The Pill Cam Endoscopy Helped Confirm My Crohn’s disease and My Nephew’s

I’ve never known a life that didn’t involve Crohn’s disease symptoms. My symptoms started very early on in life. The pediatrician who treated me from age 4 and on would mark it up to stomach viruses. I was just one of those kids who caught anything and everything.

Medically overlooked and misdiagnosed

Around the age of 15, my life was turned upside down by what we now know was my first big flare. Things were handled terribly wrong in that instance and only an upper endoscopy was performed. The upper endoscopy showed severe gastritis. Duh. But there wasn’t a reason why it was happening, and doctors didn’t perform due diligence to find out either.

I was medically overlooked as a teenager. Hormones were blamed, as was my mother. In other words, they made it sound like it was in my head not my insides. The feelings of hopelessness and distrust in doctors didn’t leave. I asked my mother to stop pursuing answers and I just existed for the next several years.

Declining health and a new doctor

After college graduation, I started my career. We had lived through several hurricanes in less than two months. As I worked my normal job and worked a side job at one of the only restaurants in the area with power and gas, my health began to decline again. I found a new GI and was petrified about reliving my teenage years all over again.

The doctor ordered a colonoscopy and upper endoscopy. When they wheeled me back to recovery, my friend who is a surgical nurse looked at my paperwork and exclaimed, “Holy Sh*t! You really are sick!” She had ulcerative colitis as a child and her colon was removed as a teen. She got it.

A confirmed diagnosis of Crohn's disease

The colonoscopy found scar tissue in my colon, and so much inflammation that the doctor couldn’t get into the small bowel. He took biopsies. The biopsies came back to confirm his hypothesis of Crohn’s disease.

Seven years later, I found myself in a similar situation needing an upper and lower scope. My Gastroenterologist ordered a pill cam endoscopy. She ordered a patency test, which is when you swallow a dissolvable pill in the shape of the pill cam. If you don’t see it in the toilet within 24 hours, you do an x-ray to see if it stuck somewhere. Brilliant!

The great thing about the patency capsule is that it’ll dissolve. When the patency pill passed a few hours later I no longer was in need of an x-ray. We moved forward with the pill cam test. In 2013, the pill cam endoscopy was the size similar in size to two large vitamin capsules placed next to one another. You’re allowed a small gulp of water to swallow the pill. I struggled because my nurse kept making me laugh. There were a few spit-takes before being able to compose myself.

Once I swallowed the pill cam, the hard part was over. They ask that you move around for the next 6-to-8 hours because movement helps peristalsis (the wave-like movement your intestines make to help pass digested food). I had sensors placed on my stomach and torso and had to wear a receiver pack that recorded the images sent from the pill cam inside my intestine.

They provide directions for when you can resume drinking fluids and eat food again. The pill cam had left my body shortly after I brought the receiver back to the doctor’s office. It was still blinking. Meaning, it had a lot of battery life left in it to keep recording.

A few weeks later, I sat in my Gastroenterologist’s office and she said, “Congratulations, it’s still Crohn’s disease.”

Fearful that my diagnosis could be revoked

I had told her of my fear, after seeing complaints on various social media outlets, that people had their diagnosis revoked. I grew terrified that this could happen to me. My origin from before diagnosis to actual diagnosis has left scars, and she understood and made me feel validated.

I asked if I could see some of the video (there was eight-hours-worth of video). She cued up the terminal ileum. And therein all of their gross glory were the ulcers. The tiny bad guys that had plagued me for close to two decades. I jumped with joy. Not the reaction she expected.

Seeing clusters of ulcerations thriving on your intestinal wall can be crushing. Not this gal! Viewing the things that had overrun my life, for so long, on that screen gave me a comfort that I’m not sure can be described. I’m pretty sure anyone who has walked this walk can empathize.

If there was ever a question before as to whether I had Crohn’s disease, that pill cam had shut it down.

Throughout the years, I’ve seen far too many comments from people experiencing symptoms related to their Crohn’s disease who had their diagnosis removed. A new doctor comes in and says their scope was clean, and they must have been misdiagnosed.

Similar happened to my nephew. A pill cam at the age of 3 and then again at 4 found the ulcers in his terminal ileum. It pushed us to find a specialist to do a high-level scope endoscopy to get into his terminal ileum to test.

Without the pill cam, both my and my nephew’s lives would be drastically different today.

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