THE SPRING ISSUE
INTO THE SUN
inspiring stories from those who finally found their voice with IBD
BREAK IBD & THE SUN
TREATMENT FOR IBD
advice from a 4th year medical student and Crohn’s patient
THE INTENSE INTESTINES
GET YOUR BELLY OUT
the campaign that took Twitter by storm overnight
V1, ISSUE 3
APRIL 2014 SPRING ISSUE
FEATURES + COVER STORIES:
stepping into the sun inspiring stories full of courage
LETTER FROM THE EDITOR
get your belly out a new campaign to raise awareness
22 how you can still enjoy life SPRING BREAK
sun with IBD & an ostomy
INTO THE SUN FEATURE FOUNDATION 3 STEPPING 23 IBD’ers share the stories of THE INTENSE INTESTINES
how they opened up
TREATMENT LOST COLON: 13 IBD 26 lessons learned by a woman a 5th year medical student and
Crohn’s patient gives advice
that brought her gratitude
16 how & who the campaign got
28 spring style guide
IBD LIFESTYLE 18 diet, recipe & fitness advice
GUIDE: 30 GLAMOUR SPRING TIPS
GET YOUR BELLY OUT
involved to raise awareness
spring break enjoying life with an ostomy
LETTER FROM THE EDITOR Happy Spring! It’s been a tough and busy one for me. I finally had my last surgery on February 24th, so I am no longer with ostomy. I can’t believe how fast the time went between my first and final surgery. Sitting in my surgeon’s office on the day I found out I needed to have surgery I felt like it would be an eternity of hell and that I would never see another day. I hated him, hated UC, hated everything. What I didn’t realize is that my life was given a new beginning. Just like spring breaks from winters harsh temperatures and conditions and promises bright sunshiny days again. A chance for the flowers, and for you, to blossom into something beautiful. Though sometimes you may find it difficult to come out and be honest with how tough living with inflammatory bowel disease can really be, we are here to listen. This issue I wanted to make sure that we included lots of stories of people, “Stepping into the Sun,” and sharing their harshest memories with their IBD and how they came out of those shadows. When my colitis was at its worst and surgery was inevitable, I was embarrassed and in denial about what the future really held for me. Was I really subject to living a life in pain and uncertainty of when my disease would strike back? That answer was no. I didn’t understand at the time that people don’t spend their lives with IBD walking around in misery. You aren’t supposed to at least. Open yourself up to opportunities that might not only brighten your day, but your life. Only you can decide how you deal with your diagnosis. You can choose to be negative and walk around with a cloud over your head for all of time, or you can blossom and let the sun light and the hope for remission and to be disease free change your gloomy outlook. Don’t ever let anyone make you feel like your battle isn’t tough. But also don’t let yourself trick your mind into staying in the dark. Happy spring!
Brooke A. Bogdan
BROOKE BOGDAN EDITOR - IN - CHIEF KRISTIN WILLIAMS GRAPHIC DESIGNER EDITOR CONTRIBUTOR
CONTRIBUTORS LEAH S. CARRIE M. VALENTINA S. JANENA M. AMBER E. JEFF L. LAURA ALEXIS B. BRANDON W. MICHELLE G. BRIAN G. GAYLYN H. EMMA C. LOIS F.
CONNECT WITH US! firstname.lastname@example.org @companionibd facebook.com/companionibd
STEPPING INTO THE SUN Having IBD means dealing with the stigmas that come with it. For some, it’s no problem to be outgoing. For many of us, however, talking about it with people you know is incredibly hard. These IBDer’s blossom, come out of the shadows and share their struggle in order to brighten their lives and others who may be suffering silently.
Ulcerative Colitis: a Confession @UC_girl2008
“My name’s Laura and I have Ulcerative Colitis.” Writing down that simple statement makes it seem so easy. This is me and this is my illness. This is the thing that has caused me to miss work, cancel plans with friends, and spend far too much time searching for the nearest toilet. Despite its impact on my day-to-day life, telling people I have Ulcerative Colitis (UC) hasn’t been as easy as that simple statement makes it seem. Revealing to people you have a life long illness, especially one that involves talking about bowels and toilet habits and poo can be awkward at best, and utterly embarrassing at worst. I’ve always been a fiercely independent but shy person, someone that tends to keep her feelings well guarded, so letting people in on my secret illness is something I’ve struggled with. To explain myself clearly I think I need to go back to the beginning of my UC story. I was diagnosed aged 23 in the May of 2008 following a colonoscopy. Ulcerative Colitis was already present in my family so unlike a lot of new patients, I had heard of UC, I was familiar with its symptoms, and I was aware that there wasn’t a cure. I remember very clearly that when I was first diagnosed, I didn’t think much of it. I wasn’t worried that my life was suddenly going to be different or difficult and looking back now, I realize the single reason why I felt this way – I went into remission! Not long after my diagnosis, I was prescribed Asacol, it worked and I became symptom free for the next 4 years! I worked crazy hours, I ate and drank what I wanted, and I went about life not even thinking about Ulcerative Colitis. During my “remission years” as I like to call them, very few people knew I had UC. Apart from my family and two close friends, I didn’t tell anyone. At this time, not telling people had nothing to do with not wanting to talk about it, it was simply because my UC wasn’t impacting my life in any adverse way.
All this started to change in March 2012. I was living in New York at the time and out of nowhere a UC flare started that just kept going and going. I’d experienced mini flares that had lasted a week or two at most but this was different. After four weeks of increasing symptoms (daily blood lose, urgency, abdominal pain, and increasing fatigue) I decided it was time to get some help. There was just one problem – I was in New York! I had health insurance through my work but I had no idea how the U.S health system worked (I still don’t!) and I wasn’t sure if I was covered for a pre-existing condition. I emailed my IBD Nurse back in the U.K to let her know what was happening and as I was due to fly home for a holiday in a further two weeks I decided to hang on until I was back in the U.K before seeing my consultant. I managed to find my original email and the last lines were: “Should I try and see a doctor here in NY before I fly home? I am a little nervous about the journey itself if I have a bad day that day.” In truth I was more than a little nervous – I was dreading sitting on a plane for 6 hours knowing I wouldn’t be allowed to use the toilet if the fasten seatbelt sign came on! The things we UCers think about. To make a long story short(er), this flare was to become the one that never truly ended and as things progressed, my Ulcerative Colitis started leaving me with little choice when it came to telling people I was ill. Once I got back to the U.K I was started on Prednisolone steroids and signed off work for 3 weeks – I couldn’t be absent from work for that long without coming clean to my bosses about what was going on so they became the first two people outside of family and close friends who I had to “come out of the UC closet” to. My difficultly in explaining to people about my UC doesn’t come from a lack of understanding about the condition. Through personal experience, conversations with medical professionals and many hours doing my own reading, I feel I have a pretty solid base of knowledge on UC. Despite this, I am ashamed to say I have been somewhat embarrassed when facing the reality of telling people face-to-face what having UC actually means. Multiple bowel movements, blood, and pain aren’t the happiest of conversation topics and certainly not ones you want to bring up over dinner! There are two major factors that have contributed to my difficultly in telling people about my illness. The first is its invisibility. With no obvious outward signs of UC, I became very good at hiding it! Unlike many patients I didn’t suffer with the “moon face” side effect of steroids. If anything my weight loss became the thing that some people started to notice. The other factor is the lack of awareness or understanding of the condition. Outside of patients, patients families and GI/IBD professionals many people seem to have no idea what UC is and how much it can affect your daily life. When I had to tell my bosses at work, neither of them had heard of Ulcerative Colitis or Crohn’s or IBD. At the time, I did my best to explain it by using a comparison to Asthma. This may sound a little odd but Asthma has similarities to UC in that it is a chronic condition that involves inflammation – so I said something like: “Just like Asthma causes inflammation to the airways, UC causes inflammation to the large intestine and when it is triggered you have what are called ‘flare ups’ of symptoms similar to when a person has an asthma attack.” This was a simplified way to put things but it worked to get the basic principle across and make it clear that UC is an ongoing condition. I didn’t want to give the wrong impression that I would go on a course of drugs and everything would be fixed (even if that was exactly what I wanted to happen!). I found it more than a little awkward trying to explain the battle that what was happening within my body so I avoided talking about the embarrassing toilet related symptoms and said that I was trying new treatments and I hoped to be back in remission soon. I have a terrible habit of playing down my feelings or how serious things may be in relation to my health. “I’m fine” became a standard answer even when I felt awful. As the months went by and the flare continued I gradually started letting others in on my illness. I still kept it to closer friends but every time I let someone new know it was like a giant weight was being lifted. After eight courses of steroids, attempts to treat my UC with immunosuppressant drugs (azathioprine, 6-MP, cyclosporin), and a three week hospitalization, I finally went through with surgery in November 2013. My never-ending flare was put to rest with the removal of my colon and physically I feel better now than at any point since the flare up of my symptoms in March 2012. It has been two years of physical and emotional struggle, feeling good during periods of steroid induced remission and then terrible once the steroids stopped. I invested much hope in each new treatment that I tried and I strongly resisted surgery until it became a case of ‘when’ and not ‘if’. To this day there are still two groups of people that don’t know about my UC. One is work colleagues: Aside from those I had to tell, the majority of my colleagues only know I have been ill but have no idea what with. Two is Facebook: I think most people have Facebook friends made up of a collective of people from those you see regularly through to those you may not have seen for years and as such I am still to find the courage to let all these people in on my illness – what can I say, I’m a coward. But I am trying my best. One step at a time. I think it’s much harder to tell people you already know and who aren’t familiar with UC. Last year I joined a Crohn’s and Colitis support group and I found it relatively easy to tell my story to complete strangers. Knowing they understood
what it meant to have IBD made it easier as they wouldn’t make snap judgments or jump to incorrect conclusions. Ultimately, talking to people who “get it”, whether they are medical professionals or other patients can be a great help. To coincide with the release of this issue of Companion, I am planning on changing my twitter avatar (@ucGirl_2008). Why? In October last year I joined twitter as a way to connect with other IBDers. Up until now my picture has been a shadow of me waving. On the release of this issue it will change to a picture of me. My journey with Ulcerative Colitis has made me passionate about raising awareness of IBD and how can I expect to do that without first coming out from behind my shadow to say: “My name’s Laura and I have Ulcerative Colitis.”
A Voice Against the Stigma @1BravePrincess
I’ve been living with ulcerative colitis since 2011. Like many of you, this illness totally changed (and destroyed in some point) my point of view as well as my personality. I suffered from bowel pain since I was a kid. I have memories from when I was 5 years old, playing with my toys, feeling paralyzed after an unbearable stab was coming from my insides. But I didn’t tell anyone from my family (even my parents) about that because I thought that they would laugh at me or simply not believe me. I then decided that the right thing to do was to just keep that inside, swallowing the bad feelings that the pain created in me and just hang on. Twelve years after those episodes, noticing that something terribly wrong was happening inside my body, I knew I had to tell my parents about the troubles I was having lately. It was awful for me, like they were going to use it against me. It was like the privacy of my body was corrupted and had become so ugly. Right after that, I had to go to many appointments. I was under the influence of drugs that did nothing for me until my official diagnosis. I was in my last year of high school with my prom ahead and I couldn’t handle it anymore. So incredibly sick, I stayed at home for almost half a month. When I came back to classes, everybody asked me what was going on. My tutor had told my mates I was ill. I was sooooooo ashamed to say that I had problems with my colon; instead I explained that I had an endoscopy and it was just something in my stomach. Classes finished, I didn’t have to see anyone for a long time and I felt released. But with my friends, that was so different! First, only my best friend understood how much I was suffering. Second, I didn’t know how to explain to my other buddies what an autoimmune disease was, because I didn’t have too much information. Really, I didn’t get it until I had my third flare, which was the worst of all. But the fact that I was heavily medicated and my bowel was seriously damaged still made me feel ashamed. I continued with my “stomach” lie for a long time! Forcing myself to do stuff for others, like
go walking with a friend when I was awfully anaemic and dying from pain. Because as far as they knew, it was just a stomach cramp! I just got tired of having to have a double face for almost everybody. It made me feel so uncomfortable all the time. It’s torture. It’s like you’re inside a closet. We have to face that talking about our colons is still a taboo in the most of the western countries. For a big percentage of people it’s considered disgusting, nasty and very improper for women! Do you get an idea of all the lives that could be saved if people were free from those unfounded fears and preconceptions? One of my grandmothers had colorectal cancer because she was ashamed of her diarrhea. She had polyps and diarrhea for almost a year and wouldn’t tell anyone about that because she was so ashamed of her symptoms. My other grandmother has IBS and doesn’t get help because she’s also ashamed. My greatgrandmother suffers from macro colon. Her husband, my great-grandfather, had trouble with his bowel, too. An uncle had a major surgery on his bowel. And you know what? They hide these problems all the time. My uncle shouldn’t have had that surgery. If he would have gotten medical assistance beforehand, his health could have been saved. Do you understand the impact of this stigma? I was raised in a society where going to the toilet is a shame! After a long time pretending it was just something minor in my guts (but to everyone else, in my stomach), I got tired and so sad from it. I had to speak out! I promised myself I was going to teach people about my problem, that it’s no good to be embarrassed about it. And it helped me. Now, each time I feel bad, I tell my friends what’s going on. If someone sees me taking my pills, I tell them what they are for, even if they don’t understand. It doesn’t matter. It makes difference. I sometimes feel discriminated against---sometimes from my relatives, sometimes from my own circle of friends, sometimes from college professors that don’t mind if I have just A+ in my notes. People sometimes doesn’t believe me; they say I exaggerate or create strange diets when I tell them I can’t go out because I’m in pain or I’m fatigued. But I firmly made my decision: I won’t keep the suffering to myself anymore. It can help people, people that could be at the same point I was when it all started. I don’t want anyone to feel bad about it. There’s nothing bad or shameful in expressing how or what you feel. You have enough problems in your insides, you don’t want more, do you? I just read a phrase from Friedrich Nietzsche, a German philosopher, that says “What doesn’t destroy me makes me stronger”. I found it perfect. Keep fighting. I truly support you! Valentina.
As I walked through the parking garage towards my doctor’s office, with Mom by my side, we laughed jovially about some of his…. traits? ticks? I’m not sure what you would call them, but oh how they made us laugh. We sat down in his examination room and nearly lost control, as he everso-gently tucked his sparse strands of hair across his forehead and into his comb-over. He had this habit of putting “L’s” in all the wrong places. So when he told me he was diagnosing me with Crohn’s Disease, and that it can “cauLse nauLsea,” I barely heard him. We started to giggle… And despite our attempts to stifle our inappropriate reactions, or maybe because we tried to stifle them, our bodies started to shake with full-blown laughter. Poor Dr. Johnson had no idea why we were laughing, and even excused himself to give us a moment to collect composure. It didn’t help. I laughed, and she laughed. I sat right next to my mom, and we laughed all the way through my diagnosis. Crazy right? Who laughs when they are being diagnosed with a chronic illness that has no cure?? Well, let me tell you 2 things: First, I had no idea what Crohn’s Disease was or what it would do to my body. Second, I consider this inappropriate outburst to be one of my greatest blessings. I look back on the day I was diagnosed and all I remember is laughing. It’s one of our favorite memories together. How often do you hear someone say that about the day they found out such terrible news? Of course, that one moment aside, Crohn’s is no laughing matter. It’s a serious disease that has lifelong struggles and challenges. Challenges that most people keep very quiet, including me. I was 20 years old when I was diagnosed and had been fighting symptoms for over a year before they were able to figure out what was going on with me. I lived in an apartment with friends and had a very active social life, yet only my very close friends and family had any idea about the war being waged inside my body.
It’s just not a topic that is easy to talk about. Nobody wants to tell their friends all about their bloody diarrhea and whatever other “taboo” symptoms they might having. Six years went by before I met a single other person with Crohn’s Disease. Six whole years. But you know what? I bet there were people… but it’s just not talked about that much. We need to change that. I’ve had several stays in the hospital over the course of my illness, but the worst one was in 2007. I checked in to the hospital with a dangerously high fever and was rushed back to the ICU. It didn’t take long before they realized I was experiencing a severe flare and I spent the next 2 years of my life bedridden. 14 months of which, were spent in the hospital. I was diagnosed with cancer, went through chemotherapy, tried numerous medications - none of which controlled my flare, and ended up having 2 bowel resections. I ultimately had my entire large intestine removed and now live with a permanent ileostomy. That’s a very short, summarized version of all that I went through, but I think you get the drift. Crohn’s Disease is serious business. But there’s good news: It doesn’t have to ruin your life. There are good days and bad days, but even with my ileostomy, I live a perfectly normal life. This is the healthy and happiest I’ve been, since the day I was diagnosed 12 years ago. I have a great husband and partner, who is very supportive. He lived in the hospital with me on an air mattress and worked 2 jobs so we could pay our bills. Now, we have an incredible little boy, whom adopted from birth in 2011. He is amazing and makes every single bit of what I went through worthwhile. I may not have realized it at the time, but he is the reason I made it through. I love to sing, write, play volleyball, swim and be outside. All of those things, I did before I was diagnosed, and I continue to do every single one of them with my ileostomy. Life can be normal. You can be happy. It’s a choice you have to make: to deal with the hard times as best you can and then let them go so you can enjoy the great times. After I got out of the hospital, I felt so blessed and lucky to be alive, I had an intense desire to get involved and give something back. I joined the committee planning Relay for Life. I was head of the Luminaria Ceremony and had the opportunity to tell my story at the event, in front of hundreds of people. It’s one of my proudest moments. It was hard, and scary, and I wish I could do it every day. Since then, I’ve participated in many charity walks and events. And right now, I’m waiting to hear back from the Crohn’s & Colitis Foundation of America, about becoming a Cabin Counselor at Camp Oasis!! I’m so excited! I would love the opportunity to help kids and teens struggling with IBD. I’m also a monthly blog contributor to The Crohn’s Journey Foundation and The Great Bowel Movement. They are both amazing organizations that are helping people with IBD worldwide. But the best thing I’ve done is start a blog to tell my story and help support others going through the same things I did. It’s something I’ve dreamed of doing since I left the hospital in 2009, and the day I launched my site: Life, Lemons and Lemonade, was the day I found my true purpose. It’s what led me here and to all the other opportunities I’ve been given to help in this community. I know it’s what I’m supposed to be doing. I’ve met so many people and friends in this IBD community who have helped me, and who need help. People who are struggling to speak out and get help. Don’t wait. Reach out and talk to someone. If I could give one piece of advice to someone who has been newly diagnosed, it would be: Don’t keep quiet. Don’t wait to reach out. I never joined support groups, it never even occurred to me to get help. I certainly didn’t tell people about my struggles. Instead I kept quiet, and found them “embarrassing.” That’s the one thing I would really go back and change if I could. I just didn’t realize back then, the incredible value there is to having people around you who know and understand what you’re going through. It’s critically important and has helped so many people along their way. Now, I know that. I’ve seen the value of it firsthand and I’ll never be quiet again. I will speak to anyone who will listen, in an effort to raise awareness and find a cure. I hope to someday publish a book that tells my story and helps others along their journey. I dream of someday being a part of the reason we finally put an end to Crohn’s Disease and Ulcerative Colitis. Won’t you join us? Join the fight, and speak out about your IBD. People need to hear. And I wish you “love to your insides” and the best of luck along your journey.
I am a 29 year old gal living in Austin, Texas. I began having trouble with my digestion in the spring of 2013, and I was lethargic. A nurse told me I had hemorrhoids so I thought that it was no big deal that I had blood in my stool. I had a very stressful year, in part because I was fixing up my house. Around New Year’s Eve, I woke up one morning very sick. I was constipated, and I had incredibly painful cramps. The only thing that made me feel better was taking hot showers. I thought that I had a stomach virus, and when I did not get better after several days I thought it was good poisoning. I saw a general practitioner because my insurance company wouldn’t let me see a gastroenterologist until after I saw a GP. I was put on antibiotics and I got even sicker. I went to the ER because I couldn’t wait for the test results from my GP. I spent a week in the hospital. After a colonoscopy, I got diagnosed with UC. I was told that my diagnosis might get changed to
Crohn’s in the future, but I hope it stays UC! When I was in the hospital, it was hard for me to have my boyfriend and other people see me because I was depressed. It was weird having my boyfriend walk me to the bathroom and hear me talk about my bowel movements. I felt bad that he and my family members gave up so much of their time to hang out with me in the hospital. I began taking steroids after my colonoscopy. Sometimes they made me feel great. Other times I felt strange or I was unable to sleep. I managed to stay calm during the lowest points of my illness. I did not lash out at anyone. I wrote about my experiences in my journal to try to process all of it. I was thrilled to be able to return to work a few days after I was released from the hospital. Luckily, I have an office job where I don’t have to move around very much. I used up all of my paid time off while I was sick, but I didn’t lose any of my normal paychecks, which was great! I used to exercise regularly. I used to walk my dogs every day and go to yoga. I got diagnosed over two months ago and I haven’t exercised at all since then! It’s nice to rest and relax, but I will be glad when I’m able to exercise and go to the gym. I was exhausted during the first month after my diagnosis. My energy level is better now. I can clean up my house and go out with friends. Things are almost “normal”. I am able to eat normally, for the most part. I don’t mind avoiding spicy foods. I have had a few beers and a few glasses of wine since my diagnosis, but I can tell that alcohol makes me sicker. I am not going to let UC stop me from having a drink occasionally, but I am going to be very careful about how much I drink! My family, friends and boyfriend have all been very supportive. I’m lucky that they stayed with me in the hospital so I wasn’t alone. When I got out, they bought me groceries and made me dinner, and took care of my dogs for me. Of course they don’t always understand my illness and they may forget about it at times, but I think my illness brought us all closer together. Of course I hope that I will not have any more UC flare ups, and I hope I won’t need surgery. I hope I won’t need too many more colonoscopies, but that’s just wishful thinking! I want to be able to change jobs in the future. I want to face stressful situations at work without making myself sick. I want to travel. It can be hard to eat and sleep in a healthy way when traveling. But if I am careful and I prepare, I think I can do all of the traveling that I want to do. My Dad had Crohn’s disease. Unfortunately he’s no longer with us because he also had ALS, so I didn’t get a chance to talk to him about his experience with Crohn’s. I know that he took steroids for a full year, and he never had another flare up after that. He was lucky in that way. Crohn’s didn’t stop my dad from having kids and being a great parent. When I am ready to have kids, I won’t let UC stop me. UC can be hard to talk about because most people haven’t heard of it. One of my main symptoms is diarrhea and that’s an awkward thing to discuss. I lost about ten pounds when I was ill. It’s hard for me to talk about my weight. I don’t even like thinking about my weight. I have to admit that I am worried about gaining too much weight since I’m on steroids. It’s good to talk about these things to make more people aware of IBD. If I had known more about IBD then maybe I would have seen a gastroenterologist sooner instead of ending up in the hospital for a week! I’d be happy to participate in volunteer efforts. One of the first things that I did after my diagnosis was search online for the IBD community. I’m glad that a strong IBD community exists on twitter and elsewhere! Follow me on twitter @carrieplays. I love to write about my experiences.
I was diagnosed with Crohn’s Disease at the age of 15. I was going to the doctors for stomach pains and the fact I was throwing up every day for almost a month. I got sent to a G.I. and was ordered to have a colonoscopy and endoscopy. After being diagnosed with Crohn’s Disease I was put on prednisone and azathioprine. I was on Prednisone for over 6 months, which in the long run actually made the inflammation worse. I now have 6 week infusions of Remicade, and I take azathioprine. At first only my mom, her best friend, and her son knew. I wasn’t ashamed of having it; I just wasn’t really ready to tell anyone. I didn’t really want to tell myself that it was true. Soon I did tell more people, I couldn’t really hide it anymore. I only spoke about it with people I saw on a daily basis. I’m ready to share my story because it feels great to talk about it, and maybe help someone else! I just want more people to know what goes on with IBD, and understand it. Since being diagnosed with IBD, I have had to miss a lot of school. My freshman year in high school I would miss at least one day every week, closer to the time I was diagnosed the days
I would go home I felt like I would throw up. After realizing this year how many days I was missing I now do online school. Despite having missed so many days I managed to have A’s in most of my classes. My mom was really the one to make me keep fighting through all of the crazy moments when I felt like giving up. Without her and all the fantastic people in the IBD world, and my best friends, Quinn and Brianna, I would’ve given up a long time ago. One of my most proud accomplishments would be having a job and balancing school through all the sick days and doctor visits. Thanks to my wonderful G.I. doctor for working to make the sick days a minimum I haven’t missed but two days of work. Since I’m doing online school the only problem I have is actually doing the work, but it does get done eventually! That is also probably the one of hardest parts of living with IBD, knowing whether or not you’re going to be able to make it throughout the whole day. Some days I’m going strong, others I’m debating if I should even get out of bed. I really struggle keeping up with my friends since being diagnosed with IBD. I want to go out and have fun like all the teens my age, but sometimes staying in and watching Netflix sounds like the perfect night. I want to someday go to college and become a psychologist. I want to help teens with mental illnesses and well as kids with IBD. I love to talk to people and try and help them find ways to fix their problems, give them advice! I love to know that someone has a new way to think about their problem, or they leave happier than they were when we first started talking. My advice to newly diagnose would be to just relax, and accept it. You just have to keep in mind that every day is a new day to make something better, to realize what you should and shouldn’t do. Every day you will start to embrace it even more then the day before, it’s nothing you should be ashamed of. Surround yourself with positive people! Everything is going to be alright, there are millions of people like you out in this big great world. You don’t need to feel like an outcast, odds are you’re probably the greatest person anyone has ever met. So just remember the sooner you embrace it, the sooner everything becomes easier.
In January of 2011 I began having serious digestive issues. Those of you with UC and Crohn’s know what I’m talking about: multiple bouts of bloody diarrhea every day several times a day. I had no idea what was going on with me but tried to ignore it like so many of us do. When I could no longer take the pain, I went to my general physician. She chalked it up to IBS--even though I told her that I was seeing some blood. She prescribed some antibiotics and ordered a stool sample. A week later, I wasn’t feeling any better so I came back with said stool sample. They did an x-ray of my abdomen to see if I was having trouble passing stools (um, I wasn’t!). I didn’t appreciate the way I was being treated by the nurses. While I was in the area where they take blood samples, one of the other nurses was examining my “stool sample.” The look on her horrified face made my heart sink and probably made my face turn bright red. She looked at the nurse who was prepping me for the blood sample and said, “UGH! LOOK AT THIS!” The nurse turned back to me after they were finished being completely disgusted by what they had just beheld and asked for my name. When I told her, both of them got very quiet realizing the awkwardness they had just created. Yes, ladies. That bloody jar of “poop” was MY stool sample. Thanks. The doctor ordered an emergency colonoscopy. The prep was an utter nightmare. To all of you Harry Potter fans out there: I now know what was in that basin that Dumbledore had
to drink on the little “island” in the middle of the lake with all the inferi in it! It was that liquid garbage they give you to drink the night before a colonoscopy. Dumbledore was NOT exaggerating. Fast forward to a few days later... My general physician wanted a follow-up appointment to check my blood again. After waiting for what seemed like hours, my doctor came in to announce that I needed a blood transfusion as my blood count had dropped 6 points in less than a week’s time. I don’t remember much more after that. I spaced out and when I got to my car I called Dave, my boyfriend at the time, and started screaming, sobbing and cursing. Why was all this happening to me? Was God angry with me for something? I was confused, scared and tired of being poked and prodded. I was also approximately SIX MONTHS away from getting my black belt in karate before my diagnosis. Still upset about that one...someday I will be a black belt. Mark. My. Words. A week after my colonoscopy, I got the results: I have Ulcerative Colitis. I was put on Balsalazide. I have been in and out of flareups since this initial diagnosis. I’ve seen good times, and I’ve seen bad times (I even got to marry the love of my life, DAVE!). I’ve seen about 5 different GI doctors since then and two surgeons. I’ve visited the ER several times and was once admitted to the hospital for about five days. I’ve been on Prednisone, Balsalazide, Mesalamine enemas, Imuran, Biologics, etc., etc. I’ve also tried “natural remedies” and tried to control it all with diet. I have never been as sick as some of you IBD’ers out there (many of you fight battles I couldn’t even imagine). All this to say, I am now two weeks away from my first surgery. I am getting a j-pouch and hoping for better days ahead. Until then, I hope, I pray, and I fight.
My name is Jeffrey and I am a crohnie. Some people hate that name, but I love it. I have found strength in it and it has helped me find direction and focus in my life. To be a crohnie means that I have Crohn’s disease. I was diagnosed back in the 1980’s when I was 15 years old. It all started when I was a teenager. I slowly started to get sick. I noticed some blood in the water when I went to the bathroom, but was too scared to tell my parents. Over time, things got worse to the point where I was in pain, throwing up a lot and couldn’t get out of bed. Eventually my parents took me to my doctor who was stumped and didn’t know what was wrong. Luckily he had a pediatric gastro in his office. After a quick exam, he told my father that he thought I had ulcerative colitis and wanted to admit me to the hospital for some tests. I remember walking out of his office thinking, “How can I have an ulcer…I am only 15.” Of course, I had no clue what ulcerative colitis was and the doctor never gave a description of it. After 5 days in the hospital and numerous tests, he gave me the diagnosis of ulcerative colitis and put me on Azulfadine. I got better but a year later I got pneumonia and my IBD acted up really bad. It was so bad that I stopped going to school. My doctor would not give me home study so I moved on in doctors. Eventually I found one that let me stay home from school and that helped me emotionally to heal. Eventually I would change GI’s again and he would change my life. After a colonoscopy, he found disease in the ileum and would change my diagnosis to Crohn’s disease. Now, back in the 1980’s and 1990’s there was no internet, so all my research came from outdated books in the library. I did a lot of research and thought I knew my disease. I was wrong. I would go for many years dealing with my Crohn’s. I would have good days and I would have bad days. Everything would change though in 2011. My father in law would pass away from complications due to his ostomy he got from ulcerative colitis. I started to see just how powerful IBD can be and how deadly. Soon after his passing, I would go into the worst flare of my life. I was going to the bathroom 30 times a day with cramps and nausea. I fell into a deep depression. I was convinced that I was finally going to need surgery and most likely was going to need an ostomy. It then hit me that I didn’t even know what an ostomy looked like.
This was my turn around moment. This is when I stepped in the sun and became the person I am now. I started to research IBD and ostomies online, mainly on Youtube. It was then I found inspiration from so many people. I reached out to some of them and struck up some friendships. I started to see that my life wasn’t over, but just starting. First, after my colonoscopy in 2012 I found out that my Crohn’s actually got better. My doctor would change my meds and I started to get better. But that was all physical. I still had to heal mentally. That is when I turned to my new family. I saw so many people talking about their disease online and how it made them stronger. So I decided to do the same and start educating others while at the same time teaching myself. First I started with a video on Youtube. I learned real fast that I hated being in front of a camera and that it wasn’t for me. Next I tried to create a blog. I tried out 3 different websites and none seemed right for what I wanted to get out. Eventually I found Wordpress and this would be my soapbox. My goal for my blog is to let people know that they aren’t alone with their disease. I also want to help educate others. I have found that so many doctors, while diagnosing patients with IBD, really don’t know what IBD is. So I am taking it upon myself to learn as much as I can and release that information to everyone else through my blog. Over the past 2 years I have thrown myself into IBD. I have volunteered for the Take Steps walk from IBD. One year I walked and the other I actually worked it. In 2013 I volunteered for Get Your Guts In Gear and met so many wonderful IBDers, some of them I had talked to online. This past year I have gotten involved with The Intense Intestines Foundation (IIF). Working with Brian, the founder of IIF, I am now starting to fulfill my dreams of educating others. I am currently in the process of setting up a support group for Northern New Jersey for people with IBD and ostomies. Brian has given me some direction but has let me run with the project and make it my own. For this I am grateful. Looking back over the past 26 years, I have seen a lot with IBD but only really knew what I had these past 2 ½ years. Looking back I think about how I could have changed things for the better. Over the years I never thought diet played a role in IBD. After my last flare, I decided to try going gluten free. Now, I wish I would have done this sooner. My views on diet have changed and I am convinced that food places a big role in IBD control. Another important aspect is medicine. Over the years I have been on every type of medicine. I started with sulfer drugs and eventually moved to steroids, antibiotics, immunosuppressant’s, and biologics. Nothing really worked and with most I got the negative side effects. So, finally I decided to try something unconventional and with my GI’s approval went on Low Dose Naltrexone. The combination of this and the gluten free diet and helped me almost get into remission. So, that is my story. I know I have a lot more to go with my journey. I will continue to blog and teach. To see more of my blog, come to www.aguywithcrohns.com. I also have been doing a blog at http://www.crohnsforum.com/blog/. Living with IBD is no longer a death sentence in my head. Now, I view it as a way of life. We have our own community where everyone cares about one another. We are close knit. We all seem to know one another in some way, whether it is from talking on Facebook or Twitter to reading blogs on Tumblr. Or maybe you just like to look at pictures on Instagram. Somehow, we all find each other. Hopefully one day soon, we will be able to make enough noise to make IBD a household name.
In November of 2012, I was on my way to a choir competition in South Carolina when my bus was hit by a semi from Pepsi. Thankfully, none of us were hurt at the accident and God really protected us that day. But, little did I know when I had hit the seat in front of me and then behind me, I had damaged my T10 on my spinal cord, which can cause stomach issues like UC and Crohn’s. A couple weeks after the accident, I was at a basketball game and I started getting pains in what I thought were my ovaries. My mom had asked me if I was alright and I assured her I was fine, just hurting a little. We had scheduled an appointment for January with a gynecologist because we thought the pain was in that area. I had an ultrasound and a check on my cervix but everything was absolutely perfect in that department. I still had the stabbing pain afterwards, but in March it had subsided. My pain freeness was short lived, and when the pain came back, it came with vigor. I woke up one morning to go to school and it was as if
someone was lighting my stomach on fire. I doubled over in the bathroom and begged my grandma to take me to the emergency room. She did, and by the time I got to the ER my pain was gone, but they still checked me out. They told me I was constipated, but it didn’t make sense because I was going without a problem. Finally, in July of 2013, I could take no more of the burning pain and we scheduled an appointment with my current GI doctor, Dr.XIao. He said I was probably fine and ordered a colonoscopy. On August 5th, I had my first colonoscopy. I was scared but when I woke up I was in denial. I was diagnosed with Ulcerative Colitis. I was scared for the future. I didn’t want to be labeled as the sick kid and I didn’t want to have to miss school for stomach pain and surgeries. I didn’t want people to feel sorry for me. I was angry at God. I had asked him, “Why God? I am fifteen years old! I have my ENTIRE life ahead of me! Why me and why this?” My first medicine was Asacol. It didn’t work for me so then they tried me on Delzicol, and that also failed. The third medicine they put me on was Budesonide. It had worked for a while but towards my fourth month on it, things started going awful. I would sit up at night with nausea, and pain in my colon. I had another colonoscopy in November 2013, and I found out that my UC was severe, and our last resort before surgery is Remicade. I began Remicade on January 19, 2014 and so far it has worked well. I feel better than ever before. I just want to let you know that you are not alone. IBD is not a fight that you will fight by yourself. I have an amazing group of people who support me and pray for me. When you are going through your low point, remember you have so many people who love and care for you, hopefully. If that is not the case, remember that all of us other IBDers are thinking of you and know what you are going through. IBD is our own crazy journey in life, but it gives us a new perspective. Your life may be changed, but that just means you live it to the best every day. Since turning in her article, Alexis was diagnosed with Crohn’s Disease instead of ulcerative colitis. She continues to fight and be a strong advocated for the IBD community.
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TREATMENT OVERVIEW By Brandon W. @IBDWATCH WWW.IBDWATCH.COM
A 4th year medical patient and Crohn’s patient describes options and medications being used to treat inflammatory bowel disease.
Treatment options for Inflammatory Bowel Disease can be confusing. There are numerous possibilities and they are generally categorized as 5-ASA drugs, corticosteroids, immunomodulators or biologic therapies. In this article, I attempt to provide an overview of the mainstream treatment options and explain the situations in which they have shown benefit. Before I do, I need to explain some background concepts about IBD treatment. Optimal treatment for IBD depends on disease severity, behavior, location and exact diagnosis (Ulcerative Colitis vs Crohn’s). Disease severity is generally classified as remission, mild-moderate, moderate-severe or severe-fulminant. Disease behavior in severe Crohn’s disease can be fistulizing (abnormal passageway) and/or stenosing (narrowing). Disease location in Ulcerative Colitis can be limited to a section of the colon or involve the entire colon (pancolitis). Disease location in Crohn’s can involve any portion of the digestive tract including the small intestine and/or perianal area. Treatment options are broken down into being maintenance therapy, induction therapy or both. Therapy to maintain remission is termed “maintenance therapy” and therapy to induce remission while in a “flare” is called “induction therapy”. Medications effective as maintenance therapy may not necessarily be effective as induction therapy and vice versa. Once remission is achieved by induction therapy, maintenance therapy is initiated to extend the remission and prevent future flares. Current treatment options are most commonly chosen from safer drugs with less adverse effects first before choosing more potent drugs as they are more likely to have adverse effects. This is called the “step-up” approach. Some researchers, however, have suggested that a “step-down” approach where more potent yet more toxic drugs are chosen first particularly in severe cases (perianal location, fistulizing and/or stenosing behavior) to reduce the increased complications of severe disease. 5-ASA (5-aminosalicylic acid) drugs These are mesalamine (5-ASA) based medications which include Asacol, Lialda, Pentasa, Rowasa, Canasa, Apriso and others. The precise mechanism of action is unclear, but they are believed to have anti-inflammatory properties and differ in the technology that makes them delayed-release (pH vs time). Combination of oral and rectal therapy can be used in Ulcerative Colitis as Rowasa are enemas and Canasa are suppositories.
5-ASA drugs are effective for the induction of mild-moderate disease and maintenance of remission in Ulcerative Colitis, however, they have not been shown to be effective in either the induction or maintenance of Crohn’s disease. Non-efficacy in Crohn’s is likely due to the fact that 5-ASA medications act primarily in the colon and not in the small intestine where Crohn’s disease can occur. Pentasa and Apriso are 5-ASA medications that may have efficacy in Crohn’s as they act in the small intestine and colon, however, no studies have reached significance. In patients with Crohn’s disease limited to the colon 5-ASA’s may have benefit, however, I am not aware of any studies that have evaluated this hypothesis. Systemic availability of these medications are low so adverse events (headache, nausea, rash) are generally no greater than placebo. Very rare adverse effects include interstitial nephritis, pancreatitis, pericarditis and hepatitis. Corticosteroids “Steroids” This group includes prednisone, methylprednisolone, budesonide (Entocort) and budesonide MMX (Uceris). Corticosteroids act by inhibiting many aspects of the immune response including the trafficking of inflammatory cells. Steroids have side effects including increased risk of infection, psychiatric disorders, acne, fluid retention and diabetes. Long-term use increases the risk of bone loss and therefore are not recommended as maintenance therapy. Prednisone and methylprednisolone are first line options for the induction of both Ulcerative Colitis and Crohn’s disease. Methylprednisolone is slightly more potent than prednisone and is generally given IV while in the hospital while prednisone is generally given orally as an outpatient. Initial doses of prednisone range from 40-60mg and is tapered over 2-3 months. Rectal steroids can be of benefit in left-sided or rectal Ulcerative Colitis. Budesonide (Entocort) is a corticosteroid with action mostly limited to the small intestine and colon reducing the risk of side effects seen with other steroids. Entocort is shown to be effective in inducing remission in mild-moderate Crohn’s disease, however, it is not shown to be effective in the maintenance of remission in Crohn’s disease. Budesonide MMX (Uceris) is similar to the original Budesonide except it includes delayed release technology to focus its beneficial effects to the colon. Uceris has been shown in limited studies to be effective in the induction of remission in active mild-moderate Ulcerative Colitis. Immunomodulators This group of medications include thiopurine analogs (azathioprine and 6-MP) and methotrexate. These medications work through different mechanisms by inhibiting DNA synthesis and thus the proliferation of inflammatory cells. Azathioprine (Imuran) and 6-MP are effective in maintaining remission in Ulcerative Colitis and Crohn’s disease but are not effective in inducing remission in either disease. Potential side effects of thiopurines analogs include nausea, allergic reactions, pancreatitis, hepatitis, increased risk of infection, malignancy (lymphoma, skin cancer) and bone marrow suppression. Lymphoma risk has been estimated to be 4-times that of non-thiopurine users. Intramuscular methotrexate has been shown effective for the maintenance and induction of remission in Crohn’s disease. Fewer studies have looked at methotrexate in IBD compared to thiopurines so it is less commonly used. Methotrexate can cause liver toxicity, lung toxicity, increased risk of infection, malignancy, hair loss and bone marrow suppression. Biologic therapies This class of medications mainly consists of anti-tumor necrosis factor (anti-TNF) antibodies such as Remicade, Humira, Cimzia and Simponi. TNF is a very potent pro-inflammatory molecule which is inhibited by these medications. Adverse effects of these medications include increased risk of opportunistic infections and lymphoma (especially when combined with a thiopurine). Anti-TNF therapies have been shown to be effective in the maintenance and induction of remission in Crohn’s and Ulcerative Colitis with moderate-severe disease. They have also been shown to be effective in the treatment and prevention of fistulas in Crohn’s disease. Vedolizumab and Natalizumab (Tysabri) are anti-integrin antibody medications generally reserved for patients who fail to respond to anti-TNF medications. Natalizumab has been shown to be effective in maintenance and induction of Crohn’s disease, however, it carries an increased risk of a fatal brain infection called PML. Vedolizumab, a soon to be FDA approved and similar type of medication, acts more locally and does not seem to carry the increased risk of PML. It has shown to be effective for induction and maintenance of remission in both diseases, but more promising results were seen in Ulcerative Colitis. The use of a thiopurine and biologic (particularly Remicade) has been shown to be more effective than using either one alone and is called combination therapy. However, long-term use of a thiopurines carries an increased risk of lymphoma and skin cancer and therefore some physicians will discontinue the thiopurine after 6 months of combination therapy and use only Remicade thereafter. Summary Induction therapy for Ulcerative Colitis typically involves 5-ASA drugs (mild disease), Uceris (mild disease), Prednisone (mildmoderate disease) or a Biologic (moderate-severe disease). Maintenance therapy for Ulcerative Colitis typically involves 5-ASA drugs (mild-moderate disease), thiopurines (moderate disease), Biologics (moderate-severe disease) or combination therapy of a thiopurine with a Biologic (moderate-severe disease).
Induction therapy for Crohn’s Disease typically involves Entocort (mild disease), Prednisone (mild-moderate disease) or a Biologic (moderate-severe disease). Maintenance therapy for Crohn’s Disease typically involves thiopurines (mild-moderate disease), Biologics (moderate-severe disease) or combination therapy of a thiopurine with a Biologic (moderate-severe disease). In both diseases a one-time attempt of drug-free maintenance may be attempted before thiopurine therapy is initiated. Due to the increased risk of serious side effects associated with thiopurines use, for moderate-severe disease some physicians may recommend combination therapy (thiopurines with a biologic) for only 6 months before discontinuing the thiopurine leaving only the biologic as therapy. Remicade or Humira are typically the first choice of anti-TNF therapy if indicated followed by Cimzia or Simponi. For disease resistant to anti-TNF medications, anti-integrin medications such as Natalizumab or Vedolizumab are considered. Surgery can also be a consideration depending on disease severity and location. Disclaimer: The views and opinions expressed are those of the contributing author and do not substitute for medical advice of a physician. You should not rely solely on any information presented and should consult a physician licensed in your state in all matters relating to your health. About me: I am a 4th year medical student at the University of Louisville. I have Crohn’s Disease which has given me an unrelenting passion for wanting to help others who suffer from IBD like myself and has thus has driven me to pursue Gastroenterology in the future. I plan on getting much more out of having Crohn’s than it will ever take from me. I operate a website for patients and physicians called IBDwatch.com which aims to keep people up-to-date on the latest research in the IBD field. You can also check out my Facebook page (https://www.facebook.com/ibdwatch) and Twitter page (@IBDwatch)!
#GETYOURBELLYOUT With an idea and a hope to help others, one IBD social media vixen changed the way we look at bellies forever. With an idea and a hope to help others, one IBD social media vixen changed the way we look at bellies forever. We all have witnessed the epidemic sweeping twitter and allowing people to lift their shirts proudly sporting their scars, ostomies or other IBD reminders. This epidemic is one that has been hash tagged as #GetYourBellyOut and we here at Companion Magazine of course had to jump at the opportunity to join the bandwagon. Seeing everyone be so brave as to show what has changed their lives so drastically was inspiring and fun. If we can’t be proud of our scars and show them to the very people we are hoping to help, then what did we do all that tough fighting for in the first place? We found the person responsible for creating such a well-attended social media party. Her name is Sahara and she shared with us a little about her background. She has struggled with IBD for many years, having surgeries, hospital stays and long nights of suffering with what she thought was UC, but is now being looked into as Crohn’s. She had a jpouch built, but still has trouble with the side effects of inflammatory bowel disease and hopes to someday be free from all of her struggles. In the meantime, she has a blog, has a marketing job that she loves and puppies that make her world go round. “I have one more option medication wise which is the Infliximab infusions, if the entecort doesn’t work it’s on to that. If those options don’t work I will have to have my pouch removed,” says Sahara. “I have requested and been granted permission to see a surgeon at Northern General (Sheffield) when the time comes to discuss options, which they want me to do if I have to start Imfliximab. Obviously I would much rather have revision surgery than it removed, I never coped the stoma very well mentally.” So, with all of the negativity seemingly surrounding her life, Sahara decided she wanted to start her own version of awareness. Sahara was inspired to start her own awareness campaign when she saw how popular the #NoMakeUpSelfie was for cancer research. “My first moan is that they call it ‘raising awareness’. It is not raising awareness when it’s something that everyone on the whole damn planet already knows about. Raising money for a well needed cure, yes. Raising awareness, No,” Sahara writes in her blog. “So I started my campaign with a Facebook post, the beginning of which read, ‘Seen as sharing disturbing photos in aid of raising awareness is the current trend, I want to raise awareness of something that matters to me… #IBD.” Sahara wanted to not only help raise awareness for a cause she cared deeply and personally for, she wanted to raise funds. She began by sharing pictures of herself, weight loss photos, pictures of her scars and ostomy site to different social media groups on Facebook and twitter. She was shocked when her post had been shared over 100 times by the next day. From there she decided her post had gained enough attention to begin raising money as well. “A day or so later I saw a post in a group on Facebook by Gem Willingham. Gem had set up a Just Giving page to try and raise some money for Crohn’s and Colitis UK within her circle of family and friends. What a fab idea! I’m getting in on this action,” Sahara wrote. Sahara then set up a Just Giving Page, with a text code of IBDA99, where text donations could be sent to 70070. “Again, I shared my belly picture in Facebook Groups and then set my sights on Twitter, all the while urging people to donate,” says Sahara. She then was offered help via twitter by someone who was also affected by IBD, @colitisandme came up with the idea of using a hashtag of, “GetYourBellyOut,” so the posts could be tracked.
“We were beside ourselves the next day to see that we had raised a whole £88! Little did we know how far we could come. The updates from people sharing their belly pictures, being brave and bearing all to raise awareness of this invisible illness made me so proud to be a part of,” says Sahara. The social media fundraising continues, as different foundations and advocates took notice to how much positive affect this was having on the IBD community. People from all over the world affected by IBD have bravely posted pictures of their bellies, with or without scars. We all know the pain and at times, embarrassment that IBD can cause. The #GetYourBellyOut campaign is a fun outlet for those affected by IBD to not only proudly share their scars, visible or not, but also to help raise funds for these incurable auto-immune diseases. “What started out as a campaign to raise awareness of an invisible illness that so many people suffer with in silence has turned in to a campaign of inspiration and unity!” If you would like to donate to the #GetYourBellyOut campaign, upload your belly pics with the hashtag #GetYourBellyOut and text IBDA99 and your donation amount to 70070. You can read more about Sahara and her ventures on her blog at sahara88uk.blog.com. Or follow her on twitter @sahara88uk.
A FEW OF THE #GETYOURBELLYOUT CONTRIBUTIONS:
WANT TO HELP? TEXT IBDA99 TO 70070
IBD LIFESTYLE By Kristin Williams @SEMISWEETSTORY UCMEWITHHOPE.TUMBLR.COM
Stress can take over anyone’s life, but it can ruin the life of someone with IBD. Kristin shares how she manages her stress, and how important it is to find relief.
I think I can skip past the lecture on how good exercise is for every single human being. We all know this. We all hear this our entire lives. It helps us lose weight, it keeps our heart strong, blah blah blah, etc. But exercise brings something much more important to the table for those of us with IBD: stress relief. My body reacts to stress terribly. Although it has never been scientifically proven, it is thought that stress might be a huge environmental trigger for IBD. I know that I was under a large amount of stress when my 2nd UC flare hit me when I had been in remission for 4 years-- resulting in my now colon-less body. I feel like I learned too late how much exercise can help our bodies that are under constant attack by our immune systems. I’m not asking you to go out and run a marathon. If you’re anything like me, fatigue is a huge part of having IBD. We may be mentally stronger than most people, but going out and doing little things can leave us exhausted. There are other forms of exercise to help relieve that stress. I played tennis my entire life, but during my flare, the last thing I wanted to do was get out on a hot court away from bathrooms and run and hit until I wanted to curl up in fetal position. My answer? Pilates. Yoga is another incredibly good one. They’re both done indoors (sometimes outdoors, which can be relaxing), so bathrooms are nearby. I was able to attend my classes and be somewhat worry free. I walked into each class with so many worries on my mind. Would I ever go into remission? Would my medicines do more harm than good? Would I be able to eat out with friends tonight? Everything disappeared during my class. Stretching, breathing techniques and muscle toning would completely rid my mind of these worries each class, and I would leave feeling like a new person, not to mention physically stronger. I would always walk in worrying about bathrooms, but never think once about one during the hour long routine. Funny how that works, right? Our bodies need some sort of outlet to relieve stress. It’s so crucial. My advice? Find some sort of activity like yoga, pilates, or even just walking. Can’t go to a gym? Get outdoors. Take a short walk. Look up pilates or yoga videos on YouTube. You don’t have to spend any sort of money to get the stress relief you need. I’ve even downloaded a meditation app that walks me through deep breathing--I use this at night before bedtime and it clears my mind and helps me sleep. Our bodies are at war, and they need all the help they can get. You’re doing all you can do when it comes to medication, but give your body the extra boost it needs with some sort of stress relieving exercise. Whether it makes a small or big difference, your body will be thanking you.
A FEW MOVES TO HELP STRESS
Inhale through your nose and exhale deeply through your mouth, sinking deeper into each stretch.
I hold a lot of tension in my back. One of my favorite stretches is to cross my left bent leg over my right one, press my right elbow into my outer left knee, and twist my body to the left. Switch sides.
Starting on all fours, extend out so that your body is outstretched and slowly lower your knees to the ground, pushing upward through your palms. Look up to the ceiling. Breathe in through your nose and exhale through your mouth.
My favorite of all my favorites: childâ€™s pose. You can find me in this on a regular basis. Fold over bent knees and touch your forehead to the ground. Walk your hands out as far as possible to achieve the best stretch. Breathe in deeply through your nose and slowly exhale through your mouth.
STOMACH FRIENDLY RECIPES Everyone is different when it comes to food. Kristin shares a few recipes that kept her alive when food was the last thing her body wanted.
BAKED GINGER GARLIC CHICKEN Ginger is known to fight inflammation--so take this, intestines. 8 boneless, skinless chicken thighs 2 tsp olive oil 1 TBSP apple cider vinegar 1/4 cup soy sauce (tamari if gluten free) 1 tsp ground ginger 1 clove garlic Spray a 9x12 baking dish. Lay chicken pieces side by side. Whisk olive oil, vinegar, soy sauce, ginger and garlic in a bowl. Pour over chicken. Bake uncovered at 375 degrees for about 25 minutes.
COCONUT RICE During a flare, the only thing I wanted was bland food. This recipe gave me exactly that but with a sweet, savory taste. 1 lime 1 TBSP brown sugar 1/2 tsp salt 2 TBSP butter or olive oil 2 cup jasmine rice (rinsed) 1 1/2 cup water 1 1/2 cup coconut milk Rinse jasmine rice. Melt butter/olive oil in a sauce pain on medium, add salt & brown sugar. Stir until dissolved. Add rice & stir to coat. Turn heat to high. Pour in coconut milk & water; squeeze in lime. Give a quick stir & cover. Bring to a boil, then reduce heat to medium low. Simmer for 20 min covered. Remove from heat, let steam covered for 10 min.
COCONUT GINGER CHICKEN SOUP My colon hated dairy--coconut milk gives soup the creaminess without the aggravation. juice of half a lime zest of 1/2 a lemon 1 3/4 cup coconut milk (15 oz can) 1/2 cup long grain rice 1 (1 in) piece ginger, cut in thirds 4 cup chicken broth 3 TBSP fish sauce 1 lb boneless chicken breast (about 3) cut into thin, short strips handful of cilantro Combine chicken strips with fish sauce in a pan, set aside. In a pot, bring broth, lemon zest, lime juice & ginger chunks to a simmer. Add rice, simmer until rice is almost done, about 15 minutes. Add coconut milk & bring back to a simmer. Stir in chicken & cook until chicken is done (3-4 minutes). Stir in cilantro.
NO-COLON KOOL AID After having my colon removed, I had to drink plenty of electrolytes every day, but I couldn’t STAND the taste of fake sugar in sports drinks, and they’re disgustingly sweet. My mom & I created this recipe stemming from a mammal hydration book (I know, right?). It’s what keeps me alive! MAKES 1 QUART (I fill mason jars up & store it in the fridge): 3 TBSP sugar (adjust based on your sweetness preference) 1 tsp salt 1/2 tsp unsweetened kool-aid (also adjustable--I keep tons of flavors on hand!) Mix with boiling (for better dissolving) or cold water. Store in the refrigerator.
DO YOU HAVE A FAVORITE FLARE FREE RECIPE THAT YOU’D LIKE TO SHARE WITH US?
EMAIL YOUR RECIPES & PICTURES TO COMPANIONIBD@GMAIL.COM
SPRING BREAK: COLLEGE STYLE By Michelle G. @OHMICHELLEG
IBD keeps you from a lot of things, but an ostomy doesn’t have to. Don’t let IBD and your ostomy keep you from the sun.
I believe college is an important part of everyone’s life. I knew after I graduated high school back in 2009 that I wanted to go to college, so I could support myself and have a successful future someday. At the time, I had an optimistic attitude and was more excited than ever to begin my life as a college student. Throughout high school my Crohn’s retained remission for a solid four years. Little did I know, the beginning of my college career was also the return of my flare-ups. As time went on, my flare-ups became worse. The fatigue and stomach pain was unbearable. Not to mention my colon gave me a constant urge to use the bathroom. My GI doctor put me on a high dose of prednisone, so that my inflammation would be under control until further tests could be done. Eventually it got to the point where I had to withdraw from school. My quality of life seemed to have disappeared and I felt hopeless. I had absolutely no energy to hangout with my friends or to get any school work done. This was also the time when I learned who my true friends were. Due to the fact that my quality of life seemed to be completely lost, I had no choice but to have a total colectomy. All I wanted was to feel better. After the recovery from my total colectomy, my overall health significantly improved. Having a permanent ileostomy without a doubt saved my life. I can’t stress enough how absolutely worth it the surgery was for me. I am now back in school and also working part time. I am happier and healthier than I have been in a very long time, all thanks to my stoma! My advice for anyone who has an ostomy, would be to always keep a set of extra supplies and a change of clothes with you at all times. I like to keep mine in my car. That way, you will always be prepared if you get a leakage. For anyone who is feeling down because of this awful disease, don’t ever give up! Hope really does matter, and everyone with IBD is still entirely capable of being successful.
THE INTENSE INTESTINES By Brian Greenberg WWW.INTENSEINTESTINES.ORG @NtenseNtestines
INTRODUCTION: Never Stay Quiet. It’s a brave task when you’re airing your dirty laundry—literally. My name is Brian Greenberg, and I will Never Stay Quiet. I was diagnosed with Crohn’s disease at age 11…18 years, 32 minor surgeries, 2 resections, an ileostomy and countless blog entries later… friends and family began urging me to share my story to help others. It’s always been an uphill battle, but I’ve refused to let Crohn’s take over my life and passions. I’ve always loved the outdoors, friends and challenging myself—even with a chronic disease— and wanted to inspire others to do the same. Out of this desire, the Intense Intestines Foundation was born. My vision was to give hope to others when they might not have it. At the Intense Intestines Foundation, we’re devoted to doing just that for those with Crohn’s disease, ulcerative colitis and ostomies. Our goal is to raise awareness and empower inflammatory bowel disease (IBD) patients to live active and fulfilling lives. Another way to help is by connecting others with these conditions to assist them in overcoming IBD. As we all have probably experienced, the symptoms and battles we deal with on often a daily basis are not always easy to share—and with no one sharing, it often creates the illusion that we’re alone, fighting this daily battle by ourselves. But that’s not the case. More than 1.4 million people are living with IBD, and that’s just in the United States. The IIF is dedicated to building a community and networks for IBD and ostomy patients. These opportunities to interact connect them to others who truly do understand what it’s like and give them the confidence they can be capable, even if you’re sick. It’s been an amazing journey thus far, and I cannot wait to see where the rest of it leads. From a couple blogs written from my bed to our 501(c)(3) certification to our most recent event (a magic show) wherein we hosted attendees from halfway across the country, the IIF has steadily been gaining steam, growing our brand and developing a larger, more engaged community. We’re excited to be designing additional ways to directly touch and support the IBD community. The IIF is really starting to gain traction and start making a larger, positive impact. As our organization grows, so does our dedication to impart hope to those with Crohn’s, ulcerative colitis and ostomies—to bring our community together, empower those suffering to live their lives to the fullest and inspire them to Never Stay Quiet and never let IBD Stop Them from achieving their dreams. THE FOUNDATION: The IIF connects, supports and educates the public and those afflicted with IBD through a variety of programs and activities with the intent of channeling funds raised directly to patients. Our original program is the “Intense Intestines Scholarship,” which supports young IBD patients and their families with the growing cost of earning a higher education—even with a disease that often prevents sufferers from following the typical four year college path. Our newest program will be our “Intense Intestines Medical Bill Assist”. This program will benefit IBD and ostomy patients when their insurance doesn’t cover the fair amount of a claim for hospital stays, medication and other IBD related medical treatments. Directly aiding patients to mitigate the financial burden of having Crohn’s disease, ulcerative colitis and ostomies allows us to be unique in the way we touch the lives of our community. Not feeling alone in our battles is imperative for anyone with IBD or an ostomy, and the IIF looks to bring people of similar mindsets together through our activity-based events. We believe that with the right planning and preparation an IBD patient can live close to a normal life (as long as they are not in a flare). We encourage people to meet other IBD patients through our events such as the “Climb for Crohn’s & Colitis”, “Cycling the Big Apple for IBD”, “Magic & Mischief” show, “Comedy for Crohn’s & Colitis” and more. It’s practically impossible not to develop bonds with others who understand your situation, create new friendships and grow your IBD network at one of these events—and most importantly, become more comfortable with who you are. As an organization we are proud of how far we’ve come in a short period of time and the accomplishments we will continue to make—and a huge part of this is the feedback we receive from the IBD community on how the IIF is making a positive impact on people’s lives. We regularly hear stories about how the IIF has changed IBD sufferer’s lives and their families’. Our two scholarship winners have discussed with us that it not only helped them feel motivated at school, but also gave them added energy to battle back during their semester and that it helped their entire family become closer with all they have been through. Sarah Brocker, our second “Intense Intestines Scholarship” winner told us, “The scholarship has not only helped me pay for school but also given me some much-needed encouragement. It was as if [the IIF] was saying, ‘We think you’ve done a great job, despite your Crohn’s, so keep it up!’ It has given me something to fight for, to not only prove to myself I can do school, but to also show the world what someone with Crohn’s can accomplish.” As technology drives our world to become smaller, we’ve used this to our advantage to touch those in graphically diverse locations through our website. We’ve received notes about how seeing our “Never Stay Quiet” videos and other website content has given IBD patients the motivation to keep fighting. For instance, I was told that an individual googled “IBD” to learn more about his own affliction, found the IIF website, discovered he recognized someone our “Never Stay Quiet” video series—someone he had known for years—and this elevated their bond to an entirely new level. It’s stories like these that make us proud and keep us working hard at the IIF. When you know you’ve touched someone with IBD in a positive way, you know you’re doing something right.
It’s an incredible accomplishment to know you’re changing someone’s life for the better—whether through events, networks or content—and that’s exactly what motivates us to continue to grow, to educate, to support and to connect.
FUN FACTS: 14 riders x 40 miles = 560 miles ridden across NYC for IBD awareness on the Five Boro Bike Tour 7 Intense Intestines Foundation Board Members - 4 of the 7 Board Members have IBD - 3 IIF Volunteers 35 Surgeries IIF President and Founder Brian Greenberg has had since age 19 5 of the 46 Adirondack’s High Peaks Brian has climbed for the IIF 5 Never Stay Quiet videos (http://www.intenseintestines.org/patients/never-stay-quiet/) 2 Scholarships to be awarded this semester as part of the Intense Intestines Scholarship 3 times Brian Greenberg has been on television for IBD and ostomy awareness (CT News Channel 12 (2x) and a short documentary) 4 to 5 events per year hosted by the IIF 28k Vertical miles skied by Brian Greenberg during his last day of 2014 skiing in Stowe, VT WHAT’S NEXT: We have lots of exciting events and projects coming up in the near future! These include the “IBD Won’t Stop Me” project for World IBD Day, our 2nd “Annual Cycling the Big Apple’, the 3rd Annual “Climb for Crohn’s & Colitis” and our next round of the “Intense Intestines Scholarships.” Our “IBD Won’t Stop Me” project for World IBD Day will consist of a video showing the many faces of IBD and how each of us fight a specific battle with our IBD. Some of us just want to be able to walk our dogs or enjoy a day with our kids, others want to climb mountains or swim across a lake. No matter what that personal goal may be and what your battle may be—we all want each other to achieve them. And we at the IIF want to hear how IBD Won’t Stop You in our project. In May, we have two events to help raise awareness for IBD and critical funds for our programs. The first is our 2nd annual “Cycling the Big Apple for IBD” ride as part of the Five Boro Bike Tour, which is a 40 mile cycle through the boroughs of NYC. In a single year, we’ve already grown from 4 to 14 riders cycling for the IIF’s cause! Our second is our 3rd annual “Climb for Crohn’s & Colitis,” our annual World IBD Day event, allowing us to continue raising awareness for World IBD Day. We were also happy to announce an expansion in our “Intense Intestines Scholarship” program for the upcoming semester. The IIF was previously granting one scholarship per semester, but with the amazing support of the IBD community and others, we will now be awarding two scholarships to deserving young IBD adults to help them earn their degree! Closing: It’s a brave task when you’re airing your dirty laundry and that is why I’m so proud of IBD and ostomy patients who have embraced our mission to Never Stay Quiet. I’m extremely honored to be a part of the IBD and ostomy communities. Over the last two years I have met countless people who have said that the IIF has inspired them. The truth is that everyday someone in the IBD and ostomy communities inspires me and the IIF to continue to help as many patients as we possibly can. I want to thank everyone for supporting the IIF to this point and your continued support in the future.
LESSONS LEARNED FROM A LOST COLON My Journey From Illness to Gratitude By Lois F.
A woman discusses how her life-long battle with Crohn’s Disease not only brought her blessings, but also brought a platform to share her positive outlook on being diagnosed with inflammatory bowel disease. “You have Crohn’s disease.” Those paralyzing words are as clear today as they were forty-eight years ago. I was seventeen, sick, and no one was listening. Instead, the severe diarrhea, alarming weight loss, crippling abdominal pain, fevers, and arrested physical development were ignored. A sigmoidoscopy was performed by a dismissive gastroenterologist. Excruciating abdominal pain were later diagnosed as appendicitis, and I was rushed to the hospital for an emergency appendectomy. Accepting the diagnosis, weighing 62 pounds, not being able to return to school due to my fragile health, and adjusting to a restrictive diet proved difficult. Steroids distorted my face. Six months later a bowel resection became necessary. The night before surgery coincided with my high school prom, and my mother expressed sorrow at my missing this event. After surgery, I gained weight and my stunted physical development rebounded. A year later a major flare occurred, college courses were curtailed, restricted food, and steroid therapy resumed. Over the next nineteen years, my remaining colon and rectum were assaulted. Knowing the exact location of a bathroom wherever I went was crucial. I carried spare underwear because humiliating bowel incontinence was a daily occurrence. Sitting through a movie or restaurant wasn’t possible without running to the restroom. My world narrowed until the only place I felt secure was my bathroom. At thirty-four, ostomy surgery was recommended and I recoiled in horror. To me it meant being mutilated. Bolting from the doctor’s office, I spent two years in denial until I realized watching people’s feet go by from a bathroom stall was not living. A total proctocolectomy and permanent ileostomy resulted in the removal of the diseased colon and rectum; the inch of small intestine brought through the abdominal wall created a stoma. For the first time in nineteen years I experienced a life free of pain. No longer did I have to worry about finding a bathroom, or my body betraying me. Crohn’s disease and ostomy surgery have taken me down paths I never would have traveled. They allowed me to discover talents I didn’t know I possessed, introduced me to amazing individuals who made a lasting impression on my life. Refusal to take no for an answer from the producers at the Sally Jesse Raphael show resulted in a frank discussion about Crohn’s disease, ulcerative colitis and ostomy surgery on national television! I’ve shared my story with medical and nursing students and practicing nurses. Working with my state representative and testifying before legislative committees, afforded me the opportunity to understand the process by which a bill becomes law. In the middle of a crisis it is difficult to ask what benefits this situation might ultimately bring us, what gifts we might receive if we are willing to see the incident in a different light. When we change how we view our situation, our life automatically changes. We can learn to be grateful. I no longer resent Crohn’s disease or miss my colon and rectum. I’m grateful for the lessons and gratitude. The gifts I’ve gained far outweigh their loss. You can live life to the fullest without a colon and rectum. And I’ll never have to go through a colonoscopy again!
DRESSING FOR SPRING
By Gaylyn H. FASHION EDITOR GUTLESSANDGLAMOROUS.COM
Despite the polar vortex’s lingering temperatures across the US it is still technically spring. And that means we have sprung forward into spring fashion! The spring season means warmer temperatures. Warmer temperatures mean lesser clothes. Just 3 years ago I dreaded the spring. Why you ask? Warmer temperatures meant it was now shorts and skirts weather. When I was diagnosed I of course was put on prednisone. While on it, I developed striations, which basically means I have stretch marks everywhere! I have stretch marks in very strange places and visibly prominent on my legs and arms. Also, while on Humira I developed scars and marks on my legs. My doctor called it something, but quite frankly I don’t remember what he called it. All I know is that I have scars on my legs. So all together it took me a while to bare my legs. But I decided one day hey, who cares! I can’t keep wearing all these layers and burning up during the spring/summer because I care what others think! Lol! People will sometimes ask me what’s on my leg or what happened? But to me, the scars on my legs are just yet another reminder of what I have been through and how I have overcome. So now, I love the spring! Springtime means lighter colors and hues. When I think of Spring I immediately think of flowers blooming, allergies, and pastels! Who doesn’t love pastel colors. Soft shades such as lilac, baby blues, light pinks, and mint greens are perfect for spring. You can pair pastels together and most of the time it will always work. Here are a few of my favorite spring time looks! Crop it like it’s hot! The crop top is still trending. As an individual with IBD a crop top can be scary and showing your stomach can be quite challenging. However, the crop top isn’t always about showing off your midriff. Pair a crop-top with a high-waist skirt or pant in which very minimal or no skin is showing. I encourage you to embrace the crop! A popular spring trend this season is mixing patterns bold, colorful prints and patterns. It is not as hard as it looks. Animal print on top of animal print. Florals on top of florals. The goal of mixing patterns and prints is to highlight the contrasts. Keep the look flattering and versatile. Have fun with details and do not overdo it. For a put together look follow a theme of colors. I love a good maxi! A maxi- dress is a go to style piece for any girl. Maxi dresses are perfect for spring and summer weather. They are also perfect for anyone with IBD for a myriad of reasons. Haha! I have at least a dozen maxi dresses for any and every occasion. Maxi dresses are comfortable and chic. I am pictured here in a solid print maxi with open back. Stripes are also a favorite for Spring. Stripes are bold in any color. My favorite are black and white stripes. It brings together a popular Spring 2014 trend with my favorite style staple which is “black and white” which I have previously stated, will never go out of style! Be careful with horizontal stripes, the placement of the stripes can sometimes be somewhat unflattering. Vertical stripes are elongating. I encourage you to step out of your box. Fashion isn’t always wearing the latest trends. Fashion is being able to wear what you want and being comfortable and confident. Fashion is experimentation. Experiment with different pieces see what fits you and your personality best. In the words of Tim Gunn, Make it Work!
Young Ostomates Unite
Who: Any young* ostomate
What: Be connected through email or phone with ostomates like you from around the country
Why: Talk to someone who understands and can relate to your lifestyle. Exchange various tips regarding social life, dietary restrictions, output management, and anything else!
How: Register NOW at http://tinyurl.com/youconnectregistration . After a brief phone consultation, you will be matched with a similar ostomate as soon as possible!
Questions? Visit our website at https://sites.google.com/site/youconnect01/ and/or email email@example.com *Define “young” as you wish. This includes babies and those in their high 20s and beyond! ** Please consult your doctor or nurse for reliable medical advice before adopting any new habits.**
GLAMOUR GUIDE: SPRING By Emma C. GLAMOUR & LIFESTYLE EDITOR MYBEAUTIFULMESSYLIFE.WORDPRESS.COM @EMMA_CHAPPLE
Emma C., author of My Beautiful Messy Life, tells us how to not let the spring showers make your whole outlook cloudy; looking forward to those spring break trips can save you from the blues! Less than two months after I received my ileostomy, I hopped on a plane to London. How crazy is that? Was I worried about flying for the first time with this still new and scary ostomy? You bet. I was even more scared for the nearly eight-hour-long flight from Toronto to London. How was my fragile body going to handle it? I’m here to tell you that flights – especially long flights – can be survived! From what to pack to the dreaded security check, I’m here to take you every step of the way for flying – glamorously! – with an ostomy. Whether your trip is short or long, you want to be comfortable. Your outfit should reflect this, and strike the right balance of cute and comfy. A pair of leggings and an oversized tee is a perfect choice. When you’re in your seat for an extended period of time, you want to wear something loose fitting – that way nobody will notice when your pouch starts to get bigger. This may go without saying, but take a big carry-on! I always tend to over-pack when it comes to medicalt supplies (and I’m sure your doctor or ET nurse would tell you to do the same). I’m prepared for anything, whether it’s a short delay or an overnight layover. While my sister tries to stuff her entire makeup collection into the regulation plastic bag, I tend to stick to a few staple products when it comes to beauty. A must for me is a good tinted lip balm. Fresh Sugar Rose lip treatment is my fave! My other products for beauty on the fly? Lancôme concealer, Physicians Formula loose powder, and Benefit mascara. I always make sure my medications and ostomy supplies are visible inside my purse – no hiding them in pockets! Although it would be nice if everybody understood, not all security guards are going to know what an ostomy is. Be up front about it, and rehearse what you’ll say if it becomes a problem. On the same note – pre-cut your ostomy flanges! I usually keep a pair of medical scissors with me, but I always make sure to leave them out of my purse when I fly. It’s no secret that you dehydrate fast when you’re up in the air. When you’re without a colon, it can be even worse. Drink as much water as you can to ease the burden on your body, as well as your skin and lips (now you know why I need that tinted lip balm so badly!). I always make sure to grab a giant bottle of Evian before I board. Once you’ve taken off, relax! My first time flying with an ostomy, I worried and worried about what would happen when I had to use the bathroom. But once I did, it wasn’t that bad (I don’t know what I thought would be so different, but hey, ostomy logic). My general rule of thumb is to go whenever the seatbelt sign switches off. Even if it’s just to check that everything is in place, it gives me some peace of mind. When you’re trapped in a giant cylinder in the sky, you do what you can! Flying with IBD and an ostomy sounds terrifying at first. But with the right mindset and my arsenal of tips, you’ll be soaring with ease!
WE WANT TO HEAR FROM YOU! How did you find out about Companion Magazine? Like us on Facebook and let us know and you could win a Companion Magazine T-shirt! FACEBOOK.COM/COMPANIONIBD Would you like to contribute to the next issue of Companion Magazine? Email us! COMPANIONIBD@GMAIL.COM Comments or Questions? We are always willing to answer and hear what you think about the magazine. What would you like to read about? Suggest a topic! Have a picture(s) you would like to show our readers? Tweet us @COMPANIONIBD Want to check out how we’re staying positive? Visit our Instagram @COMPANIONIBD Do you have a blog that you’d like to have featured on our website? WWW.COMPANION.WORDPRESS.COM Want to know more about Brooke and Kristin? Check out their blogs or find them on Twitter: Brooke: FIERCELYFLARED.WORDPRESS.COM [@BRKLYNBOUNCER] Kristin: UCMEWITHHOPE.TUMBLR.COM [@SEMISWEETSTORY]
Companion Magazine brings the IBD community closer together through shared inspirational stories, informative medical articles, useful advic...
Published on Apr 14, 2014
Companion Magazine brings the IBD community closer together through shared inspirational stories, informative medical articles, useful advic...