Kelly's StoryPatient Story
According to Kelly, almost every part of her body is impacted by her diseases – skin, gastrointestinal tract, sympathetic nervous system, musculoskeletal system, bones, and more. The worst of her pain occurs in her joints and gut.
“Even when I’m feeling well, I’m in some sort of pain,” Kelly said. “My gut pain causes my sleep to be interrupted every night. I’m lucky if I get three hours of sleep a night.”
Fifty to 70 percent of patients seeking medical care for initial diagnosis or exacerbation of IBD symptoms cite abdominal pain as one of their primary symptoms. For Kelly, that pain may be caused by general disease activity along with complications such as bowel obstructions, ulcers in her esophagus, pancreatitis, and more. Out of her gut, she battles pain caused by arthritis, fusing of her bones, eye inflammation, ulcers in her nose and mouth, and osteoporosis, along with mental anguish and negative feelings caused by having an invisible illness. Treatment of her pain isn’t simple.
“You may be able to see my glassy, inflamed eyes with bags underneath, but no one knows the struggle my insides are putting me through,” Kelly said. “My own doctors and nurses often don’t understand the excruciating pain that comes with being a patient living with multiple autoimmune diseases, trapped inside a body in which your cells attack your entire body. If we can’t get providers to understand and recognize the seriousness of our pain, who will?”
To cope with her pain, Kelly has tried everything – pain medication, acupuncture, yoga, exercise, meditation, and other complementary and alternative medications. While they have provided some relief, she still finds herself battling the pain chronically.
Despite the debilitating pain she lives with daily, Kelly has mustered the strength to complete two half-marathons with Team Challenge, educate herself, and become an advocate for others living with Crohn’s disease, ulcerative colitis, and other illnesses. For nearly four years, Kelly has used the Charity Miles app to log her exercise activity and give back to charity. This past year, she was asked to be an Ambassador for Charity Miles, using her experience to motivate others to download the app and become active despite pain and illness.
However, the hardest thing about living with the pain caused by her diseases is when it prevents her from being able to run. “That’s what hurts me the most,” Kelly said.
To others coping with the pain caused by inflammatory bowel diseases or other illnesses, Kelly encourages others to maintain good communication with your gastroenterologist and other members of your medical team, don’t be afraid to seek a second opinion if you aren’t happy with what your doctor is recommending, and seek out support from other patients, friends, and family members.
“I share my story in hopes that my future will include more support and give others the courage to tell someone, ‘I’m struggling too.’ Sometimes we just need people to simply be there, not analyzing our every move, not picking us apart. We need you just to be here, be with us, even in silence, to just feel…visible,” Kelly said.