I am almost 25 years old; I was diagnosed at 18. Following my diagnosis, I was in denial about my disease and couldn’t afford my meds. Thankfully, I had mild symptoms and functioned fairly normally until I went downhill and the end result was a 5 day stay in a hospital. I had lost 10lbs in water alone and couldn’t stop shivering between the anemia and extreme lower back pain. I came out in recovery/remission and restarted my life. Fast forward some years and I have been switched to Azathioprine and probiotics (of my own initiative). I live with my accepting, loving boyfriend and my beautiful 12 week old boston terrier. I work as a cook at an upscale retirement community and I am loving life when I’m not in pain.
Some more about me:
I’m a cook by trade, but a pastry cook by hobby. As a result of going gluten free, I have taught myself how to bake gluten free. I make birthday cakes for people I love :)
I have a fair amount of pain around bowel movements; watery poo/diarrhea are a constant and blood and mucus are ever present. Depending on the day, I use the bathroom upwards of 10 times after which, of course, my abdominal area is sore and it can be painful to stand. I usually require at least a nap a day and I have to stop for bathroom breaks anytime I try to workout.
About 2.5 months ago, I had just started my new job and was in remission; I was feeling pretty great. I had an opportunity to have a nutrition test at a naturopath at a reduced price, and because it was non-invasive, I figured “why not?”. While there, they recommended that I try some homeopathic remedies and again I figured “I’m in remission, why not?”. The very next day I was sick. I’m taking the same medications as before, but I can’t seem to shake this flare; its effecting how I work and I’m so tired of using the bathroom so often and at inconvenient times. Any recommendations for getting back into remission?
UC has caused me to look at life differently. One of the weirdest things to me is how little people know about it – if they know at all. Even when I try to explain, people don’t seem to comprehend what it’s like. They understand that I have to use the bathroom a lot and when I leave the room, it’s about 95% of the time for the bathroom. I can’t wait to finally get a smart phone so I can finally download the bathroom finder app!
Being a mathematical thinker, this disease has screwed with my head. Logically, there should be some kind of formula for what I should take and what I can/cannot eat; this is not so. I have found mostly what works for me, but this does not seem to necessarily resonate with other people who have Ulcerative Colitis. Because my train of thought has been disrupted, I find that I have developed more of a sense of apathy and a better understanding of chaotic nature. There is no formula for life and the sooner we understand this, the sooner we can move on with our lives.
I passed Asacol whole, Prednisone is awful but works, and Azathioprine makes me feel weak but works for my colitis. Probiotics are amazing!
written by Tiffany
submitted in the colitis venting area