By Matt Nestor
As Tom Meersman lay in his hospital room following a second surgery that would help end his battle with ulcerative colitis, he noticed his mother smiling.
His mother, Roxanne, had been with him through his entire 18-month oddessy with the disease that saw him lose his colon and his rectum. At that moment, he knew exactly what he wanted to do.
“I always wanted to write a book, and now I had the perfect opportunity to,” Meersman said. “I wanted to do it for my mom. I can’t think of anything more special and more rewarding I could do than to write a book and dedicate it to her.”
That is exactly what he did, writing the book Hell’s Toilet (Bookstand Publishing), which chronicles his battle with ulcerative colitis and eventual recovery from the disease.
Ulcerative colitis is a type of inflammatory bowel disease that affects the colon and rectum. It causes inflammation and ulcers in and around the colon, and is most often diagnosed before the age of 30.
Once contracted, the immune system will attempt to fight the disease, but it is actually doing more harm than good. In attacking the sores, it is actually attacking the colon and hurting its ability to function.
It is not exactly known what causes it at this time. It is not contagious, and there are no known causes to getting the disease.
For Meersman, he had always been healthy. Other than the occasional cold, he said he was never one to get sick.
but overnight, symptoms showed up, and he wasn’t sure what to do.
“I lived carefree and didn’t think I would ever get sick,” he said. “I was feeling fine, and then the next day, I wake up and realized I wasn’t feeling well.”
He said it immediately affected his quality of life. Whereas he used to go out and have fun, he now couldn’t leave his own home.
“First thing is you go to the bathroom a lot more, and the big thing was, I was on the couch all the time,” he said. “You have absolutely no energy, you’re going to the bathroom 30 times a day. There is no relief.”
After waiting a month to see his primary care physician, he was referred to a specialist, who diagnosed the disease through a colonoscopy.
The first treatment for the disease is medicine, and Meersman was put on the steroid prednisone. He said while that gave him some mild relief at first, that ultimately made things worse.
“Prednisone is the worst drug I have ever been on,” he said. “It made me fat, it made me break out, it made me lose sleep, and it made me irritable. I basically left the doctor’s office thinking we know what it is and it’s over now. Two days later, I ended up getting worse, and I was in the hospital.”
Many more treatments were tried over the next several months with assorted drugs, all to no avail. He and the doctors realized they were out of options, and surgery was needed.
A two-step procedure that took three months was performed. The surgeries removed the colon and the rectum, and tied his small intestine to his sphincter muscles.
Meersman was happy to have the procedure take place. The long months had caused him immense physical and emotional pain, and any relief was welcomed.
“I was so depressed, if I didn’t have family and a support system around me, I had no reason for living,” he said. “I got to the point where I didn’t want to get better for myself, because I didn’t care about myself anymore. I wanted to get better for all the people around me.”
After the second surgery, he felt better almost immediately. Within two weeks, he said he felt back to normal. Now, outside of a few minor dietary changes (no nuts, corn, popcorn or big pieces of lettuce), he said he is back to the way he used to be.
But the book was important. Aside from doing something for his mother, he also realized during the process that not enough information was available about the disease.
“For me personally, it provided closure,” he said. “When I was sick and so depressed, I looked for stuff to read, and there wasn’t anything. I didn’t have a patient testimonial to read. And that made it harder on me because I thought I was the only person going through this.”
But Meersman said in the end, Hell’s Toilet is a happy story, despite all the pain he had to live through.
“I hope people can read this and realize there are other people out there with this, and it does eventually get better,” he said. “There was a point where I thought, ‘Nothing is going to work.’ I was resigned to the fact I was going to be sick the rest of my life. I hope they can see that somebody else went through this and had it bad. And he pulled through and he’s OK now.”
Hell’s Toilet is available on Amazon.com and BarnesandNoble.com. It is also available on the publisher’s Web site. For more information about ulcerative colitis and similar diseases, visit the Crohn’s and Colitis Foundation of America Web site at CCFA.org.
From the October 7-13, 2009 issue