From Nurse To Patient: My Journey With Crohn’s Disease

·5 min read
Photo credit: Maskot - Getty Images
Photo credit: Maskot - Getty Images

As a healthcare professional, Alison spent her days doing endoscopies, which are one of the many tools that help people get to the bottom of mysterious gastrointestinal issues. So imagine how shocked she was when she started experiencing unexplained weight loss, abdominal pain, and rectal bleeding—the same symptoms she heard about from her patients who had an inflammatory bowel disease (IBD) like Crohn’s disease.1 “I remember talking to patients with Crohn’s disease and wondering how they were able to manage through this disease while trying to live their lives—I thought, ‘I could never do that,’” Alison says.

Photo credit: Hearst Owned
Photo credit: Hearst Owned

Yet before long, a gastroenterologist she worked with confirmed it: She had Crohn’s disease. Her world was turned upside down.

Approximately 3 million adults in the United States have a type of IBD—like Crohn’s disease or ulcerative colitis.1 IBD can cause inflammation of the digestive tract; Crohn’s disease can affect any part of the GI tract from the mouth to the anus, but most commonly affects the end of the small bowel and the beginning of the colon.1 Symptoms range from mild to severe and may include abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition, according to Mayo Clinic.2

While this chronic disease can occur at any age, it’s often diagnosed in adolescents and adults in their 20s and 30s.1

Crohn’s disease can be difficult to diagnose at first because the symptoms can vary from person to person depending on location of the disease.1 Alison’s first sign was weight loss, something she chalked up to working out and eating healthy. Next, there was abdominal pain and even some blood in stools, but the timing seemed to overlap with her period. It wasn’t until an MRI that her doctors were able to confirm a Crohn’s disease diagnosis.3

This isn’t a sexy disease. But I need to talk about it.

At first, Alison had a hard time accepting her diagnosis. “There is nothing like seeing my body in this state—I had a moment of ‘I didn’t choose this, and I didn’t want this,’” she says. She even switched her job from gastroenterology to dermatology to distance herself from the constant reminder of her illness.

Photo credit: Hearst Owned
Photo credit: Hearst Owned

Navigating Crohn’s disease with her insider knowledge and access to specialists was hard enough; she wondered how people without connections managed. “I have all the cell phone numbers, all these contacts,” says Alison. “I can’t imagine how isolating and scary this would be to a patient with no connections and no healthcare experience.”

That’s why Alison decided to speak out and raise awareness of IBD and Crohn’s disease. She wants others to know they are not alone and there are ways to manage this condition. “This isn’t a ‘sexy’ disease,” says Alison. “But I need to talk about it.”

On my 30th birthday, I started treatment.

Photo credit: Hearst Owned
Photo credit: Hearst Owned

There is no cure for Crohn’s disease, but the symptoms can be managed with prescription medications, and/or in progressive severe cases with surgery.4 Alison started taking medication on her 30th birthday. Eventually, she and her doctor talked about trying a prescription medication called STELARA® (ustekinumab) for adults 18 years and older with moderately to severely active Crohn’s disease or ulcerative colitis. STELARA® is a biologic that works differently. It’s the only FDA-approved medication that targets the two proteins, interleukin (IL)-12 and IL-23, believed to be associated with gastrointestinal inflammation in Crohn’s disease.

STELARA® is not for everyone. Only your doctor can decide if it is right for you. STELARA® affects your immune system. It can increase your chances of having serious side effects including serious infections, cancer, serious allergic reactions, lung inflammation, and a rare condition — posterior reversible encephalopathy syndrome. Please see Important Safety Information below and review the Medication Guide for STELARA® to learn more about the risks associated with STELARA®. Discuss any questions you have with your doctor.

For more information on STELARA® go to stelarainfo.com.

STELARA® treatment starts with a one-time intravenous (IV) infusion through a vein in your arm that provides the amount of medication based on your body weight and is administered by a medical professional. It takes at least 1 hour to receive the full dose of medicine. After the one-time IV infusion, you will receive STELARA® as an injection under your skin (subcutaneous injection) every 8 weeks. STELARA® is intended for use under the guidance and supervision of your doctor. If your doctor decides that you or a caregiver may give your injections of STELARA® at home, you should receive training on the right way to prepare and inject STELARA®.

Individual results may vary. STELARA® may not be right for everyone. Only your doctor can decide if STELARA® is right for you.

I learned the strength inside of me.

With support from her healthcare team, Alison says she feels much better and has experienced symptom relief. She is able to stay active and keep working at the job she loves.

After her own experience, she wants others diagnosed with Crohn’s disease to know help is out there. The key is to find a doctor you trust and can be totally honest with when discussing your best treatment options.

But most importantly, Alison wants everyone with IBD to know she feels you. “There is something very disheartening about hearing that there is no cure,” she says. “It can put people in a really dark place. People may feel isolated and like they can’t be who they once were. They need to be reminded of what their body is capable of. You learn to harness the strength inside of you. They need to remember that there is hope in what they are going through.”

1Crohn’s and Colitis Foundation. Overview of Crohn’s Disease. Accessed February 25, 2022. https://www.crohnscolitisfoundation.org/what-is-crohns-disease/overview

2Mayo Clinic. Crohn’s disease. Accessed February 25, 2022. https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304

3Crohn’s and Colitis Foundation. Surgery for Crohn’s Disease. Accessed February 25, 2022. https://www.crohnscolitisfoundation.org/what-is-crohns-disease/treatment/surgery

4National Institute of Diabetes and Digestive and Kidney Diseases. Treatment for Crohn’s Disease. Accessed February 25, 2022. https://www.niddk.nih.gov/health-information/digestive-diseases/crohns-disease/treatment#:~:text=Doctors%20treat%20Crohn's%20disease%20with,to%20keep%20you%20in%20remission

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