For more than two years, Brooke Abbott, who was 19 at the time, suffered from severe fatigue. As time went on, Abbott experienced a series of unexplainable conditions, such as bowel urgency, simultaneous urination and bowel movements, painful bowel movements, night sweats, bloody stools and unexplained weight and hair loss.
While working on a TV show, she was constantly going to the bathroom and it seemed to her colleagues that she was doing a disappearing act.
“Most of the people around me thought I was a frivolous 20 something year old, who was smart but had no drive or ambition,” Abbott said. “I appeared lazy and inept.”
Her condition worsened and for four years she was going to the bathroom 12 times a day.
“It was always painful to a point that I felt faint and very weak after each trip to the bathroom,” Abbott said.
When she finally passed out on the production set, it got her attention to seek medical help. Her mother called a gastroenterologist. When Abbott shared her symptoms with the doctor, he suggested it was either irritable bowel syndrome or inflammatory bowel disease.
What’s the difference? Irritable bowel syndrome is a functional gastrointestinal disorder. It is a group of symptoms, not a disease and is less serious than inflammatory bowel disease.
Inflammatory bowel disease is a term used to describe disorders that involve chronic inflammation of the digestive tract: ulcerative colitis, a condition causing inflammation and ulcers in the lining of the large intestine (colon) and rectum; and Crohn’s disease, an inflammation of the lining of your digestive tract that can spread to other tissues.
The disease was first identified in 1932 by Dr. Burrill B. Crohn and colleagues Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer. The chronic condition was named after Dr. Crohn.
More than 780,000 Americans are affected by Crohn’s disease. Crohn’s disease is misunderstood and the cause is not certain; however, current research suggests hereditary, genetics, and/or environmental factors contribute to Crohn’s disease. Hearing that this could be the root of her problem was unbelievable to Abbott. There was no family history of irritable bowel syndrome or inflammatory bowel disease.
“My dad has psoriasis, his mother had lupus, my maternal grandmother and great-grandmother had rheumatoid arthritis,” Abbott said. “Autoimmune disorder markers existed in my family.”
To diagnose her medical condition, Abbott’s doctor ordered a colonoscopy and blood work.
Abbott was diagnosed with left-side ulcerative colitis. Researchers report that ulcerative colitis may affect as many as 907,000 Americans.
Hearing this news at the age of 24, she ignored it.
“I was prescribed a low form of therapy and it seemed to be working,” she said. She did not immediately research the disease.
“It’s important for people to understand that every inflammatory bowel disease patient’s journey is unique,” said Michael Osso, president and CEO of the Crohn’s & Colitis Foundation. “That is why sharing patient stories is so important. It helps show just how debilitating and varied these diseases can be, and how we need the support of everyone — in and out of the IBD community — in order to unite to care and cure Crohn’s and colitis.”
According to the Crohn’s & Colitis Foundation, men and women are equally likely to be affected, and while the disease can occur at any age, Crohn’s is more prevalent among adolescents and young adults between the ages of 15 and 35. The disease is most common among people of eastern European backgrounds, including Jews of European descent. However, the numbers of cases are increasing among African-American populations.
Abbott has a Creole heritage with roots in Louisiana. In response to her disease, she changed her eating habits from rich in fat southern cooking to cleaner foods, took the prescribed medication and was in remission for about a year.
While she was under medical supervision and coping with her disease, she was dating and in a serious relationship.
“I did not have too much information about it and only shared what I knew with my boyfriend,” she said.
At 25, she became pregnant with her first child. The good news was the chances of her passing ulcerative colitis to her baby was very small — between 2 to 5 percent.
The bad news was the pregnancy caused her inflammatory bowel disease to become very aggressive from joint problems, weight loss, hair falling out, arthritis, to a form of pink eye. In 2009, she gave birth to a healthy boy, Jackson.
“It was difficult for me to change my son’s diaper,” said Abbott, who still suffered from extreme pain due to inflammatory bowel disease. “It was a very low moment because of my inability to be an adequate mother, spouse and employee.”
Three years later, her disease worsened and Abbott was admitted to the emergency room. She is 5-4 and weighed only 98 pounds. “My colon was completely removed,” she said. “At first, I had to adjust to wearing a pouch outside of my body.”
Eventually, she was fitted with a J-pouch which is inside the body.”
The surgery is not a cure. She gets a chronic infection in her pouch frequently.
Her husband, Steve, was unable to cope with the changes and her condition a few years after the birth of their son.
“He didn’t understand why I was not getting any better,” Abbott said. “He felt if I am eating healthy, taking medication and my colon was removed, why was I still sick.”
Her husband did not understand how serious the disease is and how it affects the family. They now co-parent their son.
Jackson, who is 8, is his mother’s biggest advocate.
“When he was 2 years old, I talked to him about what I was going through,” Abbott said. “I showed him my ostomy, which is an internal pouch.” Her son assists with changing her pouch.
At 4 years old, he asked his mother to write a letter to Vice President Joe Biden about how Crohn’s and colitis affects his life. He became a pen pal with Sen. Barbara Boxer.
There are between 725,000 and one million people, including babies, kids and adults, living with an ostomy in the U.S. Nearly 100,000 ostomy surgeries are performed annually in the United States.
Other sufferers of this chronic disease are TV personality and chef Sunny Anderson, who is living with inflammatory bowel disease for about 20 years, specifically, ulcerative colitis; and Larry Nance Jr. of the Los Angeles Lakers, who was diagnosed with Crohn’s disease at 16.
New Orleans Saints linebacker Michael Mauti was diagnosed with ulcerative colitis during his senior year at Penn State. They are all advocates.
There are a few African Americans who are not public figures who stand with Abbott, Gaylyn Henderson, Shawn Bethea who are faces of inflammatory bowel disease.
“I advocate because I did not know any moms who had IBD, so I started writing a blog,” Abbott said. “This is a disease that is silently killing the African-American community so I speak at churches, advisory boards for pharmaceutical companies, public policy forums and other platforms to educate people about IBD and being eligible for disability benefits.”
Abbott is on full disability and uses her experiences to educate others and affect change for IBD sufferers.
“I believe that this disease took me from the entertainment industry, but put me on the path of helping others live with IBD and fight for change,” Abbott said. “I am a stay-at-home mom because of IBD but I am grateful for the closeness to my son, his father and my entire family. It hasn’t been easy but I found a whole community of people who are going through the same thing and we support each other.”
Since 2011, Crohn’s & Colitis Awareness Month is observed in December. It was designated by the U.S. Senate Resolution 199 to educate others for better understanding and to strengthen the fight to find cures for Crohn’s and ulcerative colitis.
Next April, Abbott will have lived without a colon for six years. She gets a biologic infusion every month and takes a daily oral medication.
Brooke Abbott – www.crazycreolemommy.com
Chronically Strong – www.chronicallystrong.com
Crohn’s Disease – www.CrohnsDisease.com
Everyday Health – www.everydayhealth.com
Gutless and Glamorous – www.gutlessandglamorous.org
IBD Social Circle – www.facebook.com/IBDSocialCircle/
Mayo Clinic – www.mayoclinic.org
The Crohn’s & Colitis Foundation – www.crohnscolitisfoundation.org
United Ostomy Associations of America – www.ostomy.org
Vegan Ostomy – www.VeganOstomy.com
Marie Y. Lemelle, MBA, a public relations consultant, is the owner of Platinum Star PR and can be reached on Twitter @PlatinumStar or Instagram @PlatinumStarPR. Send “Health Matters” related questions to firstname.lastname@example.org and look for her column in The Wave.