How I Got My Ulcerative Colitis Under Control
Leigh Stein, 33, was diagnosed with ulcerative colitis when she was 23 years old. The diagnosis was overwhelming and couldn’t have come at a worse time. Feeling sick and weighed down with graduate school finals, Stein, who lives in Pittsburgh, eventually landed in the hospital. Slowly she found the right medication and lifestyle changes to get the disease under control. Back on her feet and in remission, she now gives back, volunteering for the Crohn’s and Colitis Foundation of America (CCFA). For Stein, reaching out to others is healthy and healing, as is running half-marathons and taking part in other fundraisers for ulcerative colitis research.
I was diagnosed with ulcerative colitis in 1999. I was in graduate school when I began feeling sick. I was losing weight, and all of a sudden food did not agree with me. I was constantly running to the bathroom—sometimes 20 to 25 times a day.
I knew I needed help so I went to see a gastroenterologist. When my gastroenterologist figured out what was going on, he wanted to admit me to the hospital as soon as possible. I explained that I wanted to finish my last semester of graduate school and that finals were less than one week away. I struggled through finals week and as soon as I finished my last one, I was admitted to the hospital the next day. I dont think I realized how sick I was.
After my initial admission, I was in and out of the hospital and was on and off prednisone for a few years. Unfortunately I had some bad reactions to the first medications that I was given, but I began to improve. Presently there is no specific cause of ulcerative colitis, but there are many things that can trigger a flare-up. Stress played a part in aggravating my symptoms while I was in graduate school.
I had to make some major lifestyle changes. I learned to have a plan and be prepared; now I always know where the bathrooms are when I go out. My doctor told me that I actually have a relatively mild version of ulcerative colitis. I had no idea how bad this disease could be. Even with a mild case, I had to use the bathroom dozens of times a day before I got the disease under control.
I take medication every day
I have been in remission for about eight years. I have a flare-up here and there, but nothing like the symptoms I had immediately before and after being diagnosed. A flare-up can occur at anytime out of the blue. I can feel fine one minute and then realize my stomach has a mind of its own and I have to run to the bathroom.
Prior to my last episode, I had my gallbladder removed. The doctors said it was so inflamed that they couldnt do the minimally invasive surgery and I had to have the more invasive type of surgery in which they open up your abdomen. The good news is that I found that my ulcerative colitis really improved after the surgery.
My ulcerative colitis is now under control with the help of 10 pills I take daily, as well as changes in my diet. I watch what I eat and go to the gastroenterologist every six months. I am active and healthy and I know much more about the things that trigger ulcerative colitis flare-ups, and how to avoid them.
It all works together; I know how food affects me, Im really good about taking my medicine, I exercise and get a good nights sleep. It sounds healthy, but its a lifestyle thats necessary, not optional.
I have to admit though that Im not happy about having to take medication indefinitely. Every six months when I go to the doctor, I ask if I can stop taking them; he says no. He reminds me how sick I was and how the medications are helping to keep me healthy. Medications are really just part of my life now. I take them with breakfast, lunch, and dinner.
The Crohns and Colitis Foundation of America has been a rock-solid source of support for me since I was diagnosed. I have volunteered at the overnight camp for kids with Crohns disease and ulcerative colitis, as well as a number of events that occur throughout the year. Most recently I have been active in events that help raise money and awareness for Crohns disease and ulcerative colitis.
Now I raise funds for research
I am open about having ulcerative colitis and I do think that with greater awareness, people feel free to talk about this condition more than they have in the past. It is not something thats easy or fun to discuss, but I think it helps to be open and honest.
Nowadays I focus on spreading greater awareness about Crohns disease and ulcerative colitis and work on fundraising to find a cure for these two devastating conditions. In February 2008, I committed to participate in the Crohns and Colitis Foundation of Americas 16-week endurance-training program called Team Challenge.
Team Challenge allows participants to raise money and awareness, as well as train to walk or run a half-marathon. The Team Challenge half-marathon (13.1 miles) is a great way to get the word out. Each participant has a minimum fundraising goal to achieve. At first I was very nervous about the fundraising aspect of the program. I was not sure how I was going to reach my minimum goal of $3,800. However, within 3 1/2 weeks I surpassed my minimum, raising almost $8,500 for my first Team Challenge in Napa Valley, Calif.
To get started, I sent letters to everyone I knew and explained my condition. A lot of people knew I had ulcerative colitis when I was hospitalized, but a lot of others didnt.
Team Challenge was an amazing experience and I decided after successfully fundraising and walking 13.1 miles in Napa that I wanted to participate in Team Challenge–Kona Hawaii, which was in June 2009. My fundraising goal this time was $10,000. Again I solicited family and friends and this time I included businesses and restaurants. I also had a few fundraisers, including a pancake breakfast at a local restaurant and an event at a local bar. I raised more than $12,000 while successfully completing the half-marathon as a run/walk.
Now, Im a national mentor and I just returned from my third Team Challenge event in Las Vegas. I didnt want to ask my family and friends for financial support because it was so close to Team Challenge–Kona, so I decided to go to Wal-Mart.
I stood in front of the store with a can (with Wal-Marts permission). It turned out to be a wonderful experience. I met so many people who either had ulcerative colitis or shared information about the condition. One girl who had just been diagnosed with ulcerative colitis told me her whole story and cried. I got her email address and later sent her information to the CCFA. She said she was amazed that a complete stranger would reach out to her. She had been so sick; she hadnt wanted to leave her house the day we talked.
I think Im helping to make a difference. Ulcerative colitis has altered my life and I want others to know they can reach out and find great support systems like the CCFA.