I thought it would be helpful to share my top 10 tips for those who do not have inflammatory bowel disease (IBD). It's my hope that after reading this article, you'll feel more comfortable approaching family members and friends with these diseases and be able to have compassionate and thoughtful conversations.
1. Do not compare IBD to IBS.
This, above all, is aggravating and makes those of us who battle Crohn's and colitis cringe and roll our eyes—whether we do it in front of you or not. We understand that you are trying to relate to our situation because you think our disease is all about going to the bathroom, but please refrain from making this comparison.
IBD refers to a chronic, autoimmune disease that wreaks havoc and causes inflammation of the gastrointestinal tract; the inflammation can span from your mouth to your anus. Aside from abdominal pain and trips to the bathroom, we deal with a laundry list of other symptoms ranging from chronic fatigue to uveitis (inflammation to the middle of the eye). I'm not saying irritable bowel syndrome (IBS) is a walk in the park, but it's on a different playing field.
2. Hold your horses, beverage and food police.
Yes, we know that pumpkin spice lattes or those peanut M&Ms may not be the best decisions—but every now and then we want to live a little and take a risk. Just because coffee, nuts or popcorn caused pain one time doesn't mean that's always going to be the case. In the end, if what we eat and drink causes us pain, we'll be the one paying the price, not you. Please refrain from staring at us and questioning everything we put in our mouths. We get it. No need to question or reprimand us. There's already an ongoing inner dialogue 24/7 about every little decision we make and how it's going to make us feel—trust me.
3. IBD doesn't need to be the white elephant in the room. Talk about it.
If you are hesitant to bring up Crohn's and colitis with a loved one or friend, don't be. In fact, bringing it up makes us feel like what we are going through matters. Our situation feels less isolating when you communicate and articulate that you recognize we are battling a difficult disease. Especially for those of us who blog or share our struggles on social media, it always surprises me that despite all I share and my openness, so many people in my life never, ever bring up Crohn's or acknowledge I have it. That is disheartening to me. I am passionate about being a patient advocate and sharing my journey; obviously I want to talk about it.
4. Don't make us feel guilty if we need to cancel plans.
There have been countless times I made plans with friends or with dates (before getting married) that I needed to cancel because I was blindsided by symptoms. Understand that when you make plans with someone who battles IBD, the way we feel can change up to the minute we're supposed to meet. While I know that can be aggravating, you must be patient and think about what you would do if you had stabbing pains in your abdomen and couldn't stand up straight as you rushed to the bathroom. More often than not, rather than canceling, we put on a smile and pretend to feel well. So, the times we cancel, I can guarantee you it's a legit excuse and doesn't make us happy either. I've had moments where I was all excited to go out with my husband and meet friends, and he would see me walking around putting on my make-up with my pants unbuttoned, because I was in so much pain, and he had to tell me, "We're not going."
5. No need to remind us, "It could be worse."
Yes, we are well aware that a lot of people have it worse than we do and are battling terminal illnesses. At the same time, many people have it better than us. We understand the severity of our disease and that it can't be compared to someone battling stage IV cancer. But please don't try and pretend you can fathom the struggle, unless you wake up in our shoes and know what it's like to live with a chronic, invisible illness that takes management with multiple medications a day, procedures, poking and prodding and facing the unknown of what the next day brings regarding flare-ups.
6. Understand that surgery is not a cure for Crohn's.
According to the Crohn's and Colitis Foundation, unlike ulcerative colitis, Crohn's disease cannot be cured with surgery, except in some instances where only the colon, rectum and anus are affected. If the diseased portion of the intestine is removed, the inflammation can reappear adjacent to the site of the surgery, even if that part of the intestine was normal before the surgery.
The primary goals of surgery for Crohn's disease are to conserve as much bowel as possible, alleviate complications, and help the person achieve the best possible quality of life. Sure, you may go into surgical remission or be given a "fresh start," but the disease will always be a part of you.
When I had my bowel resection surgery in August 2015, they removed 18 inches of my small intestine—a decade of disease was taken from body. Of course, as I healed, I felt better and still feel a lot better now than I did before the surgery. Regardless, I still live with Crohn's every single day and those symptoms are still present quite often.
About 23 percent to 45 percent of people with ulcerative colitis and up to 75 percent of people with Crohn's disease will require surgery. As I type this, I have stabbing pains in my stomach. I felt completely fine when I started writing this.
7. Don't question our medication decisions.
So often people seem to think they have MD after their name, even if they haven't taken one medical course in their life. Yes, we are aware there are a ton of commercials on TV that list all the possible side effects for Humira, Stelara, Entyvio … you name it.
Normally, when we hear those commercials and they don't pertain to us, we may kind of laugh and wonder who in their right mind would take a medication with all those risks. For those of us with IBD, we oftentimes don't have a choice. It's a high risk with a high reward. Quality of life has to come first. Before I got pregnant with my son, there were multiple occasions where friends would question my decision to be on Humira. Once you are on a biologic and your disease is this severe, you don't have a lot of options. Don't you think the risk of new and worsening heart failure and being immune suppressed is already a worry we deal with?
8. Don't disappear when we need you most.
One of the "perks" of having IBD is that you quickly get to see who your true friends are and who has a compassionate heart. Sadly, some of the people you think you are closest to may disappear when you're in the hospital. Rather than focusing on getting better, you may feel hurt that so-and-so hasn't even called, texted or visited—even though you know they saw your post on social media about your most recent hospital stay. As a friend, if you're questioning whether you are going to bother the person or if you think it's not your place to reach out, please change your mind. It's the people who reach out when you're at your lowest point that you realize are worth your time and energy. IBD is isolating enough as it is—please be a good friend and show us some love when we're going through a flare. If you were hospitalized, would you want radio silence from every person who matters to you?
9. Don't be afraid to find humor in the struggle.
Timing is everything when it comes to humor, but don't feel like you need to be all doom and gloom with us! We are the same person we've always been, and more often than not, we may make light of the situation as a defense mechanism. I was recently on a call with fellow Crohn's and Colitis Foundation volunteers and casually introduced myself and said, "I've had one surgery, just 18 inches of intestine removed.…" I said it as a joke, and the people on the other end laughed and said "just?" because they get it. There's no need to always think of IBD as a negative. In time, we come to realize it helps define who we are.
10. Please don't push the "diet that heals" or homeopathic remedies on us.
If there was one diet that worked wonders for those of us with IBD, we'd all be on board. There would be no need for medications and tests and hospitalizations. So many people ask me, "Have you tried the FodMap diet? What about SCD? What about paleo?" The list is endless. I tried going paleo a couple of years ago and almost ended up in the hospital. If you find a diet that works for you or someone you know, that's fabulous. Unfortunately, every case of IBD is different, and there isn't one way to help "heal" us all. This can be very confusing for newly diagnosed patients and their caretakers. It can put people in harm's way if they follow your recommendation and decide they no longer need medication. Please be mindful of your words.
If you read my articles, you know I always focus on the positive and like to lift people up. My husband saw me writing this and felt it was a bit of a Debbie downer.
I apologize if you feel that way, but I hope it has the opposite impact. I hope it brings you clarity and makes a lightbulb go off so that you know how to navigate your friendships and relationships with those who battle IBD.
With Crohn's and Colitis Awareness week being in December, now is a time to bring awareness about Crohn's and ulcerative colitis; it's a time for these diseases to be in the spotlight. This month and in all the ones that follow, please be gentle with your words and be the type of support you'd want in return.
A version of this post originally appeared at Lights Camera Crohn's