10 Things To Know About Inflammatory Bowel Disease

Over the last year or so, you may have noticed an uptick in health content. This is an organic development that I would attribute to three things. First, over the past year I have experienced considerable confusion and frustration over mystery medical issues (which I have referred to generally as aging lady problems). Second, given my former career as a neuroscientist, when things go south, I like to systematically collect data so I can evaluate potential factors. And third, given that our healthcare system is a CLUSTER, the reality is that the best thing you can do for yourself (and your kids) is to get in the game when it comes to collecting data and information so you can better advocate for your or your kids’ health needs.

Today I’m sharing about the unglamorous yet important topic of inflammatory bowel disease (IBD). As is the case for pretty much all parents, the bowels are a topic that gets considerable play in our house. And I will be really candid and say that I’m pretty sure that all roads lead to the (seemingly) humble bowel. If I’m stressed out and anxious (not uncommon around the holidays given that the relationship between me and one of my brothers can best be described as a sibling dumpster fire), what shuts down? My bowels. And if I’m making indulgent, unbalanced food choices (pecan pie for breakfast, lunch, and dinner because OMG THE STRESS WITH MY BROTHER!), what shuts down? My bowels. It’s such a regular (see what I did there?) issue that even my mother frequently asks, “Christine, how’s your pooping?” Being a human being is humbling, you guys.

So when Med-IQ asked me to help generate awareness around IBD, I was like, YES I AM DOWN WITH TALKING ABOUT BOWELS! For background: Med-IQ is an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, and other healthcare professionals. A couple of weeks ago I was on a briefing call with Dr. Stephen Hanauer (Professor of Medicine at the Northwestern University Feinberg School of Medicine and Medical Director of the Digestive Health Center at Northwestern Medicine); he talked passionately about helping people take control of their bowel situation (my words, not his).

Today I’m gifting you with an IBD primer including 10 key things to know about IBD. I learned a ton on the briefing call and while preparing this post, and the biggest surprise to me was the prevalence in teens (which of course is top of mind as a relatively newly minted parent of a teenager). I’m grateful for an enhanced level of awareness so I’m ready if this comes down the pike for me or my beloved family members!

1. What is IBD?

IBD refers to disorders of the digestive tract characterized by long-term (chronic) inflammation. The two most common types of IBD are Crohn’s disease (CD; inflammation that affects the entire digestive tract) and ulcerative colitis (UC; inflammation that affects only the large intestine, aka the colon).

2. How is IBD different from IBS?

IBS (irritable bowel syndrome) and IBD have several symptoms in common (cramping, abdominal pain, diarrhea); however, there are a number of differences. IBS does not involve inflammation and having IBS does not make you more likely to develop other colon conditions like UC, CD, or colon cancer. The IBD symptoms of bloody stool, lack of appetite, weight loss, and fatigue are not symptoms of IBS. Women are more likely to have IBS than men (IBD is just as likely in men as in women). Psychological distress (anxiety, depression, childhood adversity) may be a risk factor for IBS (but stress can contribute to IBD flare-ups).

3. How common is IBD?

In 2015, 1.6 million people were being treated for IBD, and 5% of those patients were under the age of 18. Nearly 25% of people with IBD are diagnosed during childhood or teenage years.

4. What are the symptoms of IBD?

Symptoms of IBD can vary from person to person and in the same person over time. Red flags of IBD include: 1) rectal bleeding, 2) diarrhea that wakes you up at night, 3) weight loss (defined as 5% of body weight), 4) fever, or 5) inflammation in other parts of the body other than the GI tract—including arthritis, ulcers of the mouth, joint pain, or inflammation of the eye. Symptoms of IBD related to inflammation of the GI tract include diarrhea, rectal bleeding, urgent need to move bowels, abdominal cramps and pain, sensation of incomplete evacuation, and constipation. More general symptoms associated with IBD include fever, loss of appetite, fatigue, night sweats, and loss of a normal menstrual cycle.

5. What causes IBD, and what are the risk factors?

The cause of IBD is not definitive, but it is in part caused by an abnormal response to the body’s immune system. Risk factors include: 1) age (most people are diagnosed in their 20s-30s), 2) race or ethnicity (Caucasians have the highest risk, but IBD can occur in any race; there’s an even higher risk if you are of Ashkenazi Jewish descent), 3) family history (risk is higher if a close relative has the disease), 4) cigarette smoking (the most important controllable risk factor for developing CD), 5) nonsteroidal anti-inflammatory medications (includes ibuprofen [Advil, Motrin IB, others], naproxen sodium [Aleve], diclofenac sodium [Voltaren], and others), and 6) where you live (you are more likely to develop IBD if you live in an industrialized country).

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6. Why is IBD a source of concern for kids and teens?

Kids and teens with IBD are affected by their anger about IBD symptoms and treatment, body image, fatigue, and feeling a lack of control over school and extracurricular activities. IBD can also affect growth in children.

7. What are the goals of IBD treatment?

The goals of IBD treatment are to: 1) heal the inflammation of the bowel wall to eliminate symptoms, 2) prevent additional bowel damage that could lead to more-severe complications, and 3) improve quality of life. To accomplish these goals, it is important to understand how severe the symptoms are, how much bowel damage there is, how well the person has responded to previous treatments, and how likely it is that the person is going to progress toward more-severe disease.

8. Why is it a good thing to opt for aggressive treatment (vs. symptom management)?

Traditionally, IBD was treated using a “step-up” approach, which means doctors would start with less-intensive therapies and “step up” if the initial treatments were insufficient. More recently, a “top-down” approach has been favored in the management of IBD, which opts for aggressive treatment from the start. A top-down approach is favorable because it: 1) reduces repeated courses of steroids and 2) starts treatment right away with immunomodulators or biologic agents that induce and maintain remission, heal the bowel wall, and reduce surgeries and hospitalizations.

9. How can you get more engaged in your care and be an effective self-advocate or advocate for your child?

  • Be honest with your doctor about your symptoms and whether the medication you are on (if you are taking one) is alleviating symptoms for you
  • Write down questions to ask the doctor (scroll down here for sample questions)
  • Be aware of any pre-appointment restrictions
  • Write down symptoms (you can track your symptoms using an app called GI Buddy)
  • List all medications
  • Take a family member or friend along to be a second set of ears
  • Engage with other folks with IBD in virtual or real-life support groups (find a chapter near you and/or check out I’llBeDetermined)

10. In addition to medical treatment, what are some other ways to manage IBD?

There are a number of lifestyle modifications you can make to manage the symptoms of IBD:

  • Avoid certain foods and beverages (especially during a flare-up) that can aggravate symptoms
  • Limit dairy products
  • Try low-fat foods
  • Take care with fiber
  • Avoid spicy foods, alcohol, and caffeine
  • Eat small meals
  • Drink plenty of liquids
  • Take a multivitamin
  • Talk to a dietitian
  • Try to manage stress through exercise, biofeedback, and relaxation and breathing exercises (high stress can trigger flare-ups)

I hope this information is helpful! And if it’s easier for you to process information through video, check out this Facebook Live broadcast with Dr. Stephen Hanauer. 

Disclosure: I was compensated by Med-IQ through an educational grant from Takeda Pharmaceuticals U.S.A., Inc. to write about the signs and symptoms of inflammatory bowel disease. All my opinions are my own. The links provided in this post are provided as a convenience and for informational purposes only; they are not intended and should not be construed as legal or medical advice nor are they endorsements of any healthcare provider or practice. Med-IQ bears no responsibility for the accuracy, legality, or content of the external site or for that of subsequent links. Contact the external site for answers to questions regarding its content.

Featured photo by Jamie Street on Unsplash