When I say Inflammatory Bowel Disease (IBD), what comes to mind? Do you think of the Humira commercials on TV? Or those intense diets like Whole30, SCD and Paleo? Or, even better, those dreaded colonoscopies? Maybe you do, but I wouldn’t be surprised if none of those things came to mind. IBD is hardly ever talked about, which is totally understandable. I mean, bathrooms are gross. Intestines are even grosser! Potty talk might be taboo, but this stuff affects everybody! So what is IBD? Why should you care? And why am I writing about this?
What is IBD? Simply put, IBD is an autoimmune disease. There are two major categories of IBD: Crohn’s and ulcerative colitis. They are both chronic inflammatory conditions of the gastrointestinal tract. Some common symptoms during a flare are: diarrhea, rectal bleeding, urgency, abdominal pain, bowel obstructions, fever, weight loss and fatigue.
Why should you care? These days it seems that everyone is affected by some sort of digestive issue, so being more mindful about digestion will benefit you no matter what. Plus, it’s likely that someone you know has it! IBD affects approximately 1.6 million Americans—a growing number.
And why am I writing about this? Seven years ago I was diagnosed with ulcerative colitis (UC). Over countless hospital visits, six scans, twelve colonoscopies, two biologics, four obstructions and three surgeries later, I am now on my way back to health. When I was first told I had UC, no one I knew had any clue what it was, but since then awareness has grown exponentially. Unfortunately, that’s because more and more people are getting diagnosed and there’s not nearly enough conclusive research on it. And what’s more? Gastroenterologists have very limited knowledge on the day-to-day struggles involving this disease. That’s why I’ve decided to sit down and write a post about the eight things you should know about IBD from the lesser heard perspective: the patient’s.
Gastroenterologists have very limited knowledge on the day-to-day struggles involving this disease and many general practitioners are not familiar with IBD at all.
1. You are your own advocate
IBD is a “silent disease,” meaning people with IBD often look healthy on the outside, but are fighting a serious battle internally. A doctor is mostly only able to assess you clinically, so if this disease—or any chronic illness—affects you, don’t sugarcoat how you’re feeling when you sit down with your doctor. Speak up for yourself!
2. Get ahead of a flare
Another reason why you should be honest with your doctor is that it’s vital to get ahead of a flare-up. This goes for any autoimmune disease! Once my symptoms got out of hand, they were very hard to control. Often times I didn’t want to go on corticosteroids because of their nasty side effects, but then I usually ended up having to go on them for longer because I waited too long (maybe even just three days too long) to treat my flare.
3. Don’t be afraid to talk about it
Being a very private person, this was a difficult lifestyle adjustment for me. But a support system is a must. Before I was honest about my disease, it created a lot of social anxiety and stress for me (which is never good for inflammation). I was always wondering what people thought of me when I would miss school, skip out on sleepovers, dart to the bathroom or avoid certain foods. Now that my closest confidantes know, I no longer have to worry what they’re thinking. They are my biggest advocates and we make jokes about it all the time. That’s way better than silence.
4. Be careful about diet
People with IBD don’t go on “fad diets;” they go on lifestyle adjustments. It’s important to do your own research to figure out what foods do and don’t make you feel bloated and crampy. It’s like a car: if you feed it the wrong fuel, it won’t run properly. However, I have two major warnings about doing this:
1) Get a food sensitivities test BEFORE you start eliminating foods. A food sensitivities test will only pick up on the foods you’re currently eating, so it’s a null test if you’ve already eliminated a bunch of food.
2) Go SLOW. Take one food out at a time so you can isolate the problem and avoid irritation. People’s digestive systems—especially those with IBD—are sensitive. You can really cause issues if you cut out a bunch of things cold turkey!
5. Everyone is different
IBD manifests itself differently in everyone. Its cause is primarily unknown, but it can be affected by the food we ingest, the environment we live in and our unique genetics. As my surgeon once told me: “IBD doesn’t follow the rules.” There are many ongoing research projects, such as the Micro Biome Initiative, that are studying this factor, but the important thing for the patient to realize is that what works for someone else might not work for you. This includes diet, medication and symptoms. Listen to your own body and do what is healthiest for you.
6. Be okay with being a planner
Over the years struggling with this disease, I’ve become increasingly Type A. At first I was bummed that I couldn’t be as spontaneous as my friends, but now I realize that being strategic doesn’t mean I can’t have fun. I just have to have open communication with my friends and family and be a little more mindful when I make plans. My greatest advice here is don’t apologize (especially to yourself) for being healthy minded—your wellbeing depends on it!
7. Seek individualized care
In combination with my gastroenterologist, a holistic medicine doctor proved very helpful in my final recovery because IBD affects the whole body: stress, anxiety, fatigue, hormones, nutritional absorption and so much more, which makes sense, since your intestines provide the fuel for your entire body and are linked to the nervous system as well as some hormones. A holistic medicine doctor will treat your whole body and create an individualized treatment plan to accommodate your unique needs. This goes for all chronic illnesses—don’t just focus on one organ or problem, because they’re all connected!
8. Avoid Pelvic Floor Dysfunction
I’m not just talking to IBD people! I’m talking to the generally anxious and stressed-out people like CEOs, mothers and Type A folks! Speaking from experience, Pelvic Floor Dysfunction is a pain in the butt (literally). It’s when you’re unable to control the muscles in your pelvic floor. Believe me the physical therapy involved is worth avoiding. Once your muscle memory has switched gears, it’s incredibly difficult to switch back. Being too loose or too tight is problematic for things such as elimination, sex and childbirth. So work those pelvic floor muscles by doing Kegals and trying out some yoga!
Like your heart or your brain, intestines are irreplaceable and you can’t live without them.
You may have wondered why I’ve been speaking about my UC in the past tense. A year ago I finished a three-stage IPAA surgery to replace my colon with a “j-pouch” in order to sustain life. It was a major undertaking that took one year to complete and then an additional year to recover from. Although my climb back toward health is not yet over, I’ve gained a lot of wisdom along the way that I hope can benefit others. My list of eight things you should know about IBD is drawn from personal experience. If you walk away with anything from this list, I hope it’s the realization that intestines are invaluable. Like your heart or your brain, they are irreplaceable and you can’t live without them. So, please, listen to your body and take care of your digestion!