travel days and client lunches but in the back of my mind the fear an unexpected bathroom emergency is always there. I have explained the situation to many of my coworkers because they need to understand why I am not the first guy to the office like I used to be (I plan for a minimum of 2 hours from when I wake before I even plan to leave the house to account for morning BMs which are the most frequent and severe). Everywhere I go the first thing I do is locate the bathroom and actually go in to check it out to make sure it is suitable (# of stalls, doors on stalls, etc.).

I had been trying SCD since Feb and it worked pretty good until the last few weeks with the most severe flare. Nothing seems to work. Thought maybe it was the flu so I went with the BRAT diet, no luck and actually I think my body reacted even more negatively by introducing carbs again. I honestly have no idea what to eat anymore.

Now that it is getting warmer I am getting concerned that I won’t be able to get this thing under control and it will affect my work activities (golf is one of my major ways of interacting with clients but there aren’t many bathrooms with easy access on the golf course). Also have annual fishing trips, guys weekends, etc. where we spend lots of time out on the lake (again not a lot of bathrooms nearby). But I need to stop worrying about it because, again, I think stress is a big reason why flares hang around.

Since I am just over year into this I want to believe it is going to get better but I remain somewhat pessimistic.

Medications & Supplements:

For UC – 50mg Prednisone, 100mg 6MP, 1600mg Asacol HD 3x/day, 80 billion Ultimate Flora probiotic, 15g L-glutamine (thanks Bev this seems to help), 3000mg Vitamin D, 1500 mg Calcium, Multivitamin, Fish oil, B-complex

Also have anxiety and ADD so I take 10mg of Lexapro and 54mg Concerta daily

written by Kevin

submitted in the colitis venting area