Mastering Life Beyond the Gut: A Crohn's Advocate's Journey Through Extra-Intestinal Manifestations

magnifying glass over intestines
People living with IBD commonly develop conditions that occur outside of the gastrointestinal tract.iStock

Living with IBD, commonly referred to as an “invisible illness,” is challenging enough, but beyond life with Crohn’s disease or ulcerative colitis is the added complexity of extra-intestinal manifestations, or EIMs, which are associated directly with IBD. I suffered in silence for five years before receiving my Crohn’s disease diagnosis, and when it was confirmed, I felt a sense of relief knowing I could seek appropriate medical care and therapeutic treatment options. What was unknown to me at the time was that IBD is considered a systemic disease. EIMs are proof that IBD extends far beyond the digestive system, oftentimes affecting multiple organs, and is frequently debilitating.

In sharing my story, I invite you to learn and understand more about my own reality, as well as that of most IBD patients. We face the ongoing saga of living with IBD, marked not only by our symptoms from the disease itself, but also the many disruptions that manifest throughout. Each of the EIMs I have faced have added their own twist to my IBD journey.

Iron Deficiency: Living Life on Low Battery Mode

One of the most common EIMs patients live with is fatigue, which can best be defined as an overwhelming sense of tiredness, lack of energy, and exhaustion. It truly is like living on “low battery mode.” IBD fatigue is the unexplainable fatigue that no one can truly relate to and can affect over 80 percent of IBD patients with active disease and over 50 percent of patients in clinical remission, according to the Crohn's and Colitis Foundation. Oftentimes iron-deficiency anemia (IDA) can be the culprit as it affects 1 in 3 IBD patients, including myself. Since my initial diagnosis and concurrent IDA diagnosis, I receive iron infusions regularly. Oral iron supplements are not an option for me due to the gastrointestinal effects of iron. But when administered intravenously, there are minimal to no side effects. Over the last 20 years, I’ve received IV iron countless times, but I’ve also gone through lengthy periods of time when my iron panel is perfect and in turn, my fatigue improves. While I’ll certainly live with IDA indefinitely, I’m grateful to have IV iron as a treatment option for anemia.

Eye Spy: Adventures in Ophthalmology

Approximately 10 percent of IBD patients experience ophthalmological issues, ranging from chronic dry eye, episcleritis, iritis and even uveitis. My initial experience with an ophthalmologist was three years after my diagnosis due to the early development of a cataract. While cataracts are not a direct correlation to IBD, oftentimes, the medications used to treat IBD can cause them (such as corticosteroids). In my case, I had never been on steroids at the point, so there is no known reason for my cataract. Within a few years of having multiple cataract surgeries, I awoke to the most excruciating eye pain. It was early dawn and even the slightest bit of light caused the most penetrating eye pain I’d ever experienced. Luckily, my ophthalmologist was available when I reached out in the early morning hours to consult with him, and he was able to have me seen by his colleague within hours. Suddenly I found myself with a new diagnosis: uveitis.

Uveitis is the painful inflammation of the uvea or middle layer of the eye, which causes pain, blurred vision, light sensitivity, and redness. These symptoms may come on gradually or quite suddenly, like they did in my case. To treat my uveitis, my ophthalmologist prescribed steroid eye drop to reduce inflammation. If left untreated, uveitis can progress to glaucoma or even vision loss! Unfortunately, glaucoma was a complication I personally faced due to the complex nature of my uveitis. Glaucoma damages your eye's optic nerve and occurs when fluid builds up and increases pressure inside the eye. Due to recurrent uveitis flares and limited treatment options available, I suffered for nearly three years. During this time, I even participated in a?uveitis clinical trial, to no avail. Eventually, I accepted the use of an intravitreal steriod implant called?Ozurdex (dexamethasone intravitreal implant), which slowly dissolves in the eye over time. Although I needed multiple implants injected over months, I’ve fortunately not had a uveitis flare since.

Navigating Life's Unwanted Plumbing Project: Perianal Fistulas

Looking back though, the first EIM I had was before my actual diagnosis of Crohn’s disease. For five years, I was living undiagnosed, but with active perianal fistulas, which are a common type of enterocutaneous fistulas or abnormal channels that form from the intestine to the skin in Crohn’s disease patients. About one-third of Crohn’s patients are at risk of developing fistulas, and I was in that unfortunate group. Because my disease initially presented this way, I had sought care with a dermatologist, followed by a general colorectal surgeon, and it wasn’t until years later that I was under the proper medical care with an IBD specialized colorectal surgeon, who properly diagnosed and treated me. I could have suffered far less had my fistulas been identified as an EIM of Crohn’s disease.

A Practical Guide to Recognizing, Managing, and Seeking Care for Extra-Intestinal Manifestations in IBD

While I’ve only detailed a few of the EIMs I’ve faced, I’ve also encountered periods of time with anxiety and depression, commonly associated with IBD, according to the Crohn's and Colitis Foundation, as well as migraines. Between 25 and 40 percent?of IBD patients experience EIMs ranging from joints, skin, bones, eyes, kidneys, and liver, per the Crohn's and Colitis Foundation. Unfortunately, these manifestations can occur with active IBD, and oftentimes without active IBD disease activity. Simply put, there are many unknowns about IBD and EIMs, specifically which patients develop them, why we develop them, and the variation of EIMs amongst the patient population. Fortunately, it is a research priority in the field of IBD.

It is crucial to recognize that EIMs are very real and tangible aspects of our daily IBD struggle. They certainly demand our attention and proactive approach to seeking care.
—?Rocio Castrillon
That's why I want to emphasize the importance of building a multidisciplinary care team. It is not just about managing our IBD or EIM symptoms, but it’s also important to find support in every aspect of your health journey, and with the right medical care. Remember, your voice and your experiences matter, and with a dedicated team, you can confront these challenges. Please take that step, advocate for yourself, and seek the comprehensive medical care you deserve.

Important: The views and opinions expressed in this article are those of the author and not Everyday Health.