Not a "Nervous Stomach": Journey to a Crohn's Diagnosis

Breakthrough Crew Ambassador Alison Rothbaum was diagnosed with Crohn’s Disease at 15 years old, at a time when patients only had two treatment options. While most would call being diagnosed with a chronic illness at such a young age unlucky, Alison feels grateful and constantly pays her good fortune forward.

When Alison was a child, people did not speak openly of irritable bowels, nor did they know much information about autoimmune illnesses. For years she was the little girl found in the bathroom complaining that her stomach hurt. It was often written off as a “nervous stomach.”

Her natural spunk and resiliency weren’t dampened by her health challenges. In the 6th grade she made it her goal to achieve perfect attendance. In the 7th grade her goal was to not spend a single day in the nurse's office at school. These are lofty accomplishments for any young person, let alone for someone living with such aggressive symptoms.

For years she was the little girl found in the bathroom complaining that her stomach hurt. It was often written off as a “nervous stomach.”

But in the 8th grade, her symptoms started winning. Nearly every week someone had to drop off Pepto-Bismol and Tylenol to her at school. As  her symptoms persisted, her family grew more worried. They wondered if she might be bulimic, as she was losing weight without any change in her eating habits. When Allison's grandfather passed away later that year, her family and peers then attributed her symptoms to depression.

“I was stuck in the bathroom but I didn’t know what that meant. I didn’t know what a solid poop was. It had been so long and I was living off of Pepto-Bismol.”

The truth behind her symptoms was ironically discovered through a little white lie she told at tennis practice to avoid running. She recalls, “It actually hurt to run, it always hurt, I was never good at it. And then I found out later why.” She went to the bathroom and came back to her coach claiming she had thrown up. The coach sent her home “sick” and the very next day she woke up with a fever.

She was tested her for everything to no avail until a loud growl from her abdomen prompted the doctor to listen to her stomach. He referred her to the Infectious Disease department, where she was diagnosed with Crohn’s disease one month after the initial fever.

With little knowledge about IBD available to her, it could have taken much longer to come to a diagnosis had it not been for that little white lie told at tennis practice. “I was stuck in the bathroom but I didn’t know what that meant. I didn’t know what a solid poop was. It had been so long and I was living off of Pepto-Bismol,” she said.

Alison had no clue how sick she was as a teenager, with no understanding of her symptoms.

Alison HS

Now, Alison feels incredibly lucky to have been diagnosed relatively quickly, and to have found an outstanding doctor. He gave her a notebook the day of her diagnosis that she still has to this day. During each visit he would write down medical terms she would need to know, along with the origin and meaning of those words. He took the time to go over the previous visit's terminology word-for-word, to ensure she understood. In hindsight, Alison understands how lucky she was to have such a caring doctor. As she said, “They don’t do that anymore, everything is on a time crunch.”

Alison grew even more grateful after receiving a phone call from her best friend, also suffering from Crohn’s. In tears over pricy medical bills, he begged for help. She jumped into action, “I always knew I wanted to help people in healthcare in some way.” She began making phone calls to her friend’s doctors, nurses, hospitals, nurse stations, doctors offices, and infusion centers.

It took her six weeks, but she was able to fight his bills down from $200,000 to $1,000. “It took a lot of work, but knowing that I could maneuver around it like that let me know that I had a way of doing this type of thing.”

Grateful for all her help, her friend began referring other patients to Alison. Whether they needed help with pricey bills, understanding what all of their tests meant, or translating “doctor speak”, he referred them to Alison.

“[She] helps them understand what they are about to face,” he recalls.

Alison

This inspired Alison to enter advocacy professionally. She founded Empowering Patients during a time when the idea of a  patient advocate was a brand-new concept, but that is exactly what Alison was doing: advocating and empowering patients. She credits her doctor who spent extra time with her for empowering her with the knowledge to help people.

He gave her a notebook the day of her diagnosis that she still has to this day. During each visit he would write down medical terms she would need to know, along with the origin and meaning of those words. He took time to go over the previous visit's terminology word for word, to ensure she understood.

Alison sees a bright future for Empowering Patients. “Empowering Patients’ tagline is, ‘Advocating to clarify the healthcare world with you.’ I do what my doctor did with me. Past, present, and future, I break down the words so that people can start to understand where they come from and what it means.” She even goes into doctor's appointments with some local patients to bridge the gap between the doctor and the patient so that patients aren’t afraid to talk to their doctor.

Communication is often a huge barrier that prevents patients from getting the proper treatment and successfully managing their illnesses at home. For Alison, who has lived with Crohn’s most of her life, this is a place where she can make a tangible difference. She shares the knowledge that is only gained through experience.

Since founding Empowering Patients, Alison’s advocacy portfolio has grown. She campaigns on social media, spearheading the #HealthcareMatters campaign and the #Save32mil campaign. Alison explains, “Everybody is elevating each other’s voice. Their voice deserves to be heard.”

For Alison, who has lived with Crohn’s most of her life, this is a place where she can make a tangible difference. She shares the knowledge that is only gained through experience.

With many potential changes looming in the US healthcare system, Alison epitomizes what it means to be an activist for the rights of all people. “I don’t choose a side, I choose my community. We’re all in it together. I don’t have the same disease as Molly (a fellow Breakthrough Crew Ambassador and one of Alison’s close collaborators in advocacy), but we can come together to collaborate on projects like these because it affects everyone. We can spread our wings further when we do it that way too.”

HealthEVoices

“Clinical trials are important because without them we wouldn’t have current or future treatments. If it wasn’t for the people that do the trials then I would still be on high doses of Prednisone.”

As a member of The Breakthrough Crew, Alison shares her hope of breakthrough research and the potential that clinical trials pose to advancements in medicine.

“Clinical trials are important because without them we wouldn’t have current or future treatments. If it wasn’t for the people that do the trials then I would still be on high doses of Prednisone.”

While Alison doesn’t qualify for most clinical trials due to her liver disease, primary sclerosing cholangitis, or her ostomy, she strongly believes in them. She feels passionately about clinical trials in part because her own doctor is a clinical trial doctor. He shares information with her on all of the trials he’s doing, which gives her confidence that she will continually have access to current treatments. Alison believes no patient should be stuck with outdated methods of treatment that either don’t work long term or have horrible side effects.

lexey
Lexey Lutz is a mental health patient advocate who spent her summer working as an intern for Clara Health.