I am a 40 year old female active IT Professional. I am an avid runner, hiker and kayaker and love the outdoors. Camping with friends is where you’ll most likely find me on the weekends. In 2011, I completed an incredible journey to get healthy; I lost 105 lbs over the course of 11 months. I avoided diabetes and high blood pressure. Unfortunately, about 4 months into my journey, I started experiencing some strange symptoms. I put it off for a while but finally got in to see my doctor. We made diet changes and tried Immodium AD: neither worked. I received a referral for a GI and had a full colonoscopy with biopsy in April of 2012. I was diagnosed 2 days later with Severe Ulcerative Colitis throughout my entire colon.
Severe watery diarrhea (I go between 10-20 times a day)
Lack of sleep
Severe abdominal pain
Rapid (unintentional) weight loss
Bleeding (recent development)
Lack of nutrition
Nausea (from abdominal pain)
Since being diagnosed with server UC my life revolves around a toilet. This is a major drag for me as I love to run, hike, kayak, backpack and camp. We are (or were) very active people who love the outdoors. Now my main thoughts are “where’s the nearest bathroom” and “what if I can’t make it in time?” I have learned to carry a ‘spare package’ at all times now.
My husband and friends are very supportive, though my husband is having a hard time coping with my bad days. My doctor is great, really nice and supportive. They are very concerned with getting my symptoms under control without hospitalization.
I have had 2 “unfortunate incidents”: a small one at work (was able to wash undies out and dry them in the server cabinet) and a major one in a grocery store. Very humiliating. Since then, I have no shame. I openly joke about my incidents with family to lighten the mood when moments get tense. Some family (family closest to us) have no idea how to help/support me. They just don’t get it and I don’t have the energy to attempt to educate them either. So there are times when I feel very isolated: frustrated and depressed.
I am most concerned about getting my symptoms under control and going back to enjoying my active lifestyle. Right now, everything is on hold as my doctors try to get me under control. No running, no training, no heavy exercise. I’d love to be able to go anywhere and not have to immediately scope out the restrooms. To be able to go on a road trip and not have a panic attack because the next facilities aren’t for 50 miles. To be able to actually sleep through the ENTIRE night (haven’t had more than 2 hours of solid sleep in months)!!
Where I’d like to be in 1 year:
Symptom / Flare FREE!! I’d LOVE to be in complete remission!!! I want to be able to hike Mt. St. Helens and go backpacking again. I want to run another half marathon, perhaps even train for a full marathon.
Asacol 4800mg /day for 2 months: Did not work for me at all
Prednisone: 30mg /day for 1.5 months: Not really working, but currently used as a buffer until Remicade kicks in.
Remicade: 1st infusion 7/2/2012. 2nd infusion 7/15/2012
written by Nicole
submitted in the colitis venting area