Life with Crohn’s disease

Posted May 07, 2010, at 9:19 p.m.

In almost every way Holly Legere is a typical, high-achieving 17-year-old girl.

She goes to dance class, skis, rock-climbs, maintains good grades at Bangor High School, volunteers in her community, is scoping out colleges and is absolutely over the moon about her first car, a 10-year-old Subaru Outback.

She has many short- and long-term goals and loads of hopes and dreams.

One of the biggest?

Keeping her large intestine for as long as she’s able.

Holly is one of about 1.4 million Americans who have either Crohn’s disease or ulcerative colitis, a chronic inflammatory bowel disease with a variety of symptoms that can cause diarrhea, inflammation of the digestive tract and the formation of ulcers inside the intestines. It also prevents the intestine from absorbing nutrients from food.

About 30,000 new cases of Crohn’s and colitis are diagnosed each year. Most people diagnosed are young, between the ages of 15 and 35. Holly began exhibiting symptoms when she was just 4 years old. She was officially diagnosed in the fifth grade.

While most teenage girls would not consider a discussion involving their own bowel movements, Holly lapses quite easily into conversations about diarrhea, large and small intestines, digestive gases, rectums, colonoscopies and endoscopies.

She’s now taking eight medications a day for Crohn’s, for asthma, which is prevalent in those with Crohn’s, and for acid reflux. She also is getting steroid injections for rheumatoid arthritis, which she recently seems to have developed in her ankle and is also a result of the Crohn’s disease, and was just informed that she is in the beginning stages of osteoporosis, yet another side effect.

She has had a portion of her colon removed, had an ostomy bag for one year and started the new year off by having her gallbladder removed.

“Actually, I could probably have only had the bag for about two months, but the relief [from the pain] while I had it was so incredible that I asked to keep it and ended up having it for a year,” Holly said recently as she sat down to talk about her disease.

Ostomies are sometimes permanent but also can be used temporarily to give intestines time to heal.

“There was a lot of relief with the bag, but we felt it best to eventually reconnect [the intestine] because I’m a bit young to be looking at such a permanent option as the removal of my large intestine, and having the ostomy is really not very pleasant,” she said matter-of-factly.

Holly has had so many surgeries that it’s impossible to recall them all. She has been anesthetized 10 times in just the past two years, her mother, Pam Legere, a Bangor schoolteacher, said this week.

“Tim [Holly’s father and also a Bangor schoolteacher] and I worry so much every time they put her to sleep. It takes so much out of her each time,” she said.

Holly misses a lot of school but keeps up with her schoolwork with the help of tutors.

She’s clearly grateful each day that she gets to go to school with her friends.

Holly also has difficulty maintaining her weight. When she was 15 years old she weighed just 76 pounds.

She posts updates on CarePages, a free website for those who are ill to blog and keep connected with friends and family.

Last March when she gained 4 pounds, Holly wrote, “I officially hit the 5th percentile” on the pediatric growth chart. “That’s great news so I’ll keep eating and growing.”

But small as she may be, Holly is, well, a bit fierce when it comes to causes.

While discussing the intimate details of her troublesome digestive tract may not be a favorite activity, she’s willing to talk anyone’s ear off about it if it will raise awareness of the disease.

She is raising money and support for the annual Crohn’s and colitis walk in Portland on Saturday, May 22. Right now she is the second-highest fundraiser for the walk in Maine.

The money raised by the walk goes to the Crohn’s and Colitis Foundation of America for research to help those who suffer with the disease, and to help find a cure.

When Holly contacted me she asked if maybe the Bangor Daily News might give some publicity to the walk.

“Perhaps we can do so by telling your story,” I suggested, certainly aware that it was a lot to ask of her to share such details of her life.

“Absolutely. No problem,” she replied.

So in case you’re wondering, because Holly’s story may certainly sound a bit grim, she doesn’t spend much time feeling sorry for herself.

She has spent a great deal of time on the Barbara Bush Ward at Maine Medical Center in Portland and, as she puts it, “I’ve seen much worse than a bad case of Crohn’s.”

Here are just a couple of snippets from her blog on CarePages that probably can do a lot more than this column can to demonstrate who Holly Legere is:

“I wish everything could just be over with and I could just get on with living a teenager’s life; But it looks like God has something else in store for me …

“I am so thankful for those [pediatric gastroenterologists] I have had that I hope I can do the same for patients when I am an adult …

“So let’s hope this cycle ends — sooner than later and I just get through my Junior year of high school.”

As she was headed yet again to Maine Medical Center for another round of tests and treatment, she blogged that as much as she dreaded it, she also was excited to see the nurses there.

“They make me feel safe,” she wrote.

Holly has a lot of goals. Not losing her large intestine anytime soon is one. Becoming a pediatric gastroenterologist is another.

Trust me. She’ll be a great one.

To donate to Holly’s team go to http://online.ccfa.org/goto/team_holly.

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