I was diagnosed with Ulcerative Colitis 20 years ago and the symptoms have progressively gotten worse to the point that I am now considering surgery. I have a colonoscopy or flex sigmoid about once a year. I have recently found the Specific Carbohydrate Diet and I am starting that now.
Some more about me:
I am a 40 year old father of three amazing kids (two adopted) and I work for an organization helping orphans and school children in Haiti. Despite having UC, I love to play golf and travel. I’m from VA but have lived in SC for eight years. My friends and family would say that I love life and adventure, but I always have to run to the bathroom…
Current Colitis Symptoms:
Bleeding, severe cramping, CDiff, no bowel control, joint pain, loss of energy.
Hey y’all! I’m not a blogger and really don’t like to complain but I wanted to offer some of my story in hopes that it helps encourage some of you who may be suffering with the embarrassing symptoms of UC. First of all, PLEASE ask your doctor about CDiff and make sure your doctor does lab work when you are having a flare. I JUST learned about CDiff and wonder how long I have been infected and am getting a new doctor as a result. Here’s my story:
So I’m sitting in the waiting room before a flex sigmoid and I’m grumpy and tired because it’s 1:30 pm and I haven’t had anything to eat or drink. They call my name and at the same time my phone rings. It’s the Mayo Clinic telling me that they just got my lab results and I have an infection called CDiff (clostridium difficile). My local doctor DID NOT catch the CDiff, but I had just started talking to the Mayo Clinic and they did the lab work and advised me NOT to have the flex sigmoid until after clearing the infection. I had never heard of CDiff before and didn’t think it was a big deal. But my girlfriend works in health care and FREAKED OUT because CDiff is very dangerous, contagious, and difficult to get rid of. The ONLY thing that kills it outside of your body is BLEACH. So my doctor didn’t do the procedure and started me on the antibiotic Flagyl. I have been tired and achy for two weeks, but the infection is starting to clear. I still have another month to go on Flagyl to make sure the CDiff is gone.
For the last four months, I have been crapping in my pants uncontrollably. It’s been so embarrassing and I’ve been afraid to leave the house. Almost every morning when I take my kids to school I have to come home and get cleaned up. It only takes 20 minutes to drop off my kids, but I still can’t control my bowel movements. My doctor said it was the UC and I need to have my colon removed. But now I realize that it was the CDIFF and NOT the UC that was making things so bad for me.
The worst incident was playing golf with my best friend when he came to town. On the 14th green, I started cramping. Fortunately, there was a bathroom nearby. I ran to the bathroom only to find BOTH the men’s and women’s rooms LOCKED. By this time, I was standing at the bathroom door totally crapping in my pants and having major diarrhea. I had to tell my best friend to go to the 15th tee while I tried to figure out what to do. I had a roll of toilet paper in my golf bag, so I grabbed that and literally had to stand outside and take my pants off to get cleaned up. It was AWFUL. My friend was understanding and we made it through the last 4 holes but I made sure he didn’t touch me because I didn’t want him to get CDiff too.
I know this is gross, but I just wanted to encourage you to check for CDiff before having surgery or doing anything drastic. Also, if you find yourself in embarrassing and yucky situations — please know that you are not alone and have my support!
Hang in there!
I have taken Imuran and Humira in the past but could not tolerate the side affects. Remicade was the BEST but also produced nasty side affects. Mesalamine does nothing for me. I can’t take sulfa drugs. Currently trying the manage my UC with diet, probiotics, and occasional steroids to control flares.
written by Louis from SC