My Story - Our Amazing Daughter’s Battle and Triumph Over IBD
Written by Ken Baum, devoted father of Elise Baum who conquered ulcerative colitis
It’s 7:25 a.m., and the temperature is fifty degrees. Clad in our running shorts and singlets, we huddle like Emperor penguins waiting for the race to start. It’s not supposed to be this cold in Virginia.
I’m surrounded by bucolic vistas and verdant vineyards, but I don’t notice; all I can think of is, “13.1 miles... Will I really be able to run a half-marathon?” I glance over at my daughter, Elise. She’s chatting with our teammates, smiling and laughing, excited and nervous. So beautiful. So happy. Our eyes meet and she flashes me a smile. You wouldn’t think she was about to run 13.1 miles. And you would have never guessed that five years ago she was so sick she couldn’t leave her apartment. I have my answer. I will finish this race. I must.
The gun sounds, we cross the starting line and my heart explodes.
In 2002, Elise was diagnosed with ulcerative colitis (UC), a disease in which the body decides that this thing called a colon is a foreign invader and must be destroyed. UC and its evil cousin, Crohn’s disease, are commonly referred to as inflammatory bowel diseases (IBD). There are two important things to know about IBD: no one knows its cause and no one knows its cure.
Many cases of UC are mild and can be controlled by diet and medication. Such was Elise’s experience for about two years. Eventually, however things got worse. Much worse. Her occasional cramping and abdominal pain became a daily, almost constant occurrence. She started to spot, and then to bleed, so much so that Elise became dangerously anemic and needed several blood transfusions.
Her doctor put her on all sorts of heavy-duty medications. The story was the same each time: The new medication would work for a time, just long enough for her to begin to hope, but eventually the colitis would return and she would be back at square one. In the meantime, the medications were giving her arthritis and destroying her immune system. Consequently, Elise was constantly sick with fevers and infections.
As bad as the physical effects of her disease were, the psychological effects were even worse. Every time Elise left her apartment, she was petrified that she would have an attack while driving or in some place where she could not make it to a restroom in time. This fear dominated her life. She would not go anywhere without knowing the location of every public restroom along the way.
Soon Elise would only leave home to fill prescriptions and go to the doctor. Her disease progressed and eventually her immune system crashed. Elise got sick and could not get better. She had to have a colectomy which is the removal of the entire large intestine which was replaced with an ostomy bag. While this is a major life adjustment, it does “cure” the disease.
Elise grieved for six weeks or so, a dark time where she battled depression and bitterness. After her time of grieving, she emerged strong and intact, praising God and ready for what was next. Elise was truly an inspiration.
Then she started running. A friend at work invited her to run in a 5k race, so she began a training program she found on the Internet called “Couch Potato to 5k.” At first she could not run continuously for a minute, but she stuck with the program and was able to finish the 5k. Elise invited me to start running as well, so we began to run together.
And now, here we are running in the Virginia Wine Country Half Marathon as part of the CCFA’s Team Challenge.
We pass the twelve mile marker; only 1.1 miles to go. It’s difficult and the rolling hills seem larger than they are. But, we are so close to the finish and Elise is so determined. She has worked so hard and this race has come to mean so much more than just an impressive physical achievement, although it is that. For her the race is closure, proof that she has faced her disease and, by God’s grace, she has beaten it.
We round the last turn and can see the finish line. A few yards from the line, I grab her hand, and we finish with our hands held high. She didn’t just beat ulcerative colitis. She kicked its incurable butt!
We caught up with Elise and she is doing great. She is the web manager for large health system, continues to run with Team Challenge, is active in her church, and is beloved “Aunt E” to her eight nieces and nephews. Her health problems are behind her with the exception of rheumatoid arthritis in her knees which she treats with medication and exercise.
“While I do sometimes question why this happened to me, I am so happy to have my life back,” she said. “I feel great and don’t have any restrictions on what I can do. Before the surgery, I was a prisoner. Now I am free.”
Elise is very involved with CCFA raising money through Team Challenge and providing support to patients in need. “It’s nice to be able to support and inspire people who are going through what I went through.”