When A Colonoscopy Just Doesn't Cut It

Last week, I had my first colonoscopy in 7 years. This might shock you, as many IBD patients have them as frequently as once a year. My history with this procedure is lengthy. Between 2009-2016, I went through a hell of a diagnostic journey.

I had all of the Crohn's disease symptoms, but test results continued to be inconclusive. During this time, I underwent 12 colonoscopies - all with the same outcome - there was no evidence of ulceration or blatant inflammation in my large intestine.

I'd wake up from sedation and when my doctor would poke his head in he'd slowly shake it from side to side. "Again, I didn't see anything, I'm sorry."

Finally diagnosed with Crohn's

In 2016, that all changed. It was recommended to complete a pill camera test (a capsule endoscopy) in order to view the intricacies of my small intestines. It was that test, and that test alone, that solidified my Crohn's disease diagnosis and therefore my pathway to effect symptom management.

Medication wise, I started on a pill - 6MP, but it didn't do much to improve my quality of life. About six months later I switched to Entyvio, hoping that as a gut specific biologic I wouldn't have many side effects. In general, it gave me some relief from symptoms, but I knew it wasn't going to be a long time use case.

Switching my biologic

At the end of that year, I was diagnosed with another autoimmune disease called rheumatoid arthritis, and I needed a biologic medication that would address the inflammation and symptoms of both diseases. That's when I switched to Remicade.

After about six months on Remicade, I had both a colonoscopy and an MRE (MRI with contrast), and the improvement in my bowels was noted to be considerably better than it had been. I've been holding on to Remicade, and my protest of uninformed colonoscopies since then.

Colonoscopy versus routine MRE

It's not that the colonoscopy is a bad test, and I know for a lot of people it's how they get diagnosed with IBD, polyps, diverticulitis, and even colon cancer. But for me, in my body, the colonoscopy couldn't provide any valuable information to my doctors or my treatment plan. With the preparation for the test itself being so grueling, my doctors decided at the time that it wasn't worth it to continue to put my body through such turmoil for negligible results.

So instead, I switched to routine MRE's - a test that traces barium through your intestines, illuminating inflammation, ulceration, polyps, active bleeding, etc. And this plan was fine for me. As someone who has mostly had stable disease activity for the last 7 years, I've missed nothing by not having regular colonoscopies.

A new physician

The only wrench in my plan was that my faithful and trusted doctor retired, and I had to relocate my IBD care to a new physician at a new medical practice.

Upon explaining that recently I'd been having some episodes of increased symptoms, he immediately ordered.... a colonoscopy. This is where I told him I understood that he wanted to see a baseline of my intestines, but that a capsule endoscopy or MRE would be much more beneficial for us both. He agreed, although scheduling the two tests didn't happen quite as easily.

I had to complete the colonoscopy in early June, and then the MRE in early August - a time difference that was ultimately unhelpful as I knew he'd be seeing the "healthiest" parts of my digestive tract before the damaged part, but there wasn't really anything I could do about it.

A clean colonoscopy

As suspected, when I came out of twilight sedation last week, the doctor told me everything looked great and that he sent off some biopsies but wasn't worried about them. I on the other hand, was thrown back into the world where clean colonoscopies meant that I was still undiagnosed, and untreated. And again, note, it's now been 8 years since my diagnosis and seven years on a biologic that has both changed and saved my life.

My dream for the standard of IBD care is that physicians listen more closely to what patients are telling them. I detailed the uptick in symptoms which were abnormal for me, and I knew a colonoscopy wouldn't explain them, but he was adamant that we try that first. He denied the capsule endoscopy in case there were strictures or a partial blockage which would cause the pill to get stuck and have to be surgically removed, but he did agree to do the MRE. I just would have to hold tight, and hope that this pain along with the urgency and frequency can keep me out of the hospital until we have the chance to learn more about what's happening on my insides.

Does anyone else experience this?

I'd love to know if any of you have had "clean" colonoscopies even with active disease (small intestine, specifically)? If this is you, could you share your story below so we can connect. I know how agonizingly frustrating this is, and I don't want anyone to have to go at it alone.