Shannon Ingle, a Crohn’s Disease (CD) patient, has begun to write a testimonial book on the disease to raise people’s awareness of its symptoms and their understanding of CD patients’ limitations, hoping to ease the sense of shame and failure some patients experience.
The project, which was recently reported by Aline Carambat from the Daily Comet, notes that Ingle is currently gathering several testimonies from other patients, seeking to collect as many as she can “from anyone who wants to speak out,” she said. “I want to know all of it, even the most embarrassing parts.”
This embarrassment is caused by some of the Crohn’s Disease symptoms, which may involve diarrhea and irritable bowel movements, usually uncontrollable and likely to cause accidents, a situation experienced personally by Ingle herself. “It has happened to me, and while embarrassing to say out loud, it is something that I cannot control,” she said.
Her story and the stories of the patients from the support group she established in her hometown of Houma were her source of inspiration for the new project. “This is not just me. This is real and we need support,” she said.
Crohn’s Disease is an inflammatory and chronic condition of the intestine, and the people who suffer from it struggle with digestion problems, difficulties in absorbing nutrients, and disruption in eliminating waste.
As for the symptoms, they can vary by patient and, besides diarrhea and irritable bowel movements, the most recurrent symptom can be weight loss, extreme fatigue, stomach pain, and a weakened immune system.
The cause of Crohn’s Disease remains undetermined, and in Ingle’s case, for example, it wasn’t easy to reach a diagnosis. She lived in pain for years, since age 9, but the diagnosis was not officially made until her adulthood. “My father had ulcers and stomach issues, so I just figured I was like him,” she explained.
But as she grew up, she realized she wasn’t like other girls. She was very small, didn’t have breasts, and her bone development was similar to a 12 year old. At 21, when she became a mother, she got sicker than ever, and her weight dropped abnormally. She found out she had six strictures, narrowed intestine, and she underwent surgery to remove them.
The symptoms of severe Crohn’s Disease remained even after the procedure, complicating her relationships and her career, something that affects many Crohn’s Disease patients.
The constant visits to the bathroom, the pain, and the extreme fatigue prevent an active life and are beyond many people’s understanding, Ingle exemplified, even close ones.
“Not having the energy to get off the couch or out of bed is interpreted as lazy. Not being able to run around like other parents with our children is interpreted as being a bad parent, and not being able to hold down a job is interpreted as a lack of worth ethic.”
To support the publishing of her book, Ingle created a “Go Fund Me” page here: http://www.gofundme.com/bpy63w.