Courtney’s struggle with Ulcerative Colitis

You know I’m training for a half marathon. You know I’m raising money for the Crohn’s and Colitis Foundation of America. But do you know anything about Crohn’s or Colitis?

Meet my new friend, Courtney (second from the right above).  She was diagnosed with ulcerative colitis in 2006. She is one of my Team Challenge teammates. I asked her to share her story with all of you.

Please take the time to read about Courtney’s journey with colitis. If you are so inclined, please consider donating to the CCFA. You can make a difference, no matter what the size of your donation is.

I was diagnosed with ulcerative colitis in August 2006. I didn’t think too much of it at the time. What most concerned me was that my doctor said many people have to learn to make dietary changes, and he mentioned cheese as something some patients had to limit. I was appalled – “You mean even like cheese on tacos?!?” was my reply. I clearly had no clue what I was in for.

I maintained on my medications relatively symptom free until January 2008. Right at the start of spring semester, I went through a very serious flare up that eventually landed me in the hospital. I opted to go to a hospital in Kenosha near my family and the GI doctor I had been seeing. I was in the hospital for 10 days, and left in even worse condition having contracted a C Difficile infection on top of the UC flare. I saw my doctor a few times on an outpatient basis and he insisted I was getting better but it would be a “long road.” He was wrong.

At this point, I was barely able to walk (partially due to abdominal pain and partially due to my enormously swollen feet and ankles from the prednisone). I was taking around 25 different pills a day,
and I had dropped from a healthy 130 to 103 pounds. I had been unable to attend school or work for over a month. My father was getting frustrated and urged me to get a second opinion. He brought me
to Froedtert.

I will never forget the look on the GI doctor’s face when he saw me. He went completely white. I didn’t
see him again because when I came back from my X-Ray I was greeted by the surgical team. It was the
scariest moment of my life. Everyone who has UC knows that surgery is a possibility (and everyone who
has UC also knows this means ostomy, perhaps the scariest word in the English vocabulary to a 23 year
old female). I began to cry.

Little did I know, this doctor who was making me so angry was really just trying to save my life. He told
me I had toxic megacolon, and I needed emergency surgery to remove my colon. However, they needed
to get me hydrated and give me a blood transfusion before they could do the surgery, otherwise they
weren’t sure if I would make it. They scheduled me for the 8am slot the next day. Nobody wanted to
tell me at that point, but I was basically knocking on death’s door – had I waited much longer my colon
would have eventually burst and fatality was a real danger. I found out afterwards that I may have been
in the worst condition anyone there had ever seen.

Surgery for me gave me a new life. Yes, it was a long tough road, but I felt immediately better. Adjusting to life with an ostomy was hard at first (mentally and physically). Because I had been in particularly horrible condition, the construction of my jpouch had to be broken up into three surgeries over a 9 month period. I also tended to be a patient plagued with unexpected complications. Even today, I have to be on maintenance medications to treat recurrent pouchitis which my doctors think may be a by-product of the C Diff infections.

However, the ordeal has made me stronger. I am proud to say that even though the most difficult part of my illness occurred while I was in school I was able to stay on track with my program and graduate with my Master’s degree in Educational Psychology in May 2009. Despite small adjustments you have to make for living with a jpouch and pesky pouchitis flares (which, honestly, you may as well just have ulcerative colitis), I feel like myself again. I still have challenging days here and there, and I never know what the future will bring but, given all I’ve already been through, I do feel like I can handle just about anything. For me, this ½ marathon is extremely personal, and will make me feel like I have finally conquered the disease that kept me down for so long.

What is a j-pouch you ask?

A j-pouch is a surgical procedure that eliminates the need for an ostomy (external pouch) for patients
who’ve had their colon removed due to ulcerative colitis. When the colon is removed, the rectum is also
taken out because it is typically diseased as well. The surgeon then constructs a new “rectum” out of
the patient’s small intestine.

The surgery can be performed in two or three steps, depending on the health of the patient, and a
temporary ileostomy is necessary until the new plumbing is healed enough to operate. After the
operation, “j-pouchers” are able to pass stool through the *ehem*” usual route,” but because they lack
a colon, they have to use the restroom much more frequently than other people. In addition, there are
new dietary restrictions – generally, people with a j-pouch would want to avoid veggies and other high
fiber food as they take longer to digest, and well…. Let’s face it, we just don’t have as long as the rest of
you ;).

If Courtney can train to run a half marathon after all she’s been through, I can run a half marathon, too. Hell, we can ALL help out by giving generously.

Please help me raise $1283 in the next 9 days. Visit http://tinyurl.com/vegas10 to make your tax-deductible donation today. Can you spare $10?

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