THE SUMMER ISSUE
NEW CHAPTERS our hopes for the future!
ENTYVIO
NEW OPTIONS FOR TREATMENT
inspirIBD a young man’s story of WORLD IBD DAY:
HOW YOU SHOWED YOUR PRIDE
SURVIVING THE SUMMER HEAT a guide to staying & feeling fresh
bravery, determination and empowerment
GUTSY WALK Crohn’s and Colitis Canada’s biggest event
JUNE 2014
V1, ISSUE 4
JUNE 2014
SUMMER ISSUE
FEATURES + COVER STORIES:
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new chapters our hopes for companion’s future
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13
LETTER FROM THE EDITOR
inspirIBD Jacoby’s inspiring story of bravery
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16 important facts about the ENTYVIO
new treatment for IBD
6 Kristin shares how her journey to 18 summer style guide OVERCOMING FEARS
FASHOSTOMY
a j-pouch has opened her mind
CHAPTERS 9 NEW Companion magazine’s hopeful
future in print
GUTSY WALK: 11 how Rasheed made strides for
a cure for IBD
13 anINSPIRIBD inspiring story of a young man’s battle with Crohn’s
GUIDE: 19 GLAMOUR SUMMER TIPS
20 one woman’s annual event
COCKTAILS FOR A CURE
that is helping our fight
entyvio new options for IBD treatment
LETTER FROM THE EDITOR I can’t believe it’s already summer again. A year that I thought would be the worst of my life and I survived. Around June of last year, I was very sick and the option for me to keep my colon was not a possibility anymore. I was meeting with my surgeon, scheduling surgeries and trying to figure out how I was going to live my life as a 24 year old girl with an ostomy. I remember thinking to myself, “this is going to drag by, this ostomy is going to ruin my life, I would rather be sick.” What kind of thinking was that? Negative. It didn’t take me too long to figure out that that way of thinking wasn’t getting me anywhere fast and it was certainly NOT making the days, weeks, or months between my operations go by quickly either. When I gave in to seeing my surgeon (which, I didn’t really give in, it was more, when I was forced to see my surgeon) my impression was that my ostomy was only a 2 operation and 3 month stand-in for my jpouch. I remember my dad sitting on my bed trying to explain to me that 3 months out of the 80-some (hopefully) years that I live, 3 months is nothing; that I should look at the bigger picture. I remember thinking, “He’s right, but I don’t care. You won’t ever get me to have that surgery.” So, you can imagine the horror when my surgeon told me that not only was it a 3 step operation because of how sick I was, it would also be at least 9-10 months with my ostomy. I stared at him in disbelief. “So, basically, a year,” I cried, with such a malevolent attitude it would have made any wicked witch seem like a fairy princess. Dr. Strong looked at me, with all seriousness and not an ounce of pity and said, “Yes.”
STAFF
BROOKE BOGDAN EDITOR - IN - CHIEF KRISTIN WILLIAMS GRAPHIC DESIGNER EDITOR CONTRIBUTOR GAYLYN HENDERSON FASHION EDITOR CONTRIBUTOR EMMA CHAPPLE BEAUTY & LIFESTYLE EDITOR CONTRIBUTOR RASHEED CLARK EDITOR CON
CONTRIBUTORS BROOKE B. KRISTIN W. GAYLYN H. EMMA C. RASHEED C. JACOBY G.
Cue meltdown. What I didn’t realize then, or even think about then, is where I would be sitting now. A year later, at a new job I love, living in a city, meeting new friends, dating new people, all without my colon. Without constant trips to the bathroom. Without the pain or embarrassment or sheer anxiety that IBD brings.
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The main point in all of this really is that I AM sitting here. Because if I would have kept my colon or that same attitude that I had upon first meeting my surgeon, I wouldn’t be. I always say that it would be easy for any of us who have IBD, ostomies or any other kind of digestive ailment to sit in our rooms and never come out. To be angry at the world and unwilling to recognize that there is light at the end of the tunnel. Many people think that January is a time for new beginnings. Personally, I like to think of the summer as a perfect time to start over. Last summer I started my entire life over, literally. This past year has been more about growing into the person I’m supposed to be, gaining compassion for my own well-being and for others, and understanding that even when you think your life is so bad, there is always someone who has it worse. Whatever point you may be at in your illness, recovering from surgery, in the hospital getting fluids or an infusion, going to the bathroom 65 times a day, in remission, or even newly diagnosed. Never lose sight of where you will be a few days, months or a year from now. Try to consider that maybe what is happening to you right now is setting up your future for something brighter. Thanks for opening another issue of Companion. This issue is shorter, but for good reason. We are moving ahead to our brighter future, and you’re invited. Much love,
Brooke A. Bogdan Editor-in-Chief
CONNECT WITH US! companionibd@gmail.com @companionibd facebook.com/companionibd
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OVERCOMING FEARS WITH
EVERY NEW CHAPTER
By Kristin Williams GRAPHIC DESIGNER & EDITOR @SEMISWEETSTORY
This issue’s theme is new chapters. This past year for me has been nothing but continuous new chapters in my life while going through the series of surgeries to get a j-pouch. Just when I think I’ve learned everything I need to know, I undergo another surgery and have to relearn how to recover, how to deal with a new type of ostomy, what foods I can eat, etc. You go through your whole life experiencing new things on a daily basis, but I don’t think anyone can understand what a new chapter in your life can mean until you have IBD and feel like you are finally finding that road to a better life, where you can truly leave the hell you’ve been through behind you. Whether you might face it again to some extent or another, you don’t know, but you look ahead and stay positive, knowing not to take the good days for granted. My journey with these surgeries is almost over. My journey with an ostomy is almost over. I never thought I would have an ileostomy (hell, I didn’t even truly know what one WAS), and I DEFINITELY didn’t ever think I would be sitting by a pool with one (covered by high waisted bottoms, yes…I’m still a little chicken). When I got to my chair at the pool, lifted my sundress over my head and stood there in the least amount of clothes I’ve been in in public with an ostomy (or ever), a bathing suit, I held my breath. I sat down. The sound of children splashing continued. The lifeguard continued to scold misbehaving children. Men and women continued to swim with their children; continued to read their magazines. I had an ostomy and no one stared. No one knew. I had zero red flags over my head. I may not have an ostomy come August, but sitting by that pool gave me such freedom and peace of mind. It was a new chapter for me yet again, for it opened up such a new phase in my mind of the things I could do with an ostomy. My ostomy truly saved my life and let me live -- although hesitantly at first -- to the fullest extent. Co-starting this magazine with Brooke is the best thing I’ve ever done, next to having my colon removed. My eyes have been opened. Reading and sharing stories with all of you has changed my life forever, and I’m so grateful for each and every one of you that has reached out to me in some way, opening up a part of your life that can be so hard to share. I hope we can continue this magazine to keep spreading our stories and awareness to the world. Whether you’re at your lowest of lows or in remission, there is hope for all of us in the future. Here’s to a new summer, a better future and a new chapter for all of you.
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COMPANION MAGAZINE: LOOKING TO THE FUTURE
By Brooke Bogdan EDITOR-IN-CHIEF @BRKLYNBOUNCER
Since we debuted in October of last year, we have received requests for hard copies of our magazine. I started this magazine with the intention of it being a support system for those who were experiencing what I was. I had just had my colon removed, was recovering from major surgery and a horrible disease. I felt alone, confused and like my ostomy was the end of my world. What I didn’t know was that starting Companion Magazine was the best help I could not only give to others, but to myself. I met our graphic designer, Kristin, over twitter when I had posted something about having my colon removed. We were both so alike; 24 year old women who felt like their worlds were spinning out of control because of IBD. We connected immediately on so many levels and though she lives in Alabama and I in Ohio we talk every single day and know every detail about each other’s lives. I shared my idea of starting this magazine with her because I knew she also held the same passion as I for helping others and learning more about our disease and our ostomies through a positive support system. It was tough for both of us to find blogs, articles or stories that we understood, that were positive and that helped prove that IBD doesn’t have to mean you don’t live your life. We pulled our ideas together and created Companion Magazine for IBD. Since our first post date in December of 2013, right before my second surgery, we have had over 25,000 views worldwide. Kristin and I have spoken with people from all over the world who suffer with IBD. We grew our editorial staff to include Gaylyn, Emma and Rasheed, who have all proven to be extremely inspiring, kind people in the world of IBD. We also accept contributors for each issue and never have a shortage of bravery in our writers and staff. The 5 of us have worked hard spreading awareness about Companion Magazine through social media and through our hospitals, doctors and peers. What we have realized is that there are more of our readers who would love to be able to hold our magazine in their hands. The moment I knew Companion was ready for print, was just after my third surgery when an ostomy nurse whom I had never met before came into my hospital room. She told me that she wanted me to know that she had just shared Companion Magazine with one of her patients, a young girl who was scared and felt alone because of her upcoming total colectomy. The nurse told me that she handed that young girl a hard copy of our first issue of Companion and her face lit up. Creating this magazine and bringing encouragement to those of you who need it most is what Companion Magazine is all about. We will still have articles and stories online, just not full issues anymore. We are accepting advertisement and sponsorship opportunities from any and every one. Our packages are customizable, we are completely open to suggestions and do encourage them. If you or someone you know would be interested in advertising with Companion Magazine, please have them contact us at companionibd@gmail.com. To start, we will have a large quantity of issues printed and placed in willing doctors’ offices, hospitals, non-profits and anywhere else that Companion Magazine might have an impact. Subscription basis will come later when we have more of an understanding of where our readership lies. Orders for specific hard issues will be made available through our website and pricing will depend on the cost to print. We hope that you will help us to spread the word about Companion Magazine moving to print. We want to continue to make this magazine the best that it can possibly be and we couldn’t do that without your opinion or suggestions. We are hoping to have the first hard copy of Companion available for this upcoming fall. Please feel free to contact us with questions, concerns or any kind of comment, as long as it is positive!
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Bringing the IBD community closer through shared inspirational stories, informative medical articles, useful advice columns and lifestyle tips. Serves as a companion readers can look to for support, guidance and fun in their journey with inflammatory bowel disease.
With over 25,000 views all over the world since our launch in October 2013, Companion Magazine is continuing to grow. Companion Magazine brings the IBD community closer together through shared inspirational stories, informative medical articles, useful advice columns and lifestyle tips. The magazine serves as a companion readers can look to for support, guidance and fun in their journey with inflammatory bowel disease. Since our first issue, we have received consistent inquiries about how to purchase hard copies of Companion Magazine. High publishing costs have prevented us from being able to easily distribute hard copies of our magazine. With such a high demand from readers, advertisers and businesses, Companion Magazine’s editorial staff has decided to move forward with the direction of hard copy publications. Companion Magazine has an excellent following, both on social media and through our website Companionibd.com. We track our views and downloads through our online host site, issuu.com. We interact with our readers and contributors through email, social media and blog posts on companionibd.com. Advertising in Companion Magazine guarantees your product or service is being seen by the thousands of patients worldwide who are looking to find the best care they can. You can choose from any 3 of our advertisement options that will best fit your products demographic: Purple Platinum: $5,000 Full page ad in Companion Magazine in print and in the online teaser issue good for 3 months from post date . Written 500-700 word blog post on our website recommending your product or service. One tweet a day for a full week (7 days) after your issue is printed and distributed. Posted link to your website from our Facebook Posted picture of your company’s logo on our Instagram. Looking for something a little more personalized? Let us know and we will do our best to accommodate. Purple Plus: $3,000 Half page ad in published hard copy Companion Magazine. One tweet a day for a full week (7days) after your issue is printed and distributed. Posted link to your website from our Facebook. Purple Basic: $2,500 ¼ page ad in published hard copy Companion Magazine. One tweet a day for 5 days after your issue is printed and distributed. Posted link to your website from our Facebook. website: www.companionibd.com media kit: http://companionibd.com/media-kit-2013-2014/
THE GUTSY WALK: CROHN’S & COLITIS CANADA By Rasheed Clarke EDITOR @RASHEEDCLARKE
Rasheed decided to gear up his new guts and take them for a brisk walk, jog, then sprint. Here is his encounter raising money for and walking towards a cure for IBD!
When I signed up to participate in this year’s Gutsy Walk, a 5K fundraising walk benefitting Crohn’s and Colitis Canada, I did so for two reasons. One, I wanted to do something active to remind myself that even after the complicated surgeries I’ve had, I still have a relatively fit and capable body. Two, I wanted to raise funds for a charity that helped me understand my condition when I was first diagnosed with an inflammatory bowel disease. After signing up for the walk in early May, I took to Facebook and Twitter to promote my personal fundraising page, which included a rehash of my sob story in an attempt to win sympathy and donations. It seemed to work pretty well at first as a steady stream of donations came in over the first week or so. I emailed family and friends who aren’t on social media and garnered a few more donations. The support waned as time went on, and understandably so. People tune out to the same request after a while, and the people who already donated weren’t going to donate again. Still, by the time the walk rolled around on Sunday, June 8, my friends and family had chipped in over $1300 for Crohn’s and Colitis Canada. The first person to donate to my campaign was my girlfriend, Jayee. She even gave to the cause a second time when she signed up to take part in the Gutsy Walk herself on the morning of the walk at Sunnybrook Park in Toronto. Aggressive as we are, Jayee and I were not content to simply walk amidst the pack of participants, even though the Gutsy Walk is a non-competitive event. So when the walk began, we started weaving our way through the masses. Past the parents with strollers, past the couples with dogs, past the kids with painted faces. We ran through the gears and went from a stroll to a brisk walk to a jog to a sprint. In our haste, Jayee’s right foot hit an uneven patch on the asphalt path and she rolled her ankle. We stopped for a moment to assess her injury. The tough cookie she is, Jayee rubbed her ankle, gingerly put some weight back on her right foot, took a few slow steps, and kept right on walking. A little further down the path, Jayee suggested we start running again, because a young, athletic-looking couple we passed earlier was catching up to us. So we ran again – Jayee with her purse and sprained ankle, me with my backpack. We didn’t plan on running during the event, but the possibility of other people passing us and reaching the finish line before us was simply unacceptable. We ran stretches of the 5-kilometre route through Sunnybrook Park, but still took time to enjoy the journey. We took photos of the trees and the streams and the railway bridges that tower above the grass. We beat that athletic-looking couple to the finish line.
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Hells yeah we did. Because of our pace, we were amongst the first “walkers” to dig into the free food after the walk. We feasted on burgers and pizza slices, washed them down with complimentary bottles of Ensure, and finished off with pink cotton candy and a blue snow cone. We lingered around the start/finish area for a while, listening to live music and chatting with our friends from Mount Sinai Hospital, whose Gutsy Walk team raised a whopping $90,865, far and away the most by any team in Canada. I felt moderately proud of my ability to finish the walk in good time, the fact that I helped raise some money for Crohn’s and Colitis Canada, and the fact that my J-pouch held up for the entire event – I didn’t need to use the bathroom at any point during the walk. But perhaps what I got out of the Gutsy Walk more than anything else was the feeling of gratefulness for fact that I’ve connected in some way or another with so many people who were ready and willing to donate when called upon. I was really happy when a donation came in from someone who I haven’t spoken to in ages. High school and college friends who I only know now through Facebook gave to the cause. I was moved to think that people I haven’t communicated with in years, in some cases over a decade, thought enough of me to want to help. I am, of course, grateful for every donation, no matter the sum and no matter the contributor. So thank you to everyone who donated to my personal fundraising effort, and thank you to all of the volunteers, organizers, and participants in this year’s Gutsy Walk!
The Gutsy Walk took place in 59 communities across Canada on June 8, with nearly 15,000 people taking part. At the time of writing, the events collectively raised over $3 million for Crohn’s and Colitis Canada. The organization will continue to accept Gutsy Walk donations until July 2; so if you want to make a contribution, head over to gutsywalk.ca.
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INSPIRIBD: JACOBY By Jacoby G.
Throughout his life, Jacoby struggled with his health and was never sure why. His story of strength, bravery and determination is an excellent example of how powerful a positive mindset can truly be. My name is Jacoby Goodwin, I live in a small mountain town in Idaho. I am 19 old and I battle Crohn’s Disease. Ever since I can remember, food has been the enemy. People would tease me as a kid because of how little I ate. They would always say I ate like a bird, or I needed to eat more so I would grow. I was the size of a 9 year old at the age of 13. We later found out after being diagnosed that slow or stunted grow is common in children with Crohn’s. I recall having the occasional pains in my gut when I was a child, but I didn’t think anything of them, until the past 3 years when it started to get worse. I had several hospital visits all for back pain along with issues of frequent bathroom trips. The doctors basically seemed to just shrug it off, on multiple occasions with easy diagnoses of food sensitivities or lactose intolerance. When I was really young I had Giardia and Rotavirus that landed me in the hospital for several days. I was properly diagnosed but I was treated so aggressively with drugs that I developed a severe allergic reaction and had to see specialists in Boise due to complications. My gastro docs think I was probably born with Crohn’s, but it can’t be proven. I often wonder if it developed from the Giardia and Rotavirus in a year and a half period because it was after that point in my early childhood that the food issues really started for me. It was about six months after I turned eighteen when I really started to go downhill. I had several unusual episodes at school where I would turn a pasty grey and collapse with uncontrollable shakes and sometimes fall in and out of sleep. One of my most vivid memories was when I discovered blood in the toilet for the first time. I was scared, plain and simple. There was so much blood and I didn’t know what to think. I kept it a secret for about a week thinking that it would pass and that no one needed to know. It didn’t stop for that whole week and I lost a lot of blood and I was losing weight too, so I finally decided to tell my sister who convinced me to let my mom know. It got so bad one night my mom took me to the emergency room where they did their standard procedures. The ER doc came into the room and told me that I needed to get tested by a professional as soon as possible. After a colonoscopy and endoscopy, it was determined that I had a severely advanced case of Crohn’s Disease in April, 2013. They couldn’t believe how damaged and diseased my intestines were for being only 18 years old at the time. I was prescribed Pentasa to start with. When I first was prescribed the Pentasa, I always skipped days, I never wanted to take them, and really didn’t think I needed them, which was not the best decision for me to make. My life went on like that for months, all the way through my golf career as varsity captain of the men’s team in my high school, through graduation and all that accompanies that event. Then the summer was over and it was time for me to go to The University of Idaho. My mom got me settled into the dorm, said her tear-filled good-byes and that very day I became sicker than a dog. It lasted for over two months, where every day I only became worse. I only spent about one quarter at school and in that time I lost about thirty-five pounds, suffered many sleep-less nights, missed many classes, suffered from depression and would literally go days without eating. I made two or three visits to the hospital during, all for flare-ups.
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I spent one day at the University’s clinic for what I thought was a bladder infection, which was yet another misdiagnosis. It turned out to be a raging abdominal infection. I gave them a urine sample and was told that there were a large number of ketones, or acids that are made when your body begins using fat instead of carbohydrates for energy, were in my urine. My body was starving and trying to survive off of itself as a result of going days on end without food. I was just shy of dropping all the way to 100 pounds when I took my medical withdrawal from college. I had appointments with a gastroenterologist in Lewiston, Idaho who told me that if this problem wasn’t fixed soon, I could potentially die. Inside of my intestines, there was a stricture which had the power to swell and close off the whole intestine. He told me that the sooner they could get all that inflamed area out of me the better chance I would have with this disease. I had also developed a massive abdominal infection that was so painful. I stayed in the hospital for a full week after the first surgery where they drained fluids out of my surrounding abdomen and pumped me full of high powered antibiotics and they scheduled me for surgery. It was determined I was anemic, malnourished, starving, infected and diseased. On the day of surgery I laid there, reassuring myself that everything was going to be alright and that there are many people rooting for me to pull through. After the surgery, I was in a great amount of pain and was hooked up to so many different machines I wasn’t quite sure what to think. For the next week, I was supposed to take my daily walk and eat nothing but liquids/extremely soft food. I wasn’t showing any improvement that whole week. I wasn’t getting any strength back whatsoever and I had a very negative mindset. One night I was in an incredible amount of pain and stayed up all night dry heaving and crying. The doctors and nurses wouldn’t leave me alone for more than a half hour. It wasn’t until my mom and aunt came in that morning did I realize how terrible my condition had become. My eyes sockets were completely sunk, my skin was grey and I couldn’t move or speak. I was losing my hair and all my bones were sticking out of my skin. Seeing my mom and my Aunt Kim so terrified to see me in the state I was in hurt worse than any surgery or flare-up. I don’t know what happened, but by some miracle the next morning, I felt I had conquered all of it, OVER NIGHT! I woke up the next morning with color in my face, tons of energy, and I was hungry. When the doctors saw how well I was doing they told me that I would be able to slowly eat solid foods again and handed me the menu. I never would have thought that hospital French toast would be the best meal of my life still to this day. The surgeon took 14 inches of small intestine and two of the large. They had to repair or replace the terminal ileum and scrap my abdomen since the infection they thought was taken care of two weeks prior was growing inside the muscle walls. The surgeon assured my family that he had gotten it all and that I was clean as a whistle. We opted to not be as aggressive in my medication, as my gastro doctor wanted to put me back on Humira, Remicade, Pentasa and some other pre-cancer drug. While I was in the hospital after my resection surgery, my mom would read to me when it was just the two of us. She was given a book that would change our lives and the decisions on prescription drugs. “The Maker’s Diet,” by Jordan Ruben was what she would read to me. I remember asking her just to read in between my nurses and visitors. I wanted to know more about this writer who mirrored my situation so closely. It was the book that changed our mind set about food and alternative medicine. We received so many more books, an outpouring of prayers, fund-raisers to help with travel expenses and University expenses. We had visitors, pies, monetary gifts and Ensure during my recovery, but The Maker’s Diet was pivotal for us learning about essential oils. Instead of four Humira injections a month, infusions and a fist full of prescription drugs, I am using DoTerra essential oils. I make a veggie capsule filled with Frankincense, lemon, melalucea, Digest Zen and Peppermint oils. I rub them on my body also. I take shot of Aloe Vera juice sometimes and a shot of fermented pickle rind, sometimes. I use Jordan Ruben’s line of supplements: Garden of Life probiotics with live dirt strains, 5 different vitamins and supplements, a Turmeric capsule, Vitamin D and C and just one prescription drug, Pentasa (4 a day). I work out and have gained more weight than I’ve lost, I eat much healthier foods. But it’s all just a matter of trial and error right now. Some things do set me off a little and I suffer for a day or so, but for the most part I feel really good. I may never have
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regular and normal bathroom breaks and I may get tired quicker than my friends, but I’m here! I’m alive. My support system has been unreal. My grandparents, Cousin Gunnar and Aunt Kim were my salvation while at college. My little brother Jordan and my sister Mikayla were a big help during my recovery at home along with my dad and step-dad. My best buddy has IBD, so we have learned to cook good foods together. I may be a warrior of this disease but through this journey my mom was my strength, she never left my side. Not once! My mom has done so much research on Crohn’s Disease, foods, recipes, organic foods, alternative meds, journaling, she is getting certified in aroma therapy with essential oils, it’s like she has the disease herself. Every appointment she took me to, every procedure and surgery, colonoscopy, hospital visits, she was there and I love her for that! I’m blessed to be with the people who love me, and I that I get to live to see another day!
MORE ABOUT JACOBY: Hobbies include: golfing, snowboarding, camping, spinning Poi, fishing for food, Barista at The Moxie Java. He is training his first puppy, Saul and will be attending college again this fall in Boise to study Horticulture and Landscape Design. Jacoby acquired his CNA certification in health occupations his senior year in highs school and during the worst of it all at the university in order to do work study program, he became a certified Lifeguard. As sick as he was, he made it through all training and passed the requirements.
ADVICE FROM JACOBY: Talk to your parents, don’t be shy. Share issues with food, appetite, bathroom problems and frequency. Get second opinions. Get a Gastroenterologist and not a family practicioner. Seek professional help. Ask questions. Join a group. Make friends it helps with depression to visit with others that are in a similar situation. Stay away from fast food joints and fried foods. Go organic! There is help, there is hope and there has got to be a cure, someday!
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ENTYVIO By Rasheed Clarke EDITOR @RASHEEDCLARKE
A new biologic therapy, aimed at IBD sufferers who are not responding to other medications, has been improved for IBD patients in Europe and the US. Rasheed tells us what we need to know about the new medicine. On May 20th, the United States Food and Drug Administration gave the green light to Japanese pharmaceutical company Takeda to offer its Entyvio (vedolizumab) injection as a new treatment option for adults with moderate to severe ulcerative colitis or Crohn’s disease. A week later, the European Commission followed suit and approved the drug for IBD patients in Europe. Entyvio provides new hope for patients who have tried and failed to achieve remission with corticosteroids, immunomodulators, and tumor necrosis factor blocker medications. In a press release, Dr. Amy Egan, acting deputy director of the Office of Drug Evaluation III in the FDA’s Centre for Drug Evaluation and Research, said, “although there is no cure for these conditions, today’s approval provides an important new treatment option for patients who have had an inadequate response to conventional therapy to help control their symptoms.” HOW ENTYVIO WORKS Unlike some other biologic treatments – like Remicade, Humira, Cimzia, and Simponi – that target and block small proteins called tumor necrosis factors, Entyvio is classified as an integrin receptor antagonist, meaning it blocks integrin receptors. Integrin receptors are proteins located on the surface of certain cells, and they act as bridges that allow cells to interact with each other. Entyvio blocks the interaction of integrin receptors on circulating inflammatory cells with the proteins of cells in the interior wall of blood vessels. As a result, inflammatory cells cannot migrate to areas to areas of inflammation in the gastrointestinal tract. WHAT PATIENTS CAN EXPECT Two clinical trials involving approximately 900 ulcerative colitis patients revealed that a greater percentage of participants treated with Entyvio achieved and maintained clinical remission, achieved corticosteroid-free remission, and had improved appearance of the colon compared to participants given a placebo. Over the course of three clinical trials, approximately 1500 Crohn’s disease patients were studied. A greater percentage of participants given Entyvio achieved clinical remission and corticosteroid-free remission. The Entyvio dose regime is 300 mg administered intravenously over the course of about 30 minutes at zero, two, and six weeks, then every eight weeks thereafter. RISKS AND SIDE EFFECTS The most common side effects reported in Entyvio’s clinical trials were headaches, joint pain, nausea, and fever. More serious side effects linked to Entyvio include serious infections, hypersensitivity and infusion-related reactions, and hepatotoxicity (liver damage). Another type of integrin receptor antagonist has been linked to progressive multifocal leukoencephalopathy (PML), a rare and often fatal infection of the nervous system. PML is caused by a virus, and typically only occurs in patients with weakened immune systems. Although there were no cases of PML indentified in Entyvio’s clinical trial participants, the risk of PML in patients taking Entyvio remains uncertain. In its press release, the FDA advised healthcare professionals to closely monitor patients on Entyvio for new or worsening neurologic symptoms.
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FASHOSTOMY:
BEAUTIFUL SUMMER FASHION
By Gaylyn Henderson FASHION EDITOR @GUTLESSGLAMOUR As the weather warms up and clothes start to shed that can bring on insecurities when dealing with IBD. You may have past surgery scars that you may not feel comfortable showing. You may have other scars brought on by other manifestations of IBD. And probably the biggest insecurity of all is the overall sentiment of not feeling glamorous (if you will) because of the nature of the disease. When most people are enjoying barbecues, pool parties, beach trips. We are worrying what can I eat at this barbecue; can I even eat at this barbecue? What will happen if I eat? And if you have an ostomy you may be wondering, “What can I wear to blend in and not stick out like a sore thumb at a pool party and/or at the beach?” Have no fear! It can be done. Living with IBD does not have to restrict your enjoyment on life and definitely shouldn’t restrict you of enjoying the beautiful summer weather. Yes, sometimes it is inevitable that we will be cooped up in the house because of pain and/or a flare. But when you can get out and enjoy the summer weather! Take it all in! After all, we have IBD, we need the sun, and we need Vitamin D! Easy summer dressing is soft silhouettes, lightweight layers, flowy tops and loose pants. Twopiece outfits are a popular trend for the summer in graphic prints and bold colors. You can also make a statement on the beach and/or at the pool. Bandage swimwear is HOT this season. High-waist swimwear is in, and I don’t foresee that trend going anywhere anytime soon. As I have said before, a one-piece bathing suit will never go out of style. Showing less is always more. I am actually seeing more and more one-piece swimwear on the beach and at the pool. So if you are not comfortable wearing a two piece swimsuit you can opt for a one-piece. I will say this, simply because I receive a lot of inquiries about having an ostomy and swimwear. If you have an ostomy, chances are you will see your ostomy in whatever you wear. Yes, it is possible to conceal it, but sometimes you may not be able to conceal it completely. At some point you just have to decide that you don’t care. And my hope is that you become comfortable in your own skin in your own time. Fashion is being able to wear what you want and being comfortable and confident. Experiment with different pieces see what fits you and your personality best. Blending in isn’t always in style. There is no need to always fit in with the crowd. Be the crowd!
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GLAMOUR GUIDE: SUMMER SURVIVING THE HEAT
By Emma Chapple BEAUTY & LIFESTYLE EDITOR @EMMA_CHAPPLE It’s my favourite time of year – summer! But with summer comes a whole new slew of problems. Fear not – I have the solutions! It’s a known fact for anyone on the East Coast that summertime = humidity. It’s a known fact for anyone with an ostomy that humidity = leaks. And lets face it: an ostomy leak is far from glamorous. This month’s Glamour Guide starts in the bedroom. Before you jump to conclusions, I’m talking pajamas! Sleeping in the sticky heat can lead to a sticky ostomy situation – but it all starts with the PJ’s you wear. In the summer months, boyshorts and boxers are my best friend. Light material and not too tight; it’s the perfect pajama. I love to get pretty pairs at Victoria’s Secret and Gap Body. I don’t know about you, but oversized t-shirts are just not my thing. I don’t like being swallowed up by masses of fabric. Instead, I opt for camisoles that are easily washable. After all, what girl doesn’t like sleeping in a little lace? When I’m sleeping in shorts, I want my legs to be as smooth as possible! When I was really sick, I noticed my skin dried out really quickly. The best moisturizer I can recommend for dry skin is a classic. The Body Shop’s olive body butter is fast acting and effective. It also feels super smooth on your skin – so you won’t feel sticky when you sleep! If olive isn’t your thing, try Brazil nut! Same silky feel, but with a sweet toffee-like scent! Speaking of skin, you’ve got to protect it! I’ve learned the hard way that immune-suppressing meds like Imuran, methotrexate and countless others will make your skin super-sensitive to the sun. Remember to apply (and re-apply) sunscreen. My favourite brand is Hawaiian Tropic – it’s lightweight but still protects against the sun’s rays. Don’t forget your face, either! Neutrogena has a great oil-free moisturizer with SPF. Add it into your usual makeup routine and keep your skin beautiful. For extra face protection, I use Physicians Formula Mineral Wear Airbrushing Loose Powder. It covers all those little imperfections without breaking me out, and safeguards against sun damage. I’m all about those multi-tasking products! But what good is sunscreen if you can’t go to the beach? The word “swimsuit” usually strikes fear into the heart of anyone with an ostomy – but it doesn’t have to. I typically play it safe and stick to one-pieces. I always look for suits that have gathered fabric – they’ll hide all those things you don’t want anyone to see! Pin-up style swimsuits are all the rage, and perfect for ostomies. Old Navy has some cute styles, but I’ve also found some of my favourites at local boutiques in my city. Check out your downtown and see what it has to offer! Don’t be afraid of the heat and humidity! All it takes it a little extra care – and a few of my favourite things – to enjoy the summer!
2ND ANNUAL GUTLESS & GLAMOROUS PRESENTS:
“COCKTAILS FOR A CURE” By Gaylyn Henderson FASHION EDITOR @GUTLESSGLAMOUR Last year my CCFA Take Steps for Crohn’s and Colitis Walk Team and I decided we wanted to do something different to raise funds. Out of this idea came, “Cocktails for a Cure!”. Cocktails for a Cure is an event to raise money and awareness about Inflammatory Bowel Disease. I have wonderful partners that make this event possible, Tongue and Groove Atlanta and one of my biggest supporters, Jamail Larkins. During the event I have a raffle and silent auction. I also use the opportunity to educate participants about the disease; I have an IBD Trivia Game in which the winner wins a prize! I have questions such as: “What does IBD stand for?” “What are two common diseases classified as IBD?” “What types of medications are used to treat IBD?” I basically give an IBD pop quiz. But it is all in good fun! It is an enjoyable atmosphere where young and old come together have fun, learn about IBD, and at the same time raise critical funds all for a great cause. Cocktails for a Cure is now an annual event. Each year it is a weekend that brings friends and family together to embrace an important cause. It is an opportunity to make a powerful statement and a real difference for those living with IBD and to bring awareness to these debilitating diseases. Every dollar raised brings us closer to a world free of IBD.
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