10 Tips for those who DON’T have IBD

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.

  1. 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.

Apple between oranges

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.

  1. Hold your horses, Beverage and Food Police

hands-2112758_1920Yes, 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.

  1. 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.

  1. 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. IMG_0901Understand 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.

  1. 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.

  1. 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. IMG_8476The 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.

  1. 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. IMG_0234Normally 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?

  1. 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. fullsizerenderSadly, 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?

  1. 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.

  1. 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. Photo by J Elizabeth Photography www.jelizabethphotos.comI 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.

The importance of championing clinical trials with IBD

Clinical trials. When you hear or read those two words, what comes to mind? Does it make you nervous? For many in the inflammatory bowel disease community, clinical trials can be daunting. Clinical trials are research studies involving volunteers to test a new treatment option, such as a drug or medical device. If it weren’t for clinical trials, we wouldn’t have access to new treatment options. The biologic drugs many of us depend on, are available because of the people who participated in the studies to get them approved.

You can think of clinical studies as gateway to new hope. New understanding. A bright future for all of us. Before a clinical study even happens, drugs first have to be discovered, purified, detailed and tested in labs. The tests can be tailored to your disease pattern and needs. You can think of it as taking health care into your own hands. lillyLilly Stairs, a fellow IBD warrior, is the head of Patient Advocacy at Clara Health. Clara Health is focused on empowering patients to find the right clinical trial. Lilly is passionate about the cause because it hits so close to home for her.

“Clinical trials are the lifeblood of medical innovation. If it weren’t for the patients who participated in clinical trials, I wouldn’t have access to the life-saving medication that has put me in remission from my autoimmune diseases. That’s why I am dedicated to raising awareness about the power of breakthrough research. Clinical trials offer promise and hope for patients now and in the future,” said Lilly.

When it comes to finding the right clinical trial, it can be overwhelming. Brandon Pomish was blindsided by a perianal disease in November 2014  and subsequently given a Crohn’s diagnosis in November 2014. IMG_2081In 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.

“I knew there were different clinical trials and therapy options going on around the world, so I got on the computer and looked for specific clinical trials geared towards healing and curing complex perianal fistulas. A trial in Madrid, Spain, involving a pioneering stem cell procedure with a reputable hospital organization, research team, and most importantly results peaked my interest. I reached out to the authors of the study and after exchanging information and weighing the pros and cons, we decided to move forward.”

In September 2016, Brandon and his parents flew to Spain, where he underwent a liposuction procedure to collect five million stem cells. Two hours after the liposuction took place, the stem cells were injected directly into the fistulas. Brandon went back to Spain for another stem cell injection in April 2017.

One of surgeon's and lead researcher's for the European Study

Brandon with one of his surgeons in Spain.

While he has back in the States recovering, Brandon started to bleed during his Remicade infusion. He now also qualified for a clinical trial at Mayo Clinic involving simple (vs. complex) fistulas which he previously disqualified for because of his complex fistula status. He was told a skin graft would be removed and then inserted into the fistula site. Brandon woke up from surgery and was told that when the surgeon probed the fistula, it activated the stem cells that were injected in Spain and completely healed the fistula.

By taking a chance, doing his research and educating himself on the studies available to IBD patients, Brandon completely changed the course of his patient journey.

“If you’re desperate and your current treatment doesn’t seem to be improving your quality of life, you need to be proactive. Nobody knows your body like you do. You own your path to wellness and health. You reach a point where you are sick of suffering and Crohn’s begins to consume your life. Do your research, some clinical trials have higher risk, higher reward…others have lower risk, lower reward. Be your own best advocate. Be savvy, understand your condition and know what your options for treatment are,” said Brandon.

Brandon is currently at home recovering from a recent ileostomy reversal surgery that was made possible by this study. He is recovering wonderfully, and is excited to mentor people in similar situations.

Oftentimes, like in Brandon’s case, the benefits far outweigh the risks. pexels-photo-263370As 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.

“It is essential that as members of the IBD community we champion the power of research and educate fellow patients about clinical trials. Together we can empower patients with the knowledge that clinical trials are a treatment option and accelerate the pathway to breakthrough treatments and cures,” Lilly added.

pexels-photo-143654Interested 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 specific landing page on their website that identifies clinical trials for Crohn’s disease. The list offers up countless opportunities that could transform the way you take on your disease.

Rather than thinking of clinical trials as a last resort, we as IBD patients need to change our perception. Without clinical trials, we won’t get new and better treatments. Click here to check out clinical trial information from the Crohn’s and Colitis Foundation. We need to change our mindset and focus on the importance of using our stories and our journeys to gain a better understanding of IBD. Instead of worrying about the risks, think about the all the possibilities.

The dread of the next Crohn’s flare as a new mom

One of my biggest fears as a mom with Crohn’s disease is my next flare up. I know how it goes. It’s going to come out of left field. I’ll start the day feeling well—going about my business taking care of my son and then it’s going to happen. IMG_2007The 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.

I dread packing a hospital bag with the necessities. It makes my stomach turn to imagine kissing his little cheeks and handing him over to someone else as my husband races me to the emergency room. As much as I hate to think like this and don’t like to be a Debbie downer, I know there will be a time it’s going to happen. Since Reid was born almost eight months ago, I’ve told my husband that my goal is to stay out of the hospital until Reid can physically walk into the room to visit me. I know that’s a hopeful goal. It’s been 27 months since I’ve been hospitalized due to my Crohn’s. I feel like a ticking time bomb. When will the next time be?

As parents, articulating chronic illness to little ones is difficult. You want to protect them from your pain and pretend all is perfect. You don’t want them to worry or think you’re unhappy or sick. On the rough days you hide behind a smile. IMG_2005When 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 my son grows up I want him to look at me and be inspired by my strength. I want him to think of his mama as being a tough cookie. I want my injections and nightly medication to be a part of our normal routine. Something he doesn’t think twice about. I never want him to worry or wonder the next time mommy will have to go to that place that keeps her overnight. I want to make light of colonoscopy preps and blood draws and let him know that just because mommy has a disease, it doesn’t stop her from living a full life.

As a new mom, I can’t anticipate all the questions and all the emotions that will come with each passing year. What we can do as parents with chronic illness is be open and communicate. IMG_2006As 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.

As I write this and look at sweet boy on the monitor, sleeping peacefully in his crib, I am thankful for another healthy day at home. And I’ll be thankful for every single one that I get. While I dread that next flare up, I have the best reason ever to fight like hell and get back home.

Organ Donation and IBD: Setting the record straight

Are you an organ donor? For some, this may seem like a simple question, for others it’s complicated. I’ve been reading posts on social media that claim if you have inflammatory bowel disease, you are not “eligible” or able to be an organ donor.


Hanging out with my cousin Bill at an organ donation event.

This caused me to pause and question whether that is truly the case. The decision to be an organ donor was a no-brainer for me. My entire life, I’ve been inspired by my cousin, Bill, who’s a two-time heart and one-time kidney recipient. To say I’m passionate about organ donation is an understatement.

So, I ventured out to interview Dr. Gary Marklin, Chief Medical Officer, for Mid-America Transplant in St. Louis, to learn more about IBD and organ and tissue donation. As an organ procurement organization, Mid-America Transplant covers eastern Missouri, southern Illinois and northern Arkansas.

At this moment, more than 115,000 people are waiting for a life-saving phone call. Last year, a historical number of transplants ever were conducted in the U.S., at almost 34,000…but there are a lot of people who don’t receive the gift of life in time. IMG_0613Each day, about 22 people die waiting for the phone to ring. That’s about one person an hour.

When it comes to those of us with Crohn’s disease or ulcerative colitis the quality of our organs is studied at the time of donation. But, it’s key to note—this is the case for ALL donors, regardless of your medical history.

“Crohn’s and ulcerative colitis can effect organs other than the intestines, and if they are not working well, then you’re probably not able to donate that particular organ. But, in general, Crohn’s and ulcerative colitis do not exclude you from organ donation,” said Dr. Marklin.

The same goes for tissue donation. Tissue is skin, bone and corneas. Depending on where IBD is located and how it’s impacted the body, certain tissues may be excluded.

image1 (2)“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.

This led to wonder if long-term use of biologic drugs, such as Humira, makes a difference.

“The only risk biologic drugs pose for transplantation is increased risk for infections. If you’re on Humira, which caused you to contract tuberculosis, then you’re not going to be a donor. Just being on the medication itself, does not limit you from being a donor though,” Dr. Marklin explained.

So, if you battle IBD—don’t let that hold you back from signing up to be an organ donor. The only organ you definitely would not be able to donate are your intestines, and let’s be honest… that’s not a big surprise! The odds are in your favor that you’ll get to provide others with a chance at life. Every time a family or person says “no” to organ donation, on average three people do not receive the lifesaving organ transplant they need. You have the power to save up to eight lives and help heal 75 more through tissue donation.

natandbillAs 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.

If you’re hesitant—imagine your parents, siblings or best friend on their death bed, anxiously awaiting word an organ is available. Would you want their life to be cut short because someone chose not to be a donor? As people who battle IBD we know how important quality of life is, and how quickly it can be taken away. Sign up. Be a donor. Know in your heart that if there’s an accident, that your life will continue through someone else—and not just them, but all their family members and friends. Click here to enroll to be an organ donor. Click here for additional organ and tissue donation information.