Achieving IBD Remission: "I Got My Life Back"

I don't think anyone is ever prepared for what it takes to live with a chronic illness. On top of your physical and emotional health being ravaged, it requires major adjustments to your perspective.

For me, with ulcerative colitis, a form of Inflammatory Bowel Disease (IBD), it meant learning that sometimes accidents happen. There are times when I just can't hold it - even though that's something I learned when I was two-years-old.

It's learning that you have to make hard choices to manage your chronic illness -- eating a bland, unhealthy diet of white bread because it's easier to digest, or having only a spoonful of vegetables, which often are the cause of extreme digestive pain, before they come out in the toilet, or even just skipping meals entirely, because hunger pains are easier to deal with than digestive pains.

It's taking everything you learned about illness and treatments as a child, and throwing it out the window. When you're a kid and you get strep throat, you get a course of antibiotics. You stick to it, you get better, and you're done.

When I was diagnosed and started my first treatment for ulcerative colitis, it never once occurred to me that the treatment might not work and I'd have to explore other options, and that treatment itself is indefinite.

On top of your physical and emotional health being ravaged, [chronic illness] requires major adjustments to your perspective.

I was volunteering as a counselor at Camp Oasis, a summer camp for children with IBD, when I first heard about the treatment I currently use for my ulcerative colitis, now one of the most popular infusion drugs for autoimmune patients.

By the time I got involved at Camp Oasis, I was already a half a decade into my diagnosis. I had started, like many patients, on oral anti-inflammatories.

I still remember hearing campers say, "Becky doesn't even take pills. She just gets an IV every couple of months. And it really works for her!" Before this, I wasn't aware a drug like this even existed, let alone the concept of an infusion drug at all. Wasn't medicine just something that came in pill form, to be taken orally? The discovery opened my eyes to a world of new potential treatment options.

They got the job done...sort of. I'd feel a moderate level of relief, but it wasn't consistent. And it certainly wasn't indicative of remission. It was enough to get me by.

Camp Oasis

After a while, it just wasn't good enough for me anymore. I had already been through two different forms of anti-inflammatory, as well as countless rounds of steroids, and enemas.

I ended up switching doctors, because the doctor I had didn't seem to prioritize getting me to remission. With my new doctor I tried some more oral treatments, this time, from the immunomodulator class. This caused a small spike of relief, but we still weren't all the way there. Although I consider myself a tough cookie, I wanted to get all the way there. I wanted to live my then 23-year-old life to the fullest extent possible.

Hope is pretty important when you live with a chronic illness. Almost as important as a successful treatment itself.

By the time my new doctor suggested the biologic, I had already become familiar with the concept. I had heard a lot of success stories, not just from the Camp Oasis community, but from the IBD community at large. People called it their 'miracle drug' and for the first time in a long time, I had hope.

Hope is pretty important when you live with a chronic illness. Almost as important as a successful treatment itself.

To a patient like me, hope stemmed from the chance that I could reallocate my daily energy from managing all these intrusive aspects of my disease, to spending that energy on school, my career, relationships, and being active. It meant there was a chance I could set aside the constant stress of living with ulcerative colitis and finally experience a moment of being carefree -- a feeling I had forgotten.

Feeling hopeful for remission meant feeling hopeful that I could stop feeling like a state of disease. It meant I could perhaps just feel like...me.

The new treatment met my every hope. My symptoms became under control. I had energy. One morning, I woke up and noticed that I felt focused, rested. As time progressed remission felt like it was here to stay. I dusted off my running shoes. I ate a salad -- lots of salads! I got accepted into grad school. I even signed up for Team Challenge, because not only could I run again, but I could fundraise, raise awareness, and use my time to give back.

team challenge

While I was fundraising, I admit that I started to feel guilty. I felt good. I could run without the GI or fatigue effects from my disease. My community was fighting for better treatments and a cure, but I felt fine. I had my treatment. But one day, it occurred to me that this wasn't always a reality. In fact, the treatment that I'm currently on, that has kept me in deep remission for years, wasn't even approved for ulcerative colitis at the time of my diagnosis.

This medicine, which gave me my life back, wasn't even an option when I was first diagnosed. 

It was in that moment that I felt a renewed passion for these fundraising and training efforts. Without the advancement of research, studies of potential treatments, and the introduction of these new treatments to the market, I'd still be living with significant symptoms. I definitely wouldn't have gone through grad school, which means I probably wouldn't have a great career and some of the great opportunities that I've been able to take advantage of. I never would have started running again, and without running, I never would have met some of my best friends.

This medicine, which gave me my life back, wasn't even an option when I was first diagnosed.

My life is what it is because of the advancement of this process. Everyone deserves the symptom relief and the quality of life that I've been blessed to have.

I'm grateful to be able to give back. Although I haven't participated in a clinical trial myself, nor am I in a place to do so right now, I'm a living example of the direct effects of getting a treatment approved and bringing it to market.

running meg

As patients, we have a unique opportunity to contribute to this in a way that even top scientists can’t. We can keep hope alive for fellow patients.

The patients who participate in clinical trials have the opportunity to give back in a unique way. They can affect the community at large by using their own experience to contribute to science and research. It also gives them the chance to receive what might end up being their miracle drug, before it's even available to the general public. There are so many benefits, both personal and altruistic.

Not a day goes by when I don't think about how grateful I am to have found something that keeps me healthy, but I also think about my friends and those in the greater IBD community, who are desperately hoping for the same opportunity. Is their ideal treatment in the pipeline? Is it being advanced, or bottlenecked by the process?

Their ticket to health could be just around the corner.

As patients, we have a unique opportunity to contribute to this in a way that even top scientists can’t. We can keep hope alive for fellow patients.

As someone in remission thanks to a treatment that was made available to me through the participation of patients before me. To them I'm eternally grateful.

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Megan is an ulcerative colitis patient and advocate who founded the Great Bowel Movement, a non-profit supporting IBD patients.