As Crohn’s and Colitis Awareness week approaches (December 1-7), 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.
- Do not compare IBD to IBS.
This, above all else 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, that 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 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 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 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. 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.
There have been countless times I make plans with friends or when I used to go on dates prior to getting married, where 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 straight up as you rush to the bathroom. More often than not, rather then 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 prior to 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 body. Of course, as I healed, I felt better and still feel a lot better nowadays, then I did prior to 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 list all the possible side effects for Humira, Stelara, Entyvio… you name it. 
Normally 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 oftentimes don’t have a choice. It’s a high risk with a high reward. 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 true friends are and who has a compassionate heart. 
Sadly, the people who you think you are closest to often seem 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—even 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 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 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 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 harms 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 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 a 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.
For more information about this year’s Crohn’s and Colitis Awareness Week, click here. It’s time we all speak up. Stand up. And stand together.
Lilly Stairs, a fellow IBD warrior, is the head of Patient Advocacy at 
In the past three years, Brandon has been put under general anesthesia 20 times and undergone eight surgeries related to perianal abscesses, fistulas and fissures. Despite getting an ostomy and taking Remicade and Imuran, nothing seemed to be helping heal the fistulas. In 2016, he decided to take matters into his own hands and research options across the globe.
As a patient you may hear clinical trials are costly, while oftentimes they are no cost to the participant. Since Brandon chose to receive his care in Europe, he was responsible for everything out of pocket, but this is typically not the case. Some may say patients have a negative experience, when in all actuality, the majority of volunteers, would sign up again in a heartbeat. When you’re part of a clinical trial, you are managed much more closely than when you’re receiving typical care. For those who feel they’ve exhausted all options and have nowhere to turn, clinical trials offer hope and answers. If you’re not responding well to treatment, clinical trials enable you to give something else a shot. And the best part of all, clinical trials allow us as patients to contribute to research and get closer to a cure.
Interested in getting started? You want to determine what kind of trial you want. From types of studies, to treatment methods, to trial phases, there are a multitude of components that need to be taken into consideration. Next, you need to make sure you qualify for the study. For instance, if the study is looking for people who have never tried a biologic and you have been on Humira for years, that particular study wouldn’t be a good fit for you. Clara Health holds your proverbial hand throughout the whole process, whether it’s communicating with your physician or touching base with researchers. They have a 
The relentless and all too familiar pain will take my breath away. I’ll call my husband, frantic, scared and emotional. My mind will race. This can’t happen. I can’t leave my baby. I can’t walk out this door doubled over in pain and not know when I’m going to be back home. This flare up will be worse than any I’ve encountered in the past. This time it’s not just about me anymore. It’s about him.
When you’re hospitalized, wearing a gown, attached to an IV pole and looking less than stellar…how do you pretend? How do you protect your little ones from the unknown? This isn’t the mommy they know and love. Kids are more intuitive than we give them credit for.
As much as we want to protect our loved ones from knowing how deep our pain lies, sharing and allowing them to be a part of our patient journey is important. It’s a big part of who we are and God forbid someday they too inherit the disease, we have to set an example that it’s nothing to be ashamed of and that it doesn’t have to rob you of living a beautiful life.
Each day, about 22 people die waiting for the phone to ring. That’s about one person an hour.
“What we do with any donor—no matter what—is assess the function of every single organ. So, for instance if the kidney, lung or liver function isn’t up to par due to long-term disease process or from long-term side effects from medications, the organ will not be transplanted. The last thing we want to do is transplant an organ and have the recipient develop a disease from a transplanted organ,” said Dr. Marklin.
As someone who’s battled Crohn’s disease for more than 12 years, and as someone who’s witnessed firsthand the incredible ripple effect created by organ donation within my own family—I can’t reiterate enough, how imperative it is to be a donor.
Yoga has taught me how to accept my disease and treat my body with compassion. As I started to progress through the physical poses, I realized how strong my body really was. I formed muscle and gained energy I never knew I had. All of these changes ma
Goodbye anxiety and stress! 
I was diagnosed with Crohn’s disease 13 years ago and went public about four years ago. 
I had severe pain, bleeding, anemia, and exhaustion. One day I was standing by on camera crouching down in pain. The producer was in my ear saying “Stand by, Hilary…5, 4, 3, 2…”. I stood up fast and started talking, trying to mask the pain on my face. My bubbly and outgoing personality was hanging on by a thread. I had lost 10 pounds and viewers started to notice. My hair started falling out because I was so low on iron and nutrients. I had to cut my hair short, but tried to keep smiling.
So, when all of that seemed to crash around us in May I felt lost. I felt alone. I didn’t know which way was up. This wasn’t in my plan nor did I wish for Natalie to journey it.
I wish I could bottle up those fleeting feelings of invincibility and use them when I need them most. Because just like when you’re diagnosed with Crohn’s… it’s a part of you for the rest of your life, and so is motherhood.
I’ve had two professional massages at the spa since Reid was born and they have done wonders to relieve the stress. Massage and meditation is also beneficial when it comes to keeping stress levels low. For me, stress is my main disease trigger. I know massages can break the bank, so ask for gift cards around the holidays, for Mother’s Day or your birthday. It’s the best treat.
As far as postpartum flares I am thrilled that I’ve made it Reid’s entire life without needing to make an emergency trip to the hospital. (knock on wood!) I was also told by my pediatrician that Reid would no longer have the remnants of Humira in his system once he hit this milestone. We kept a bit of a low-profile these past six months since Humira is an immune suppressant. Reid couldn’t be healthier. Still hasn’t had a cold yet, so I chalk that up to success! It’s amazing how great it feels to just get outside and take a walk, soak in the fresh air and that time with your baby.
So, take that time for yourself. Give yourself time to get into a groove and a routine that works best for you. Then one day, whether you’re holding your baby or just changing a diaper you’ll feel this empowering epiphany come over you and you’ll think… “I got this”… and guess what, you do.
He battles a chronic, degenerative disease: Ankylosing Spondylitis (AS). This autoimmune condition is a form of arthritis that primarily affects the spine. Ricky is a writer and a registered nurse—he has the unique viewpoint of the what it’s like to serve in the medical profession and what it’s like to be in the patient’s shoes. This perspective inspired him to write a book entitled, “Taking Charge: Making Your Healthcare Appointments Work for You.” Ricky reached out to see if I would be interested in reading his book and writing a review. I gladly accepted the offer and was instantly intrigued by the subject matter. What I didn’t realize is that I would read the book cover-to-cover, in a matter of hours. The same day Ricky reached out to me about his book, I started and finished it. It was that good…all 152 pages. And let me tell you folks, seeing that I have a baby who turns six months next week…that speaks volumes!
In the book, Ricky also talks about the importance of making long-term goals and not just focusing on the present. He writes, “We’ve talked about long-term goals. Make sure they aren’t neglected for the “now.” So, if need be, interrupt the flow of the appointment and change its focus to what you both do to help long-term. Even if your long-term goal is very long-term (for instance, years). It still should be mentioned briefly at each follow-up appointment to make sure you’re still on track and it is still a relevant and appropriate goal. Your health will change over time, it’s important that your goals change with them.” This is so important for so many reasons. When I was engaged and had my bowel resection surgery, I made it clear to my doctors that I wanted to start trying for a family right after my wedding. My drug and vitamin regimen was altered with that in mind, so was the timing of colonoscopy. Having clear communication and being open about what your hopes and dreams are for the future is critical. While doctors may be able to perform miracles with their hands in the operating rooms, master magician and psychic aren’t usually on their resume.
This book will give you the confidence so many of us lack when we’re in a doctor’s appointment. By being prepared—having questions written down—and looking at our doctors as allies and teammates rather than our enemies, we have the ability to be our own greatest advocates. None of us should feel the need to prove how sick we really are. We should be able to have honest, open and mature dialogue with a person who understands our diseases on a whole different level. I’m going to leave you with a powerful quote from the book—and something we all need to keep in mind:
“Your disease, regardless of how common its prevalence, is unique. Remember this often. Healthcare shouldn’t take a one-size-fits-all approach. Don’t assume that your problems are the same as someone else’s and can be “fixed” in the same manner. Neither is true. Your problems are yours and yours alone. That’s something to respect. Celebrate your individuality. One of you is all this world can handle, because you’re awesome. Remember that often, too.”
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