How surgery helped this Crohnie live her best life

Connecting with those who battle inflammatory bowel disease over social media is cathartic and creates friendships–whether you’ve met the person or not. It’s amazing to me how quickly you can share a bond and relate to a complete stranger’s life experiences because they mirror your own. I recently connected with Samantha Rynearson of West Virginia.

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She’s a 25-year-old wife and mom who was diagnosed with Crohn’s disease at the age of 21. She recently had a bowel resection and currently takes Stelara and Imuran to keep her disease in check. This week, Samantha shares an inspiring guest post about why surgery completely changed the course of her life for the better. 

The best way I can try to describe Crohn’s disease is that it’s like an elevated version of Russian Roulette, but with food. In Russian roulette, only one of the guns holds a bullet. Prior to my surgery, for every 10 foods I ingested, eight of them caused me pain or were “triggers.” It was a game that I lived with and played daily for the past three years as I battled living with a stricture in my small intestine the size of a straw.

Let’s rewind to January 2017 – I made a News Years Resolution that I was going to lose the dreaded Prednisone weight. So, I wrote a meal plan, went shopping for healthy foods and was cutting out processed foods as much as possible. Unfortunately, four days into the New Year, I was admitted to the hospital with a small bowel obstruction. Apparently junk food from New Year’s Eve, mixed with a drastic change in diet, mixed with not being on steroids anymore – my intestines were not having it. So, nine LONG days of steroids, CT scans, bowel series, lots of morphine, and a new medicine, I was released to go home. I was told I couldn’t eat any raw fruits or veggies, nothing high in fiber and basically nothing healthy at all. No more New Year’s Resolution.

IMG_9327We tried new medications, but after eight months of no change in my small bowel, my gastroenterologist thought it was time to say goodbye to the diseased portion of my intestines. I remember the phone call from her just saying “I’m going to give this to you bluntly, you need to get them out.” At first, I was shocked, then angry that my body was failing me. I brought my husband to my surgery consultation, and I’ll never forget the look on his face as the surgeon was asking me very detailed symptom questions and I was answering them honestly. It was a look as if I had by lying to him for years. Even my husband, the person I spend every waking hour with, have been with for almost six years and since I was diagnosed, didn’t fully understand how bad my disease had gotten in the last three years.

As the time got closer to my surgery, I got more and more nervous. I know the statistics… 75 percent of Crohn’s disease patients that have surgery will need surgery again… 20 percent will have a reoccurrence of symptoms after two years, 30 percent after three years… I was second guessing myself and remember thinking “it’s fine, I can live like this…” image1 (4)As a mom and a wife, I questioned how my family would make do without me… But as surgery drew closer and I was in so much pain that I could only eat liquids and was basically confined to the fetal position, I knew it was time.

When I woke up from surgery I was in the worst pain of my entire life (YES, worse than childbirth!) It took more than two hours to get my pain to a tolerable level and I remember thinking I made the wrong decision and that I was an idiot for doing this to my body and I should have just sucked it up and dealt with the flares and the pain. But man was I wrong. Once I could tolerate food and pass it, I was released after just FOUR days in the hospital!

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Every day of my recovery, my daughter would ask to see my “boo boo.” She was super careful around me, and gave me so many kisses and hugs that I realized children really do understand more than we think. My husband was overprotective because he was so afraid something would go wrong during or after surgery and I would get so frustrated because I was only thinking of how it affected me, but in reality, it was a terrifying experience for him too.

Prior to surgery, I would eat and then pain would come. Now I eat, and I sit there waiting for the pain to start, but it doesn’t. It’s a hard concept for me to grasp. I can eat food, and not be in pain afterwards. It’s bizarre to me after three years of food = pain that it just changed by having my intestines cut out.

Now, I am almost 12 weeks post-op. I went back to work full-time after six weeks and was literally doing everything I was doing prior to my surgery and then some!!  I have so much more energy to play with my daughter. I’m able to eat food when we go out to eat and not regret it later. I feel like surgery has had a positive impact on my marriage and that I have a better relationship with my husband. I feel like my daughter is getting to know a new “fun” mommy that isn’t always laying on the couch with a heating pad. I feel like my friends don’t even know what to do when I respond to their text messages or say yes to hanging out!

Image-1Getting surgery has changed my life in just 12 weeks. I can’t even imagine how much it’s going to change my life in the next year or two. I know the statistics aren’t in my favor, but until then I will totally be living my best life with a foot less of intestine and a bigger smile on my face!

You can connect with Samantha on Instagram: @crohnicallyfabulous.

Click here to follow her blog.

“It’s hard being a sick girl in a modern world:” A review of “My Flare Lady”

Meet Kathleen Nicholls. She’s a 34-year-old from Scotland who’s battled arthritis since 2009 and Crohn’s disease since 2010. IMG_20170823_223410_970She’s not your typical patient advocate. She’s an author who uses her sense of humor to not only inspire, but also make you laugh. She says things many of us think, but won’t say. Her most recent piece of work, “My Flare Lady”, is a great compilation of advice ranging from dating with chronic illness to finding self-worth despite the hardships we face on a daily basis. Rather than having a “woe is me” attitude, she’s the complete opposite. She’s incredibly candid and her honesty is what makes her writing so intriguing.

Here are some of my favorite excerpts from the book:

“When you are told you will be ill for the remainder of your life that feeling hits you tenfold. You suddenly find you are singled out against your will. You’re the sick partner, the sick daughter, the sick Chandler of your friend group.”

“Spend time with people who buoy you. Those friends and family who make you feel good about yourself, and are generally able to maintain an optimistic outlook. Those people in your life, if you have them, who radiate positivity and don’t flood you with negative thoughts, are really a priceless balm for a stinging soul.”

“When you are sick and in love your relationship may have a chocolate box full of additional worries to factor in, but it doesn’t have to stop you and your beloved from having a joyful life together filled with hearts, flowers, and painkillers strong enough to flatten an Ox.”

“So when I take medication and I start to play-act all the symptoms it says in the booklet I’ll have against my will; it’s disappointing to say the least. I read the little pamphlet that comes with my medication mostly for a giggle. I like reading aloud the various symptoms I may well encounter; mentally crossing them off and inevitably getting round to “death” in the small print. It’s funny (albeit in a fairly dark way I grant you). But a dark sense of humor tends to fit well with a chronic illness.”

“No sign of active ‘disease’ or current symptoms may encourage a medical professional to gleefully cry ‘remission’ but many patients still experience many ongoing differing symptoms regardless, meaning they certainly don’t feel the benefit of said remission.”

“The idea that even genuine moments of joy can be tainted by the anxiety of what’s to come is disheartening to stay the least. It’s something most people don’t have to consider.”

“It’s hard being a sick girl in a modern world. Therefore, it’s of incredible importance that as women we value one another, educate each other and help one another up instead of knocking each other down. Unlike Chumbawumba we can’t always get back up again so easily.”

“When I get nervous in the hospital I remind myself I’ve been through worse, that I survived it, all of it, an that I am here for good reason. It doesn’t always make me feel joy upon joy when I’m being prodded and probed by relative strangers, but it reminds me to get my priorities in order.”

IMG_20171024_173739_449That gives you an idea of what an incredible resource this book is for women in the chronic illness community. Kathleen’s ability to share her experiences and speak to others to make a difference, inspires me to be strong in my patient journey. Though we’ve never met in person, we’ve been “friends” on Twitter, Facebook and Instagram for years. I had the chance to interview her about her latest book. Here’s what she had to say:

What inspired you to write “My Flare Lady”?

“Suffering from chronic illness can be incredibly isolating and it can be easy to get caught up in your own anxious brain, I always aim to write in a tone which feels inclusive and open, I want fellow sufferers to feel they are not alone and our shared experiences can be overcome and maybe even laughed at. I love and cherish women and in living with poor health for most of my life, I’ve always felt a kinship with women in the same rickety boat as my own. I want to inhabit a world where we pull one another up and where women (and men) can feel comfortable in being open and vulnerable with one another on their fears and experiences. It’s so important to know we are understood. “

What do you hope people take away from your book?

I hope readers can take a feeling of camaraderie, a feeling that we are in this together and that there is absolutely no shame in talking openly and honestly.

What type of response have you received from the chronic illness community?

“So far so good! The opinion of the chronic illness is so important to me, so I take away as much positive and negative feedback as I can on board. 20171129_201703People seem to enjoy the humour spattered throughout and find it to be informative and inclusive which is what I’d hoped for! This time round has been nerve wracking again so i try to only dip in and out of reading reviews for the sake of my own sanity/ego!”

Plans for future books in the works?

Yes, always! I’ve been working on a project based around the parallels between mental health and chronic illness and I hope to find more time to devote to that in 2018. I’ve also been playing around with ideas for short stories and longer-form fiction, but inevitably whatever I write always comes back to my diseased body!”

You can purchase “My Flare Lady” on Amazon. Click here to buy it, makes for a great Christmas gift—or a present for yourself. IMG_1002Kathleen is dedicated to helping others feel less alone and afraid in their fight with chronic illness. As someone who’s battled Crohn’s more than 12 years, I can tell you firsthand her words empower me to be strong. I constantly find myself nodding along while I’m reading and even laughing out loud. You can follow Kathleen on Twitter and Instagram @kathfantastic.

 

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.

bill

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.

 

Healing The Gut: How Yoga helps calm Crohn’s Disease

Yoga and Crohn’s relief. For many, the two go hand-in-hand when it comes to stress management and feeling calm. This week, I hand over the reins for Part Two of Hilary Zalla’s guest post. As you may remember, Hilary is a vocal advocate for inflammatory bowel disease and a news anchor at the CBS affiliate in Tampa Bay, Florida. She was diagnosed with Crohn’s disease 13 years ago. Since becoming a “Crohnie,” she’s come to realize how strong our IBD community is. I’ll let her take it away…

Since my diagnosis, I have always been most interested in learning how people treat their disease beyond prescribed pharmaceuticals. I’ve heard people swear by alternative therapies like acupuncture and chiropractic and diets like veganism, Paleo, and gluten-free. Whatever helps you, keep doing it! I am here to share with you how I use yoga to treat my disease.yoga

First of all, I want to start by telling you that exercise was pretty much non-existent in my life until I found yoga. I just never felt up to working out. I gave myself tons of excuses, but really I just didn’t care about my body. I had given up on it because it let me down so many times. I started practicing yoga two years ago when I realized I wouldn’t be able to continue working in television news if I didn’t start taking care of my body beyond medicine. I am so glad I did because I have been in clinical remission ever since!

Yoga has taught me how to take care of my body.  I have battled so many negative emotions since my diagnosis like denial, self-doubt, fear and embarrassment. I didn’t take care of my body for many years because I didn’t think it was worth it. I was already sick, so what good would anything do? Well, I was so wrong.

yoga4Yoga 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 made me want to take care of myself. I started eating gluten-free, dairy-free, and seeing a therapist every week for my anxiety. I also started doing more exercises like running and lifting weights.

Yoga also increases my immune system. I am on Remicade infusions every eight weeks, which lowers my immune system. Yoga helps lower the stress hormones that compromise the immune system. By linking breath and movement, we’re able to condition our lungs and respiratory tract and get blood to the organs so they function at their best. I haven’t had a cold in two years!

yoga3Goodbye anxiety and stress! For most of us living with IBD, we hold our emotions in our gut. This is why we can feel abdominal pain when we are nervous or stressed. Yoga is an easy and natural way to make sure the mind and body are in-sync. The practice allows us to relieve physical tension and relax the nervous system. This takes the strain off our intestines and can really help relieve pain. 

As you can see, yoga has so many benefits for people living with IBD.  I have fallen in love with the practice and can’t get enough of it! I am now in the process of becoming a yoga teacher so that I can help others living with chronic disease find relief. I would encourage you to visit a local yoga studio and try it out! Namaste.

Way to go, Hilary! To continue to follow Hilary’s patient journey, check out her blog: Life Outside the Lights.

Why I went public about Crohn’s disease: A Tampa Bay anchor speaks out

It’s amazing how life comes full circle. I recently connected with a news anchor in Tampa Bay who battles Crohn’s disease, she randomly works with my friend and former meteorologist.  Given my past with the news business and my patient journey–we immediately connected on social media, started emailing and chatted on the phone like we’ve been friends for a decade. I was really happy to see that Hilary Zalla, a traffic anchor and yoga buff, who appears completely healthy on the TV each day, is brave enough to share her personal story to spread awareness. One of my regrets from my decade in the TV business is that I chose to keep my battle private. These next two weeks, I am proud to share two awe-inspiring guest posts from Hilary. I’ll let her take it away…

Hi! My name is Hilary Zalla and I am a news anchor at the CBS affiliate in Tampa Bay, Florida. HilaryI was diagnosed with Crohn’s disease 13 years ago and went public about four years ago.

“How did you get comfortable sharing your disease so publicly? Are you afraid of being labeled ‘the sick news anchor?’”

I get these questions a lot from people. In all honesty, I was very nervous taking off my “perfect TV persona” mask and unveiling my real, raw truths. But it so was necessary for me and for my fellow Crohnies across the globe.

Here’s how it happened. I was only 24 years old and working morning news in Dayton, Ohio. I was just two years out of college and so proud of my career. I had credibility in my market and was known for my bubbly and outgoing on-air personality. I knew the community looked up to me.

Then, I got my worst flare-up since being diagnosed.hilary2 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.

I went into the hospital and this is where I had a breakthrough. I asked myself, “Who the heck are you trying to fool, Hilary?” “Why is it so important for you to portray a perfect life?” “Who is that helping?” The answer was simple. I wasn’t  helping anyone, least of all me. I realized the energy I was using to hide my disease on and off camera could be used to uplift myself and others. I had to accept that Crohn’s is a part of me, but it doesn’t have to define me. It is the reason I am strong and brave. It is the reason I know my body so well. Then, I realized I was blessed with a massive platform to bring awareness to this disease. What better way to use television news than to change the world one Crohnie at a time? I swallowed my pride, came to peace with my vulnerability, and when I got out of the hospital, I asked my station to sponsor my very first Take Steps Walk for Crohn’s and Colitis. This was the beginning of “Hilary’s Crohnies.”hilary3

I exposed my disease to the public for the first time that year and never looked back. Since then, I have become a public spokesperson for the Crohn’s and Colitis Foundation and an advocate for Crohn’s patients. I emcee the yearly Take Steps Walk in Tampa and share my journey on social media and television.

And guess what? The most amazing thing has happened since I came out. My viewers, their family and friends, and people from across the world started coming out, too. They shared their personal stories with me and I realized so many people are affected by IBD. Too many. We just don’t talk about it and that makes us feel alone.hilary4

So, for all you Crohnies out there, listen up! I am here to officially say, stamped online forever, I am proud to be The Sick News Anchor!

Next week, Hilary will talk about how yoga has transformed her life and helped silence her symptoms. 

Patient Education Day: Speaking from the heart

Inspirational. Resilient. Strong. Those are the first three words that come to mind when I think of the Crohn’s and Colitis community. This past weekend I had the opportunity to attend and speak at a Crohn’s and Colitis Foundation Patient Education day event in St. Louis. Sitting in a roomful of patients, doctors and caretakers—surrounded by a group of people who “get it”. A group of people who share the same struggles, triumphs and life experiences.

There’s something to be said for making connections with this close-knit community face to face, rather than over the internet or social media. We laugh together, we shed some tears together, we meet people who are complete strangers who in a matter of hours feel like close friends.

In the days leading up to the event I had drafted a speech—all about preparing for a family with Crohn’s, pregnancy and motherhood. It was a busy week, so I never had a chance to look it over. In the minutes before I took the stage I kept going back and forth in my mind about whether I wanted to bring up my speech and hold the papers in my hands or just speak off the cuff.

I brought the papers up and as soon as the microphone was handed to me, I looked out the in the crowd and saw several young kids and teenagers. In that split second, I decided my speech should be motivational for them. I talked about how Crohn’s and ulcerative colitis enable us to have incredible perspective about life. I shared details about my experience being diagnosed and how I didn’t allow my disease to rob me of my dream of being a news anchor. I talked about the importance of caretakers and having the superpowers to see which family members and friends step up to the plate when you need them the most, and which fade to the background.

Most importantly, I spoke from the heart. If you’ve battled inflammatory bowel disease for any amount of time you have a story. Your story has the power to lift up others and show them they are not alone. It’s so easy to isolate ourselves and pretend that we’re feeling fantastic, when in all actuality our insides are inflamed and constantly leaving us in pain. As I looked out in the crowd, wearing a dress, standing tall with my hair curled—looking like a completely healthy person. I said—little would you know looking at me, that this morning at 2 a.m. I was stuck in the bathroom in excruciating pain, on the brink of throwing up. Those are the moments nobody sees, that we need to talk about.

As I looked out in the crowd I saw so many people nodding, so many people crying. I talked about how my husband Bobby has been there with me every step of the way since we met in 2013. Explaining his daily efforts to make sure I am ‘ok’. I saw tears in his eyes as I shared our story. After the speech I was approached by patients, parents and doctors. I was told countless times how my genuine and heart-felt words meant so much. Each of the conversations I had made me feel overwhelmed with joy. It was such a special day and such a special experience for my family. On the way to the event, I talked with my husband about how I wish I didn’t suffer in silence for over nine years and wish I would have shared my story from the start.

I don’t want you to have the same regrets as me. I know it’s easy to hide behind your invisible illness and think people will judge you, pity you and look at your differently. But what I’ve come to find out is that it’s the complete opposite. You will feel so empowered by sharing your story and you will quickly find out how strong and incredible the IBD family truly is.

“Don’t look back”: A mother’s tips for dealing with a daunting diagnosis

Being in control. Knowing what tomorrow brings. Understanding why. Unfortunately, when it comes to inflammatory bowel disease, we don’t have those abilities or those answers. This week, a guest blog from a California mom of six girls named Cait. Her 13-year-old daughter, Natalie, was recently diagnosed with Crohn’s disease. I connected with Cait on Instagram and look up to her as a mom who’s trying to navigate her daughter and her family’s new normal.

As a mom, I always want to have the answer or know just the right thing to do to help my kids along their own path. caitSo, 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.

But here we were. Months and months of tests and researching late at night on my phone. Was it a tummy bug? Was it a parasite? Was it a food allergy surfacing? Mono? So many questions and not enough answers. The one test we all felt Natalie needed, our insurance denied us.

We could not keep watching our precious daughter fade. Something was terribly wrong. When we saw her doctor one last time in hopes of finally knowing a reason, it was still unclear and we all decided it was best to go to the Children’s hospital so this could finally be resolved. cait4

Long nights, early mornings, no sleep, tests after tests and the same questions asked over and over again. It was exhausting. I have never felt so helpless. I tried to stay strong, encouraging her, supporting her, talking to the doctors and being by her side while my husband and both sides of our families cared for our five other daughters. Our family came to visit as much as possible, but the drive was far. I sat alone with Natalie when she went for her first scope. I sat alone with the doctor and received the awful news. But I was somehow relieved in those early moments. We finally had a name for what we were dealing with. Crohn’s disease. We now had a team of people who wanted to help us manage and get her disease under control. Such relief to no longer feel alone.

There have been hard days, and really hard days and then days it seems nothing ever really happened. And although we are so new to all of this, there are some things I have been learning along the way. cait2

It’s ok to cry with them. They need to know they are not alone. I tried to stay strong, but being able to weep with her was soothing for both of us.

Keep the lines of communication open even when they are hurting and may say they don’t. Those thoughts and emotions have to be worked through. This is a tough diagnosis.

Find ways to laugh. In the hospital everything was so depressing for us. So when we got the results we made a Snapchat video to share it with everyone. Somehow it lightened the mood and helped us embrace our new reality. cait6

Soak up these moments of bonding even though we all know we would rather bond over coffee dates and shopping trips and not hospital stays and long trips to see her specialist.

Do research and don’t be afraid to go with your gut (no pun intended). You know your son/daughter better than anyone else. Respect the doctors, but don’t be afraid to ask questions and have a voice in their treatment. You are your child’s best advocate.

My biggest encouragement is this, stop looking back. As a mom I want to turn back time. I want to fix it somehow. I want to change it all. Looking back only brings unnecessary guilt, sadness and regret.

Look forward. Find things to be thankful for. Do your best to give them the brightest future and speak life over them. Cherish every moment. And help them plan their future–which can be as bright as any other child.

To follow Cait and her family’s journey, check out her blog.