Living With Crohn’s: Young CCFA hero speaks out about colitis - The Explorer: News

Living With Crohn’s: Young CCFA hero speaks out about colitis

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Posted: Wednesday, September 18, 2013 4:00 am | Updated: 3:50 pm, Tue Sep 24, 2013.

Some heroes are just born with it.

That’s the case with 15-year-old Rachel Levy, who, if asked how ulcerative colitis has changed her life, might shrug, unsure how to answer. 

That’s because the University High School sophomore, who was diagnosed with ulcerative colitis at age four (but whose symptoms predate that), doesn’t know what it’s like to live without the inflammatory bowel disease.

Levy was diagnosed far earlier into life than the average person who will fall victim to the disease – a disease she has lived with for the past 11 years. 

In fact, Levy’s circumstances were so rare that pediatricians initially misdiagnosed her condition.

Levy’s mother Nanci, who was diagnosed with colitis in her 20s, recalls the uncertainties that came with Rachel’s early symptoms.

“He (her pediatrician) didn’t even imagine someone so young could be diagnosed, but then things started getting worse, we went and saw Dr. Ghishan, her gastroenterologist, who thought it was colitis. We were really surprised,” she said.

Despite her early diagnosis, Levy recalls those symptoms, all of which she still experiences today, though less often.

Like Crohn’s disease, a closely related inflammatory bowel disease, ulcerative colitis is a chronic autoimmune disease.

In colitis, the lining of the colon becomes inflamed and develops open sores, or ulcers, that produce pus and mucous. The combination of inflammation and ulceration can cause abdominal discomfort and frequent emptying of the colon.

The cause of colitis is unknown, though research suggests it is the result of the body’s immune system abnormally attacking food, bacteria, and other materials that pass through the intestines, mistaking such things as a foreign or invading substance.

Though the symptoms of Crohn’s and colitis are often identical, colitis differentiates from Crohn’s in that it is limited to affecting only the lining of the colon, while Crohn’s disease can affect any part and all layers of a victim’s gastrointestinal tract.

In the worst cases, ulcerative colitis can cause excessive bleeding and require surgery in which the colon is removed. 

Levy has not had to undergo surgery. In fact, she has learned to manage the disease in a fashion that has reduced flare-ups to about once per year.

That’s not to say the disease hasn’t taken its toll at times in the past, as Levy has been hospitalized twice from the disease for severe symptoms. 

Overall though, when comparing herself to others, Levy feels fortunate because she’s had so much practice with the disease.

“I feel like it’s easier for me than most people, because I’ve been on a diet and taking medications and doing the whole routine for 11 years,” said Levy.

During that time fighting colitis, Levy has grown used to that routine. She takes three medications per day. She takes her own meals with her everywhere she goes. Stress, and oddly vacations, seems to trigger flare-ups. Her diet excludes all dairy and limits gluten.

Athletics are sometimes limited.

Though most would look at an 11-year sentence with ulcerative colitis as a punishment, Levy uses it to her advantage, and the advantage of others. 

For the past eight summers, she has been a positive leader and advocate for colitis awareness at camps in California and Colorado, and she participates in the annual walks hosted by the Crohn’s and Colitis Foundation of America. 

“Every year since I’ve been attending camp with kids who have had to go through some of the same things as me, I’ve gained strength,” said Levy. “I’ve made friends to last a lifetime and having colitis doesn’t really get me down that much anymore.”

Levy’s continued involvement, ability to speak openly about the disease, and willingness to help others through colitis led Levy to recently be named the Crohn’s and Colitis Foundation of America’s Honorary Hero.

Still, Levy remains humble.

“I don’t flaunt it because nobody really knows what it means. It’s a quiet dignity to say I’m the Crohn’s and Colitis hero,” said Levy.

For those who may have been recently diagnosed or continue to fight the disease, Levy has some key advice.

“Hang in there,” she said. “For all the struggle you’re going to go through, you’ll have your entire life to be okay with it. In a lot of cases it fades out or you outgrow it, so it’s not necessarily permanent. It’s not going to be terrible for the rest of your life. Just hang in there.”

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Welcome to the discussion.

1 comment:

  • MichaelH posted at 12:43 pm on Thu, Sep 19, 2013.

    MichaelH Posts: 1

    I applaud Rachel for speaking out. I was diagnosed with Ulcerative Colitis just before my 21st birthday in 1999 although my bowel habits had never really been normal, frequent diarrhea and gas among other things for my whole life. In retrospect I think frequent treatment with antibiotics as an infant played a major role.

    In 2011 after all other treatment options had largely failed I was facing surgery to remove my colon. Fortunately a few days before my surgery date I found out that Fecal Transplants had been effectively used to treat Ulcerative Colitis from an article by Dr Thomas Borody "Treatment of Ulcerative Colitis using Fecal Bacteriotherapy" which documented 6 patients whose symptoms appeared to be sent into permanent remission.

    After struggling to find doctors who would do the whole process I ended up doing it myself in June / July 2011 in combination with some medications. It worked and I have been symptom-free for over 2 years now without needing to take any medications to maintain this remission or what I consider to be a permanent cure after 12 years of medications proved to be ineffective at sustaining remission. For more info about my experience go to my website: http://www.FecalTransplant.org

     

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