There for Them: Why AbbVie’s new campaign is far from shameful

January 11, 2018January 12, 201813 Comments

I was cuddling my nine-month-old son on the couch when this commercial came across the TV. Before you continue reading, please click the link and watch.

Somber music played and as the one minute clip unfolded, I knew within seconds it was about inflammatory bowel disease…even though there were no words. The imagery, facial expressions and moments hit close to home. I was immediately at a loss for words. But in a good way. I’ve been those people in that commercial. I’ve witnessed family members look at me sympathetically as I excuse myself from the room. I’ve held my stomach and grimaced in pain, doing all I can not to miss a moment of a social gathering. I was recently at the movie theater with my husband, gazing with jealousy at people who could eat popcorn…willing myself not to buy any.

AbbVie is getting mixed reviews about their latest campaign. Some are blasting it on social media calling it “shameful”, “ridiculous”, “a guilt trip”, “disgusting”… the list goes on. To be quite honest, I’m shocked. As a mom who’s battled Crohn’s disease for almost 13 years, this is the first time I’ve seen a commercial about IBD and related to it 100 percent. This isn’t some ploy to try and make people feel guilty for their condition. It’s the reality of what life is like for IBD families. Unless you personally battle IBD or your family member does, you should be hesitant to spout off and share your opinion, as you can’t claim to know what goes on behind closed doors when the illness doesn’t need to be invisible anymore.

This commercial isn’t about making those with chronic illness feel poorly about themselves or guilty about their condition. Rather it’s bringing the truth to the forefront, for all to see. Every other big pharma ad out there shows some picturesque portrayal of someone running off a field, walking on a boardwalk or hiking up a mountain. Sure those with IBD can do those things, but that’s the power of IBD being an invisible illness. We can do those things, with a smile, even if and when we’re hurting inside.

I’ve been on Humira almost 10 years. I don’t need to be sold on the drug. But this campaign means the world to me. It represents what my parents, husband and son endure by my side. This disease impacts more than just the patient. It’s a family affair. When my son is old enough I want him to be empowered by my strength, but able to empathize with my struggles. Thank you, AbbVie for recognizing this and giving the world an inside look at the IBD patient and family experience. The commercial ends with “To be continued”… I can’t wait to see what’s next.

5 Tips for dealing with grief while battling IBD

January 8, 2018January 8, 20182 Comments

Grief and inflammatory bowel disease. They don’t mix well. I can still remember getting a phone call in September 2012 that my grandma had been hospitalized, that night…I was in the ER, doubled over in pain.

When those close to me are in harms way, I have a difficult time compartmentalizing my stress and worry and not allowing it to impact my Crohn’s disease.

On December 22, a day before I was supposed to see my Grandma and days before Christmas…she passed away. I wasn’t able to say goodbye in person, but my mom put me on speaker phone and I was able to tell her how much I loved her and that it was “ok” to go to heaven. I told her to be my son’s guardian angel and to always give us signs that she’s with us. Through lots of tears, I told her what an incredible grandmother she was and what she meant to me. Minutes later, after my call, she died.

It pains me to write and to say those dreadful words. I have never been able to handle the thought of life without her. It’s overwhelming not to have my grandma here to talk with all the time, visit, share the holidays with and I’m heartbroken that she’ll never get to see Reid grow up. I’m also scared about dealing with this major loss and having it throw me into a tailspin. The last thing she would ever want, is for me to be sick. Each hospitalization, each flare, each setback, always hurt her heart. She hated to hear of any complications or issues. So, I know I need to be strong and reign this in…in her honor.

What can we do in times of extreme grief when we live with a disease that tends to ignite in a flare when stress or emotions are out of whack? What can do we do find calmness when all we want to do is scream to the heavens in anguish? What can we do when we know we have to go on and be healthy for our families, but struggle to manage our IBD—even with a combination of strong medications?

I’m writing this for both you—and for me (to be quite honest). I don’t have all the answers, but since being diagnosed in July 2005, I’ve experienced my fair share of heartbreak and stress. Here are five tips to take to heart when you’re going through something overwhelming.

Be proactive. Sure, many of life’s hardships come without notice…but, that’s not always the case. My grandmother was diagnosed with lung cancer in September and was told she had a few months to live. I knew this was the inevitable, but that doesn’t make it any easier. Each visit and each moment we shared together these last few months, helped me come to terms with what was to come. I’ve had good days and bad…emotions are funny like that. Something will hit you—and you’ll cry from a memory and then other times you’ll laugh at something you recall. Hold on tight to the good times and the good memories.
Deep breathing, meditation, warm showers. Exercise. You need to shut it off every day. Whether it’s for a minute or an hour. Take time to clear your mind—think of nothing…just focus on your breathing. This will do wonders for you. When I feel my symptoms start to kick in, I constantly remind myself to take deep breaths in and out, it helps so much. Go for a walk, go for a run, shoot hoops—do whatever it takes to release that negative energy and pain.
Communicate with your support network. One of the worst things we can do is bottle up our emotions and deal with the pain internally. If you need to cry, cry. If you need a shoulder to cry on, hug those close to you. If you need to snuggle your dog or your baby longer, do it. You are not in this alone. We’ve all lost someone close to us. We all know how painful it is to experience the death of a loved one. Share your memories, make your loved one’s memory eternal.
Think about what your loved one would want. Chances are, this person knew firsthand what a struggle life with IBD is. The last thing they would want is for you to be in pain, in the hospital or needing medical intervention. Be strong for them. Think about what they would tell you if you could hear their words as they watch over you. Find comfort knowing that they are with you, just in a different way. Look for the signs they may give you. My college friends recently came to town. One of the signs my friend gets from her mom are white feathers. She had just told us earlier that day. That night, at dinner, we sat down…what was over our shoulder, right next to our table…a Christmas tree made out of white feathers. We knew she was with us. Hold those signs close to your heart.
If you sense a flare is brewing, don’t put it on the backburner. Earlier in my patient journey I would wait until the last possible moment to go to the hospital. This is not smart. Nip that shit in the bud. You know your body, don’t try and be a super hero. The longer you wait to seek help, the worse it’s going to get. Recognize when handling your symptoms by laying on a couch, eating a liquid diet and taking pain pills isn’t going to cut it. You don’t need to be a martyr.

Handling grief is never easy, coupled with IBD it can be unbearable at times. Take time for you. Do what you need to do to heal and find comfort in your loved ones’ memories.

Wishing you a very merry, healthy Christmas and New Year

December 26, 2017December 26, 20171 Comment

Hope everyone had a wonderful Christmas! Sorry about missing my normal Monday post– this holiday season has been bittersweet. My grandmother passed away December 22. She and I were extremely close and it still feels surreal that she is no longer on this earth. Stay tuned for a blog post after the New Year about handling grief while battling IBD.

In the meantime, I thought I would share some holiday cheer from my family to yours. Wishing you a healthy, happy, flare-free year ahead! Thanks for all the love and support you send my way, all year long.

Bile Acid Malabsorption and Crohn’s disease

December 18, 20173 Comments

Urgency and visits to the bathroom. Not a topic of conversation anyone prefers to talk about. If anything, it’s taboo and people tend to shy away from the subject, especially those who don’t have inflammatory bowel disease. While IBD is so much more than a “bathroom disease”, those of us with Crohn’s disease and ulcerative colitis tend to spend a lot more time on the porcelain throne than others.

If you’re like me, and have had surgery that involved the removal of your small intestine and part of your colon, it’s commonplace for people to have around three to five loose stools a day. Our bodies just don’t have the proper parts to absorb and digest nutrients like others. I was surprised to find out from my GI that going that many times, is par for the course after bowel resection surgery.

When I visited my GI for a routine appointment last week, she told me those with IBD who have surgery oftentimes have an “issue” called Bile Acid Malabsorption (BAM). BAM causes chronic diarrhea that results from your body producing too much bile acid (or bile salt).

In my case—and for anyone else who has the last part of their small intestine removed…our bodies are unable to absorb bile salt. Bile salts help food get digested as it travels through the small bowel. If you’re like me and don’t have your terminal ileum or ileocecal valve—or if it’s diseased, too much bile salt reaches the colon. Our bodies then send water to the colon, which causes diarrhea.

My doctor recommended I start taking Colestipol as needed. This medication is typically a cholesterol medication, but can be used by Crohn’s patients as a bile acid sequestrant. By taking one pill prior to eating each meal, it helps bind bile acids in the intestines and can prevent the need to go make a mad dash for the bathroom immediately after eating.

I had my small bowel resection in August 2015, this is the first I’ve heard of BAM. I wanted to share this knowledge with you, in case you’ve been overwhelmed with the feeling of being tethered to the bathroom at inopportune times. I’ve only been taking Colestipol before dinner for a few days, but it’s given me peace of mind and comfort already. I wasn’t thrilled to add another pill to my patient repertoire and daily regimen (it’s a horse pill!), but this has the ability to be a game-changer.

Obviously, I’m not a doctor. But, if you have Crohn’s in your small intestine, have had a resection and experience several trips to the bathroom a day, inquire about taking a bile acid pill. See if it can help improve your quality of life, too.

How surgery helped this Crohnie live her best life

December 11, 2017December 11, 2017Leave a comment

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.

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.

We 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…” 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!

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!

Getting 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”

December 4, 2017Leave a comment

Meet Kathleen Nicholls. She’s a 34-year-old from Scotland who’s battled arthritis since 2009 and Crohn’s disease since 2010. She’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.”

That 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. People 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. Kathleen 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

November 27, 2017November 27, 20178 Comments

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.

The importance of championing clinical trials with IBD

November 20, 2017November 20, 2017Leave a comment

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. Lilly 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. 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.

“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. 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.

“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.

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 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

November 13, 2017Leave a comment

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. 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.

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. 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 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. 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.

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

November 6, 2017November 6, 20177 Comments

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. Each 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.

“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.

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.

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.

lights camera crohn's

an unobstructed view

Category: Uncategorized