Getting the Health Answers You Need
- Katie Harpur, now 25, was diagnosed with Crohn’s disease at 16 years old. But it took a long time for doctors to get to the right diagnosis.
- Doctors initially thought she had an eating disorder or that she was a hypochondriac.
- Crohn’s disease is a type of inflammatory bowel disease (IBD) that causes inflammation, or swelling of the tissues, in your digestive tract, according to the Mayo Clinic.
- There are many potential symptoms of the disease including (but not limited to) abdominal pain, diarrhea, fatigue, weight loss and malnutrition.
- We’ve talked to many medical professionals and disease survivors over the years, and so many of them share their stories to urge others to advocate for their health.
- Some ways to do so include: speaking up, coming to appointments with questions, knowing your body and it’s normal functioning, seeking multiple opinions and refusing to feel dismissed.
Now 25, she’s showing people that you have to speak up for yourself — and fight to get the answers you need — when dealing with a health issue.Read More
“I lost a dangerous amount of weight and weighed just [70 pounds], but I didn’t have an eating disorder, it was just too painful for me to eat and if I did eat, I would vomit.
“I remember one doctor told me I was a hypochondriac, but I knew something wasn’t right.”
Take Charge of Your Health
Harpur kept pushing for appointments because she knew something was wrong. Sadly, it took getting to the point where, then 16, she was unable to walk. That’s when she finally got a correct diagnosis.
“I couldn’t physically walk anywhere, I was so weak, and I ended up in hospital,” she explained. “The biopsies from the colonoscopy came back and confirmed that I had Crohn’s disease.”
There is no curative treatment for Crohn’s disease, but there are things that can help patients live a high-quality life with the condition.
For Harpur, medication was the first step, followed by the implementation of a stoma bag – a bag that attaches to the skin and collects stool after a surgical procedure connects part of the large intestine (colon) to a surgical opening in the abdominal wall (stoma). It is also called a ileostomy or colostomy bag.
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Harpur’s temporary stoma bag was fitted in 2019, but, unfortunately, she had to have the procedure reversed due to infections and other complications. Once her Crohn’s symptoms returned, she made the difficult decision to have a permanent stoma bag fitted in 2022.
“Because there were so many issues with the first one, I was really nervous, especially as this stoma couldn’t be reversed,” she said. “But my condition had gotten so bad and I was in so much pain, that this was really the only option for me at this point.”
Thankfully, the procedure went smoothly, and the results have been nothing short of life-changing.
“I’ve had no issues at all with it and it’s honestly the best thing I’ve ever done,” she said.
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Now, Harpur has the freedom to travel far and wide with her handy stoma bag. She’s even booked a three-week trip to Tokyo, Japan, for September 2023, with plans to travel more in the near future.
“Not being able to speak Japanese, I would have found it very hard to find a public toilet, so wouldn’t have been able to do the trip before,” she said. “But now I’m planning to go to Mount Fuji and Super Nintendo World, which I’m really excited for.”
What Is Crohn’s Disease?
Crohn’s disease is a type of inflammatory bowel disease (IBD) that causes inflammation, or swelling of the tissues, in your digestive tract, according to the Mayo Clinic. The organs of the digestive tract include the mouth, pharynx (throat), esophagus, stomach, small intestine, large intestine, rectum and anus.
The disease can be painful and debilitating and may even lead to life-threatening complications.
Symptoms of the disease, when it is active, include:
- Abdominal pain/cramping
- Bloody stools
- Mouth sores
- Decrease in appetite and weight loss
- Pain or drainage near/around the anus due to inflammation from a tunnel into the skin (fistula)
People who develop severe Crohn’s disease can also experience other symptoms like:
- Inflammation of joints, skin and eyes
- Inflammation of the bile ducts or liver
- Kidney stones
- Iron deficiency (anemia)
- In children, delayed growth or sexual development
Talk with your doctor if you ever experience one or more symptoms that concern you — or even if you simply notice a change to your health.
And it’s always a good idea to speak with one or more medical professionals. You never know when addressing a seemingly innocuous issue can lead to a serious diagnosis.
Crohn’s disease does not have a cure, but therapies can greatly reduce symptoms and induce long-term remission and healing of inflammation. Some treatment options include anti-inflammatory drugs, immune system suppressor drugs, biologic drugs, antibiotics, nutrition therapy and surgery.
How to Advocate for Your Health
Advocating for your health is crucial to receiving the best possible care. But don’t take it from us, take it from the many disease survivors and medical experts we’ve spoken with over the years.
Advocating For Yourself While Navigating the Medical World
Below is a list of a few things you can do to advocate for your health in their words:
- “The squeaky wheel gets the oil:” Breast cancer survivor Jenny Saldana urges people to continue speaking up if they feel like their concerns aren’t being taken seriously.
- “Get knowledge:” Colon cancer survivor Evelyn Reyes-Beato says people should come to appointments prepared with questions and make physicians “earn that copay.”
- “The truth is you have to be in tune with your body, and you realize that you are not the statistic:” Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, encourages patients to stand up for themselves because they might not “fit into” the mold of healthcare guidelines. He also says patients should always leave appointments with a plan.
- “If your doctor doesn’t listen, get a second opinion:” Breast cancer survivor Stephanie Virgin wants people to push for answers when they don’t feel right – even if that means seeking multiple opinions.
- “We really do want our doctors to like us, but you have to take charge:” Breast cancer warrior April Knowles urges people to ask questions when something is wrong. No one should feel dismissed by their doctors.
“You Are Your Own Best Advocate”
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