Living with inflammatory bowel disease: how to talk about IBD
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Living with inflammatory bowel disease: how to talk about IBD
Talking about diarrhea and blood in stools are not usual topics for lunch at the pub. But, if your mate has inflammatory bowel disease, why not put them on the table. And when she is tucking into another slice of pizza, why not interrogate her about her dietary choices? And while you’re at it, remove the glass of beer from her hand and stop her ordering dessert and coffee? Nothing speaks friendship to your mate more than being a member of the “food police.”
Does this conversation sound absurd? Perhaps. Just a little. But it isn’t too far from the true experiences of people living with inflammatory bowel disease. In this article, Natalie (Sparacio) Hayden, a former TV news anchor living in St. Louis, shares her tips for talking about inflammatory bowel disease with those who don’t have the disease.
Living with inflammatory bowel disease: ten tips on how to talk about IBD with those people who simply don’t get it
Do not compare Inflammatory Bowel Disease (IBD) to Irritable Bowel Syndrome (IBS)
Above all else, don’t compare IBD to IBS. It is aggravating and makes those of us who battle Crohn’s and Colitis cringe and roll our eyes, whether we are doing 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, which wreaks havoc and causes inflammation of the GI tract—which 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 IBS is a walk in the park, but it’s on a different playing field.
Hold your horses, Beverage and Food Police
Yes, we know that Pumpkin Spice lattes or those peanut M&M’s may not be the best decisions—but 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 every time we put food 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.
IBD doesn’t need to be the 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. It makes us feel like what we are going through matters. By communicating and articulating that you recognize we are battling a difficult disease it doesn’t make our situation feel so isolating. 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 like to pretend that I don’t have Crohn’s and never, ever, bring it up. If anything that is disheartening to me. I am passionate about being a patient advocate and sharing my journey; obviously, I want to talk about it.
Don’t make us feel guilty if we need to cancel plans.
Living with inflammatory bowel disease means there have been countless times I make plans with friends, or when I used to go on dates before getting married, where I needed to cancel because symptoms blindsided me. 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 straight up as you rush to the bathroom.
More often than not, rather than canceling we put a smile on 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 my make up on with my pants unbuttoned because I was in so much pain and he had to tell me—we’re not going.
No need to remind us “it could be worse.”
Yes, we are well aware that a lot of people have it worse than us 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, before 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—please don’t try and pretend you can fathom the struggle.
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 to help the patient achieve the best possible quality of life.
Sure, you may go into surgical remission or be given a “fresh start,” but that 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 the body. Of course, as I healed, I felt better and still feel a lot better nowadays, then I did before the surgery.
Regardless, I live with Crohn’s every day, and those symptoms are still present quite often. About 23-45 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.
Questioning 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 lists all the possible side effects of Humira, Stelara, Entyvio… you name it. Typically when we hear those commercials, if 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 often don’t have a choice.
It’s a high risk with a high reward. Living with inflammatory bowel disease means our quality of life has to come first. I know 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 whole 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 as it is?
Fading to the background and disappearing when we need you most.
One of the “perks” of having IBD is that you quickly get to see who your real friends are and who has a compassionate heart. Sadly, the people who you think you are closest to seem often to disappear when you’re in the hospital. Rather than focusing on getting better, your mind may race, and you may feel hurt that so and so hasn’t even called, texted or visited— also though you know they saw your post on social media about your most recent hospital stay.
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 mindset. 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?
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 the people we become.
Please don’t push the “diet that heals,” homeopathic remedies on us
If there were 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 inquire and ask, “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 single case of IBD is different and there isn’t one way to help “heal” us all. If anything, 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 think that way, but I hope it has the opposite impact. I hope it brings you clarity and that it made a light bulb go off so that you know how to navigate your friendships and relationships with those who battle IBD. This week is a time to bring awareness about Crohn’s and ulcerative colitis. It’s time for these diseases to be in the spotlight. This week, and all that follows, please be gentle with your words and be the type of support you’d want in return.
Natalie (Sparacio) Hayden
Natalie (Sparacio) Hayden is an advocate for those battling inflammatory bowel disease. A chronic illness doesn’t have to dull your sparkle.