Coming Clean About My IBD Mistakes

Coming Clean About My IBD Mistakes

I’ve made many mistakes along my disease journey. The first, and most dangerous, was to believe that my fate was already sealed.
This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

Crohn’s and Colitis Awareness Week is December 1-7. If you have Crohn’s disease or ulcerative colitis, get tips from gastroenterologist Dr. Corey Siegel, a Crohn’s disease and ulcerative colitis expert, by visiting the online Expert Advice Tool before your next trip to the doctor’s office.

When I was 16, I was diagnosed with a disease I’d never heard of called ulcerative colitis. Approximately 700,000 people in the United States are affected by ulcerative colitis – a chronic inflammatory bowel disease (IBD) characterized by inflammation of the large intestine (colon and rectum). It is not caused by food or a contagious disease. 

Those are the facts. Now, for the reality.

Here’s the thing that nobody except another person who lives with IBD is going to tell you: it’s insidious. The descent is like the changing of the seasons, slow and inevitable. For me, it seemed like every day I felt a little bit worse and finally reached the point of me feeling like I was no longer living – only existing.

It’s impossible to know how any one particular person will manage upon reaching the bottom of their trajectory. A strong support structure of family and friends and an alert healthcare team can help by recognizing the decline and by advocating for a change in treatment. However, not everyone has these safety nets to catch them. In my case, while I had a strong support system in place, it took my being engaged fully and acknowledging that I needed help through my disease journey. There’s a difference between going through the motions of “seeing your doctor” and being an informed, engaged patient who is ready to roll up their sleeves and do the work to get the disease under control. It took time, and, honestly, a health crisis, to get me from one end of this spectrum to the other, but when I made the transition, it meant that I could finally reach my goals.

The Mistakes I’ve Made

I’ve made many mistakes along my disease journey. The first, and most dangerous, was to believe that my fate was already sealed. That my treatment regimen at the time was all there was and all there ever would be. That I had to power through the symptoms because they were just a part of the disease. That constant inflammation was expected. That there would not be any help for me and that there was no point in even asking.

The second mistake was failing to learn more about ulcerative colitis and mentally checking out of the medical decision-making process. During the course of my 10 years of living with near-constant flare-ups, I believed that my health would only get worse. I resigned to the likelihood of developing serious complications. I never thought that my health could get better, or that the inflammation could be managed, or that the ulcers could heal.

The third mistake I made was letting those around me believe there wasn’t any hope. As a single adult, I was solely responsible for my own care and I wasn’t forthcoming with loved ones about the extent of my symptoms. They took their cues from me and I was not in a place where I was acknowledging my disease in a realistic way.

A Common Problem: No Health Insurance

During this time, I also had a lapse in my health insurance even though I was working full-time. On top of this, I thought that even if I did receive care, there wasn’t anything that could be done for me anyway. I was so far down the deep hole created by my disease that I couldn’t find a way out by myself.

When I was finally eligible for insurance, I found a new physician who recommended testing to learn what was going on with the ulcerative colitis. Turns out, it had spread beyond its beginnings in my sigmoid colon and was now throughout my entire large intestine (which is called pancolitis). No one ever told me that this could happen and that it could result from a lack of disease management. I was now in a crisis situation and facing a colectomy. There was no other choice: my colon was too damaged to save with any other treatment.

My story has a happy ending: I found an incredibly talented and respected colorectal surgeon who performed a colectomy and j-pouch creation (which is a surgery that is done to fashion the last part of the small intestine into something like a rectum). I am living quite well with my j-pouch (married, two kids, house in the suburbs), and have been since 1999. But my disease never should have gotten as far as it did. Had I understood more about the nature of ulcerative colitis and the treatment options available to me, I could have done more to keep it under control. 

The Importance of Proactive Care

It is important to educate yourself on the chronic nature of IBD. It is a progressive disease, which means it can continue to get worse over time if you are not proactively managing it. If you have ulcerative colitis, work with your doctor (sooner rather than later) to create a monitoring and treatment plan focused on your long-term success and minimizing disease progression.

A good relationship with your healthcare team is the best way to stay on top of ulcerative colitis and ensure it is well-controlled. Starting a dialogue about the realities of your condition isn’t always easy, which is why some extra help can be a welcome addition when talking to your doctors. Get tips from gastroenterologist Dr. Corey Siegel, a Crohn’s disease and ulcerative colitis expert, by visiting the online Expert Advice Tool before your next trip to the doctor’s office.

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Disclosure: This post was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation.