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Carly Medosch (right) suffers from Crohn's disease, an inflammatory bowel condition that can wreak havoc on patients' daily lives. Medosch relies on her mom, Mary Jo, for help getting the care she needs when her symptoms flare up. Crohn's can cause severe digestive distress. |
In so many ways, Carly Medosch looks and acts like a normal 28-year-old professional woman. She talks about the MBA classes she is taking, and laughs and jokes with those around her about the crazier parts of her day.
But that normal exterior is sometimes a liability.
Like when police question her suspiciously when she uses her handicapped parking permit to access needed facilities in times of emergency.
Or when she has to explain to friends or co-workers why she has had to take time off when she doesn't look or act ill.
Medosch has been living with Crohn's disease since she was 13.
Crohn's is an inflammatory bowel disease that can cause pain, inflammation and blockage of the intestines and other parts of the digestive tract.
It can force patients to re-examine every aspect of how they live their daily lives.
"You get really good at having a really high tolerance for pain," Medosch said.
And because its symptoms aren't the most fun thing to bring up in a normal conversation, and there aren't many outward signs of the illness, it can be hard for patients to explain to those around them why they're making frequent trips to the bathroom, to the doctor's office or to the hospital.
"So many people just haven't heard of Crohn's or colitis," Medosch said.
SUFFERING IN SILENCE
According to the Crohn's and Colitis Foundation of America, about 30,000 new cases of Crohn's and colitis are diagnosed each year, mostly in people between the ages of 15 and 35.
There is no cure for Crohn's disease, and the severity of symptoms can vary greatly among those who have it.
Symptoms include persistent diarrhea, abdominal pain, fever, extreme fatigue and loss of appetite. Children with Crohn's can suffer delayed physical growth--one of the signs that prompted Medosch's mother to begin asking the questions that led to Carly's diagnosis.
Crohn's symptoms are similar to those of ulcerative colitis, another inflammatory bowel disease that attacks the colon.
UNPREDICTABLE BOUTS
Since being diagnosed in middle school with Crohn's--whose symptoms, Medosch says, are "probably the least socially acceptable thing you could think of"-- Medosch has had many surgeries, including the removal of 5 feet of her small intestine.
She squeezes every ounce of energy she can out of the days when she feels decent, but she never knows when a week of sickness and repeated trips to the hospital and doctor might interrupt her work as a graphic designer.
"I've had it for 15 years, and I can't even tell you how I'm going to feel tomorrow," she said.
When she's driving, she stays keenly aware of where the closest public restroom can be found. That's why she needs the handicapped permit.
Because of her disease and her shortened intestines, she suffers frequent bouts of diarrhea, sometimes as often as 15 times a day. She does not travel without a change of clothes and some basic supplies.
Medosch feels fortunate to have support from her parents, especially her mother, Mary Jo Medosch, who drives her to doctors' offices and the hospital when needed. She also helps Carly make calls and write letters to insurers and health care providers to try to get the care she needs when she doesn't have the energy.
But not everyone has that kind of support, and that's why Medosch and her mother have put a lot of time into rebuilding the Fredericksburg chapter of the Crohn's disease and ulcerative colitis support group.
PEOPLE WHO UNDERSTAND
The group meets on the second Tuesday of each month from 6 to 7 p.m. at Mary Washington Hospital. It is run through the Crohn's and Colitis Foundation of America.
Since Crohn's and colitis affect individuals in different ways, patients can't expect to move through a uniform, mapped-out treatment process.
"It's not like you go to the doctor and they say, 'Here's your initiation kit,'" Medosch jokes.
For that reason, support groups can be particularly helpful.
Laura Wingate, director of outpatient and professional programs for the Crohn's and Colitis Foundation of America, said the organization aims to keep its support groups focused on helping people with Crohn's and colitis find ways to live their lives the way they want.
"We really want them to be in an empowering environment where individuals walk away with tools and techniques and ideas for enhancing their lives," Wingate said. "We encourage people to come to the group when they're in need, but also to come when they're feeling well and to share what they did to help feel better."
Wingate said group discussions cover a wide range of topics, from travel to going out to eat to helping young people talk to their friends about the disease.
Medosch said it's been rewarding for her to connect with other people who are going through the same problems she is.
"For some of these people, they have never spoken to someone who understands what they're saying," Medosch said. "It's such a relief to go somewhere and have people who understand."
Emily Battle: 540/374-5413
Email: ebattle@freelancestar.com
