THE LOVE ISSUE
NEW YEAR NEW YOU start the new
DO’S & DON’TS
Loving your lifestyle with IBD
STORIES OF SUCCESS, INSPIRATION & DETERMINATION
DIET, EXERCISE & NEW RECIPES
Love & Relationships
how to survive it together
V1, ISSUE 2
THE LOVE ISSUE
FEATURES + COVER STORIES:
personal journeys: being in love with IBD
FROM THE 2 LETTER EDITOR
lifestyle with IBD: advice from allie’s appetite
& OSTOMY 23 IBD dating from a male’s
love & relationships how you can survive IBD together
UP WITH UC 41 GROWING how one man grew up through
his fiancée’s battle with UC
FASHOSTOMY 4 NEW YEAR, NEW YOU! 26 LIFESTYLE: 44 diet, recipe & fitness advice
from Allie’s Appetite
JOURNEYS: GLAMOUR GUIDE LOVE & RELATIONSHIPS 48 30 7 PERSONAL being in love with IBD surviving IBD together A LIST OF 12 IBDates: DO’S AND DON’TS
ON: 33 SPOTLIGHT OSTOMY OUTDOORS
13 InspireIBD: 15 stories of success, inspiration
36 THE IBD DATING FILTER 39 AWESTOMY
LIVING WITH UC
& RAVES 51 RANTS complaints, advice, moans,
groans & inspiration from IBD’ers
LETTER FROM THE EDITOR
dating with IBD can be tough...
Dating with Inflammatory Bowel Disease can be rough, but here at Companion we’ve got your back and your heart. Our first issue was a success. I’d like to start this issue off by saying how amazed I am by the positive response we have received from the IBD community. We are happy to be a part of the movement to help spread awareness about Crohn’s Disease and ulcerative colitis, because they are awful. But your love life doesn’t have to be. Dating with IBD can be scary, what should I tell them, are they noticing how many times I’m going to the bathroom, are they going to think I’m gross, will I ever find love? These are just a FEW of the many questions that we have come across while preparing for our second issue, the love and dating issue. I, myself, am one of the lucky ones. I am blessed to have a boyfriend who not only understands, but has past family experience with ulcerative colitis and ostomies. When I became extremely sick, he was there for me, running me to the bathroom, speeding at illegal limits and putting up with me hogging the bathroom for over a year. I’m not going to say that our relationship has been easy, it hasn’t. We have done a lot of work due to my illness. A lot of time apart, a lot of frustration and our lives have been put on hold until I can get better and overcome this obstacle. I had a lot of anger issues that I was directing at him, because he was the closest person to me. The one who saw me suffer and cry out in pain day in and day out.
BROOKE BOGDAN EDITOR - IN - CHIEF KRISTIN WILLIAMS GRAPHIC DESIGNER EDITOR CONTRIBUTOR
CONTRIBUTORS RASHEED C. TOM H. KELLY C. WILSON G. JORDAN W. ALLIE M. MICHELLE G. AMY B. HEIDI S. JESSICA D. SARAH B. EMMA C. GAYLYN H. DUSTIN H. MEGAN S. EMMA D. BRIAN G. ELIZABETH S.
A lot of the time when he would try to help, I would get frustrated, thinking, “how could he EVER understand what I am going through?” It took me a lot of time, a lot of therapy and a lot of growing up to do before I realized that him understanding my pain wasn’t his job, it was his job to just be there for me, to listen and try to do whatever he could to make me better. And he did. He isn’t perfect, I’m certainly not perfect and the sooner we realized that the sooner our relationship started working again. We currently live together, he sees my ostomy every day, but most importantly, he has chosen to be a strong, mature man and look past my disease and all of these surgeries. We are finally able to start planning the rest of our lives together, healthy and happy. This process has made him a better person and us a better couple. You need to embrace yourself and your health status before you can ever learn to accept someone else into this tough situation. I know plenty of people that have IBD that have beautiful, loving, healthy relationships, even though they are sick. Our graphic designer, Kristin, is one of them. She recently was just engaged to the man of her dreams, her prince charming, who swooped in and saved her from the evil IBD dragon when she needed him most. If you are single in the land of IBD, remember, there is love out there for you. Never settle for less than what you truly deserve. Don’t be embarrassed about your disease, inform dates or possible love interests and help them to understand. You never know, they could have more experience than you think. I hope you enjoy the second issue of Companion Magazine. This issue is chalk full of stories, pictures, trials and tribulations of love, dating and IBD. Good luck out there, IBD’ers! We are beautiful, strong and fabulous!
Brooke A. Bogdan
Founder & Editor-in-Chief
CONNECT WITH US! firstname.lastname@example.org @companionibd facebook.com/companionibd
NEW YEAR, NEW YOU! IBD’ers share their resolutions for a healthier, happier, better 2014.
WHAT I’D LIKE TO DO & BE IN 2014 @RASHEEDCLARKE
I can’t ever recall making a new year’s resolution, because I feel as though human beings are constantly under construction, and there are plenty of moments over the course of our lives when we can and should realize that there is a need for change. Those moments don’t always come soon after buying a vintage poster calendar from Calendar Club. Still, the initial days of January are probably as good a time as any to take stock in our lives, and think about what needs fixing. With all the turmoil that 2013 brought, and considering the far from ideal state I find myself in today, I gave some thought to what I’d like to work on in the year ahead. These aren’t resolutions, per se, but rather areas of my body and personality that I recognize need some work. I want to run again.
The last time I went for a proper run was sometime in February 2013. It was soon after that seemingly normal day that my Remicade gave out, my ulcerative colitis flared up again, and I decided to press on with surgery. Over the last year or so, I’ve sighed at the sight of every runner pacing through my neighbourhood. I used to run on these streets, I used to wave at other runners when we passed each other, I used to wear long tights and shorts and a parka and a toque and run in the winter, I used to show off my football shirts when I ran in the spring, I used to run at midnight in the summer when it was too hot during the day. I want to be able to do all of that again. I want to have pain-free days. I honestly can’t remember the last time I had a pain-free day. On rare occasions I have a little less pain to deal with over the course of a day, or I’ll manage to get through the morning and afternoon without pain before it strike as usual in the evening, but there’s pain every day. Every. Fucking. Day. I want my ostomy reversed and get my J-pouch working so I won’t feel so much goddamned pain every time some stool leaves my body. I want to be able to lie down in bed and feel comfortable, and wake up without worrying about when the pain will inevitably return. I want to be less of a pushover. For years now, I’ve had a hard time saying “no.” I don’t like letting people down, even if it means I have to do things I don’t want to do, or push myself to lengths that are detrimental to my body. I have to get over this, and I will have to say “no” more often this year. If someone feels disappointed with my refusal to do something, I’ll let them deal with it; I have problems of my own that need attention. Also, I recognize the need to be more assertive when it comes to my healthcare. I haven’t done a good enough job explaining the depths of my suffering to my doctors and nurses, and I’ve accepted painfully long waiting periods rather than push for faster action. At the urging of some relatives, I’ve subjected myself to pseudo-scientific “medicine” which to this day has proven utterly ineffectual. I want to end the charade. I want to be an IBD awareness-spreading machine. Too few people know about inflammatory bowel diseases, and those who know some modicum about them don’t seem to take them seriously as medical afflictions. I’ve never shyed away from telling people about my ulcerative colitis or my ostomy, but I think there’s plenty of room for additional publicizing. I will bring up my disease at parties, I’ll tell strangers, and I’ll work the topics into any conversation if I see an opening: “Yeah it was cold yesterday, but I just wore a bunch of layers on top of my ostomy appliance because I don’t have a colon.” All of my targets center around one big picture for the year: In 2014, I want to spend less time surviving my life, and more time actually living it.
Rasheed is the author of Three Tablets, Twice Daily, which can be purchased on Amazon.com.
TOM H. THE CHRONIC ADVENTURER
HAVE A HEALTHY 2014 @FOREVERYIBD WWW.THECHRONICADVENTURER.WORDPRESS.COM
I go on adventures BECAUSE I have IBD as I know my relative good health will not last forever so I need to make the most of now. This attitude started by setting a new years resolution for 2013 to simply “be more adventurous”. I never knew that doing this would help me cycle over 2000 miles. That it would take me from London to Paris on a bike. That it would take me up the highest peak in Scotland, England and Wales within 24hrs. This feeling of achieving things that once seemed impossible is very addictive. So much so that for 2014 I plan on continuing this adventurous spirit, in the hope it will take me the full length of Great Britain on a bike and up Kilimanjaro. You can also be more adventurous in 2014. Being adventurous doesn’t mean you have to run a marathon, climb a mountain or row an ocean. All you need to do is break down the mental barriers that you’ve set yourself by pushing yourself out of your comfort zone, one step at a time. I know that due to the nature of IBD some of you won’t be able to be more adventurous straight away. But you can still write a list of what you’d like to do the next time you are well enough, stuff you’d like to do BECAUSE you have IBD and not despite of it. I wish IBD didn’t make us doubt our abilities but at least when we prove ourselfs wrong it does make it all the more sweeter! It would be great to know what you do or plan to do in 2014 BECAUSE you have IBD. Feel free to tweet me @ForEveryIBD, use the hash tag #BecauseofIBD or contact me at my blog.
PERSONAL JOURNEYS Being in love with IBD can be tough. Especially for your significant other. Relationships and intimacy are possible with Crohn’s, colitis and ostomies, despite the stigmas that may tell you otherwise. These brave lovebirds show how that’s possible.
I was diagnosed when I was 12, which was 8 years ago. My life went from being normal, from being just like everyone else’s life, to being scary. I missed 58 days of school in sixth grade, but I finished off the year. In the past 8 years I have been through a lot of different treatments to try to control my Crohns. In the beginning, we tried things like asacol, Imuran, budenoside and many others. But my Junior year of high school, when I had my first small bowel resection, we started the biologics. I have been on Humira, Cimzia, Stellara, Methotrexate and Tysabri, all of which did not do a whole lot for me. I have now had 4 surgeries, three of which were planned and one emergency surgery to clear an obstruction. In order to get through everyday, I have had to lean on those around me. From the very beginning, my family has been there to support me. My parents have played a huge
part in helping me survive my disease. They support me as I push to stay in school and have spent numerous sleepless nights, keeping me company in the hospital. My disease has shown me how to be a true friend and who may true friends are. I have so many friends who have helped me get through some of the most difficult parts of my life. Over a year ago I started dating my boyfriend, Will. I kept telling him that he had no idea what he was getting himself into, but he assured me that me being sick didn’t matter. That was put to the test when three months into the relationship I had my first surgery. He was wonderfully supportive and only got more supportive the sicker I became. During my spring semester this past year, he would hook me up to IV fluids every single night. He was amazingly supportive and participated more in health than I ever could have asked from a 21 year old guy. Later this past year, I was in the hospital for 5 weeks and he spent so much time walking the hallways and spending the night at the hospital with me. Not only does he take an interest in my health, but he is actually good at taking care of me. I joke that he has a complementary nursing degree, because everyday he flushes my port line and helps me hook up to my TPN each night. To be completely honest, being sick in college has made things extremely difficult, but I am not willing to give up my education because of my health. I have missed school for surgery and to be in the hospital, but I always make it back. I spend a lot of time in my room doing mostly nothing, but that nothing is what allows me to go to class and be an active member of Chi Omega. My life is very different because of my disease and I’ve had a lot of challenges, but I’ve also overcome a lot of challenges. I now know that nothing in life can hold me back and my disease is nothing to be ashamed about. My disease has made me strong and independent and made me the person I am today, and I wouldn’t change that for the world. Since being diagnosed, I have tried all of the Crohn’s medications on the market, and even a couple not on the market, but nothing has worked for me. I am currently off almost all medication and doing bowel rest and TPN, while still in college. I am not allowed to eat anything and spend 12 hours at night hooked up to the TPN. Having to do TPN has seriously put a damper on my social life, but get through it, I bought a cute backpack and have rigged it so I can hang my TPN in it and therefore be able to move around. I was even able to make it to the Hobbit premier, while hooked up to TPN! Last year I started blogging about my disease. I realized that I had a unique story to tell and had valuable advice to give. Even though I am only 20 (almost 21), I have been through a lot with my Crohns and tend to have weird manifestations of my disease. When I flare I get fever, and mouth ulcers, and stuff like erytheum nodosum. I’ve had four surgeries and tried pretty much everything to treat my Crohns, so I had to ask myself,
“why not use my experience to help others?” The answer was so simple. Duh, I needed to blog about everything I had gone through in order to reach out to others! I have met so many amazing people because of my blog and have been able to help people with questions and concerns. Something that I did not expect is that blogging has helped me as well. It has helped me connect with people similar to myself in ways I never imagined, and it has given my disease a purpose. It took me years to feel comfortable enough to share my story, but I am so glad that I have chosen to share with others in my blog (notsonormallife.weebly.com) and various other mediums. So for anyone who has just been diagnosed, I would tell them to use this hardship to show your strength, because “you never know how strong you are... until being strong is the only choice you have.” I now know that I am incredibly strong and will accomplish my dreams, despite having an illness. I always tell people that strength isn’t the absence of fear, it’s the ability to admit you are afraid and keep fighting, so never stop fighting!
FROM THE BOYFRIEND’S PERSPECTIVE
Hi. I’m Will, and I’m dating a superhero. I know. It sounds crazy, but it’s true. Her name is Sarah, and she’s a real life superhero. We first met at a social gathering a year ago at Hanover College in Indiana. I use “first met” loosely due to the fact that I’d had the world’s biggest crush on her since freshman year. It didn’t take long for the romance to kick in, and soon after we were dating. But shortly before we began our journey together, she warned me about her illness. She told me that her Crohn’s disease was serious, unpredictable, and often times scary. What she didn’t know it at the time was that when my heart finds a home, it doesn’t let go. Ever. I will never tell anyone that it has been an easy time spent together. I have driven thousands of miles to different hospitals and doctor’s offices. I’ve lost about a month of sleep total and downed more coffee than I could have imagined there was in the region. I’ve been a counselor, a driver, a nurse, a lover, and a friend. However, more than anything else in the world, I have always considered myself lucky. Sarah has shown me what true courage is. I could complain about the lost sleep or the inevitably higher blood pressure, but when I see her struggling through a life that has never given her a break, my own sacrifices become one hundred percent worth it. It is the appreciation and love for Sarah, paired with a strong faith that God has a purpose in all of the pain that keeps us fresh and strong as a couple.
Yet even as a strong couple, things can become very tiresome. There are couples out there that get tired of their jobs, or their apartments, or their neighbors; and then there’s Sarah and I. We get tired of not knowing. Never knowing. Sarah’s Crohn’s is at a point where all well known therapies have been exhausted. The searching has become grueling and at times hopeless. This is where we: as boyfriends, girlfriends, husbands, wives, and friends, are called upon to be the very rock and foundation that holds up those we love who are feeling down. It could be a joke, a kiss, a smile, a long lingering hug, or even just being a goofball. It can be hard to keep the positivity alive, but it is also completely essential. Being positive, loving, and encouraging is sometimes all that stands between where you are and completely letting go of hope. I am not an evangelist. I don’t like to push my views on others. I will say however, that the central and unwavering strength that continues to push me to be an advocate and supporter of Sarah is God. Whether I am surrendering myself through prayer, or just reading passages from the gospel quietly at night, my Christian faith has kept me going. It provides comfort for both Sarah and I, even when the jokes and goofiness fail to dampen the reality of the situation. We both know in our hearts that there is a greater purpose to the pain that she feels. Her blogging has already touched many hearts with encouragement, humor, and advice. She never once has failed to offer her experiences and love to others who are suffering alongside her. Sure, I’d like to think that I’m a huge part of getting her through each day, but that would be a lie. The truth is that I consider myself to be the lucky one. I am dating a strong, powerful, and driven woman who cares not just for me, but also for all who suffer. She has given me more than I could ever give back to her in this lifetime. Being the man/ woman behind the scenes of your personal superhero is an honor worth fighting for each day. Sarah’s attitudes and actions are what led me to the reality that I am not at all dating a Crohn’s sufferer. I am dating a superhero; and for that, I consider myself to be the luckiest guy in the world.
BEING IN LOVE WITH AN OSTOMY
My name is Michelle Gellert and I’m 22 years old with Crohn’s disease. I was diagnosed with Crohn’s disease at the young age of 8 years old. My Crohn’s became extremely severe once I turned 18. I’ve had 7 major surgeries in the past 4 years. My most recent one was a total colectomy, resulting in having my permanent ostomy. Living with Crohn’s disease has affected my life in numerous ways. The most important being it has made me very emotionally strong and it has also taught me to never judge others. Crohn’s is an invisible disease...you never know what a person could be going
through, regardless of how physically flawless someone may appear. About two years ago I met my boyfriend, who I am still currently dating. I remember a few months into the relationship when things between us were starting to get serious, that I was going to have to tell him about my ostomy. The anticipation was driving me crazy. Would he be grossed out and think I’m not normal, or would he love me regardless? I definitely had my doubts. After I finally told him about my ostomy, and explained that I would not be here today without it, I could exhale and go on with my life. Surprisingly he said it did not bother him at all and that it did not affect our relationship in any way! The only change he had to accommodate with regarding my ostomy was my diet. He promised to stick by my side through it all. Only time would tell if he meant what he told me and it did. We’ve now been dating two and a half years, and I couldn’t be more thankful. My colo-rectal surgeon is absolutely amazing and gave me a chance to live my life again, without running to the restroom 20 times a day. I have learned to rock the bag and to never be ashamed of my ostomy! My best advice would be to always let your significant other know about your ostomy in an early stage of the relationship, especially before intimacy is involved. That way if the person you are wanting to date turns out to be a jerk because of what you have, you will not feel as attached and can move on easily knowing there are plenty of guys out there who WILL accept you and love you unconditionally with an ostomy.
By Kristin Williams @SEMISWEETSTORY UCMEWITHHOPE.TUMBLR.COM
Don’t lie. You only put yourself in a hole. Do choose the restaurant. Do plan activies before dinner, not after. Don’t panic when your safe food has been removed fom the menu. Don’t be afraid to tell your date you’d rather go somewhere else. Do ask the waiter what ingredients are in a dish if you’re unsure. Don’t let your date order food for you (unless they’re well aware of your trigger foods). Don’t rush yourself getting ready -- it only adds stress (and symptoms!). Don’t worry about the restaurant noticing your numerous trips to the restroom; you’re probably the only one noticing. Do open up.
Do you have any DO’S or DON’TS? Share with us to help inspire or make others laugh.
Don’t be afraid to cancel -- if he or she really likes you, they will understand. There are other ways to reassure him or her that you’re still interested. Don’t be afraid to have a dinner date in your own home. If that’s where you’re comfortable, stay there. Do cook a special dinner for him or her. You have total control over the food! Don’t be afraid.
LIVING WITH UC:
THE GOOD, THE BAD & THE UGLY A brave woman describes her life and journey with ulcerative colitis.
If you would have asked me a month ago what ulcerative colitis was, I would have looked at you with a blank stare and hoped you were going to explain yourself. Now, I live with it on a daily basis (getting the blank stares and figuring out what to do with this disease). I am not a medical doctor, nor do I have any medical background. This is merely my story and how I’m muddling through this frustrating, awkward, and serious disease. There is no cure. It sucks. I’ll just put it out there....it really sucks. Going from being a 31 year old female enjoying life, to life stopping because you can’t be away from the bathroom for more than 30 minutes is more than difficult. I was diagnosed on June 3rd. From that point on, my life has been a whirlwind. I was first put on a medication that I ended up being allergic to. I didn’t know this at the time so took it for 10 days before having to go to the ER for severe dehydration. After starting a new medication, two days later, I was able to leave my bed for the first time in almost two weeks. The following Monday I started back at one of my three jobs. I am forever tired. But because of one of my medications, I have trouble falling asleep, staying asleep and getting up in the morning. My stomach makes the weirdest noises on earth. It bubbles, it gurgles, it bloats and it’s all-around unpleasant. But here’s the kicker, someone walking by me on the street would think I was “fine” because I look “fine”. The hardest part is explaining this disease with no cure to other people. Why can’t I eat all the food at that cookout? Well, because I don’t want to be attached to my toilet for a week. I lost 13 pounds in less than two weeks. Now I hear from people that I look great....I can tell you I would rather have those 13 pounds back and not be dealing with this than to look great. I’ve done a lot of crying, a lot of praying and a LOT of asking “why me?”
Here is what I have come to realize: I will deal with this for the rest of my life. Yes, that seems very simplified and common sense, but that’s a big realization. So what can I do? Live my life day-by-day. I am so thankful this new medication is working so far and that I am able to get out of bed. I am thankful that although I can eat about 10 things right now, that I am able to eat. I am thankful that I am able to take walks of about 20 blocks, because at least I can be outside. Yes, I have to take naps at times and the medications are giving me mood swings, but I have a wonderful family that has stepped up to help me and friends that I cannot even begin to describe how supportive they have been. My parents have dropped things to help me, get me food, pick up meds, take me to the ER and stay with me so if I needed anything, no matter the time, I wasn’t alone. I have friends who consistently ask how I am, stop to get me flavored waters when I was sick of plain water, have taken me out just to get me out of the house and stop by to make sure I’m okay. Through all of this, my Through all of this, my blessing is realizing what amazing people I have in my life. Yes, a blessing is realizing what amazing people I have in my life. Yes, there will be bumps in the road. I am new at this so I expect to make mistakes, have “flare ups” and eat something wrong. But I will make it. I will take each day as a new day that I am blessed to be alive and make the most of it. Believe me, that doesn’t mean I won’t cry about it, I won’t get frustrated or upset that I have to live with this, but it could always be worse. If you’re dealing with UC, you are not alone. If you aren’t, be considerate of people who are and know that it’s a daily struggle. Just because someone looks fine from the outside doesn’t mean there isn’t anything going on in the inside. For more information on UC, please visit www.ccfa.org.
INSPIRIBD These brave IBD’ers share how their diagnosis inspired them to make a difference for others who are suffering with inflammatory bowel diseases.
I’M STILL ME
I was diagnosed with Crohn’s when I was 17. Going into my senior year with a case of the runs wasn’t my ideal situation, but I made a promise to myself I would do whatever it takes to graduate college, no matter how ill I became. I would say in my lifetime, I’ve been at least 3 different people living inside one body. 1. There was pre-diagnosis Kelly – uneducated & naive. If you would have asked me what I knew what chronic disease meant, I would not have been elicit any sort of response. I didn’t know what it meant to be empathetic, only sympathetic. Big difference. 2. Then there was post-diagnosis Kelly. This Kelly was lost for a long time. I didn’t have a lot of friends to lean on that knew exactly I was going through. I felt like I was living in someone else’s body that was not my own. I felt most alone in my entire life during this time, until I had
met some amazing life-long friends at my CCFA-WI chapter. I’ve also lost some friends along the way, namely the ones who have proved to be not so supportive of me during my times of isolation and social anxiety. This brings me to today. 3. I’m not sure that present Kelly has a special name like “pre or post diagnosis”, because I’m constantly learning things every day; about my diseases, about my support, but mostly about myself. At the time of my diagnosis, there wasn’t much information that told me what to expect, what I was in for and that it would take me almost 2 years to meet someone my age with the exact disease I had. There isn’t a number I would give you for the amount of times I googled this disease. Two years after my initial diagnosis, during a series of colonoscopies/endoscopy, it was then my GI told me that I also had Ulcerative Colitis. Most people with IBD either have one or the other, I had both. I was crushed. In college, I was lucky enough to have roommates that understood I didn’t feel well a lot of the time. There are many times a day when I am in a visible flare that I hear comments about my appearance. Most of my friends knew I had a “condition” that causes me to have severe pain and periods of time that I may be sick enough to visit the hospital for several days at a time. They may not have understood the disease, but they understood I didn’t feel well & they treated me well – stayed in with me and watched movies, played Mario Card and did fun things that didn’t always involve eating or drinking. That being said, there were of course, and always will be, people who never understood my condition, and that has been a challenge for me. (That’s something that hasn’t changed). I was far from being the normal college student: I had a huge Tupperware container full of prescriptions & had to carry around a pill box that beeped every 4 hours to remind me to take my pills. At this time of my treatment, I was easily taking upwards of 30 pills a day in addition to the IV therapy (Remicade) once a month which required me to visit the hospital for 6 hours while the drug was being infused. Infusions made me tired, sore & cranky. There was one winter I had a simple but unexpected surgery that in turn required me to sit on a donut for a month (yes, I even brought it to class). Still, my roommates were accepting. I can’t look back and honestly tell you college was the greatest experience of my life, but being able to deal with 2 terrifying diseases on my own was one of the greatest gifts I could have given myself. When I moved away to college, I made the promise myself I would make it all 4 years and not give up no matter how sick I got. I’ve been independent my whole life & was determined that my disease would not take that away from me. Despite the factmy mom & dad were not so supportive of the idea of me doing this 2 hours away, they certainly were supportive of my dreams. In 2010, I graduated, with honors(!) after deciding to enroll in a 5 year program in order to get the two degrees I wanted. I didn’t have a choice of the things that Crohn’s has robbed of me growing up, but I did have the choice of whether or not I would let that control the rest of my life.
I may not be the person I was before I was diagnosed and I may not be the person I was after I was diagnosed, but they have started to blend together. One thing I know for sure: a huge part of who I am today is a result of the two. It’s comforting looking back and reflecting on how much I’ve grown I’m so much more today than I was then. I’m much more aware about my surroundings and the world I live in. I’m sure a lot of that has to do with maturing and growing with age, but due to being diagnosed with something as scary as I was at such a young age, I was forced to mature quickly. I left pieces of myself along the way, good and bad. But today I’m able to advocate for myself. Autoimmune disease is a daily battle, and one must be willing to fight for their bodies every day, knowing that some days you may not come out on top. Still, you have the choice to become a victim of it, or rise above it and find new ways to make you stronger (as a person and a patient). Some of the ways I’m able to do this now is being an advocate for my IBD community and participating in fundraising events like Team Challenge. I’ve recently started #purpleproject, a blog that lets others see what a “typical” life with chronic illness looks like from the outside, while training for fitness events, namely halfmarathons. I’m not a naive 17 year old anymore with no knowledge of my diseases. Finding ways to mentally beat your illness can be physically and emotionally exhausting, but somehow most days I’m able to see the positive through humor and the support that stands behind me. Today, I’m still advocating, still hoping, still doing absolutely all I can to raise awareness for autoimmune diseases, in hopes that someday I’ll be able to say “I used to have Crohn’s.” Although I may never understand the wonders of the human body or why I have a genetic disease that no one else in my family suffers from, I understand the most important thing: Throughout this all, I may have strayed away from my true self at times, but I never lost myself completely. I’m still me. You can find Kelly and read more about her advocacy work online through her social media and web sites: Twitter: @girlsgotguts Web: kellyontherun.com Instagram: instagram.com/jojocrabb Facebook: facebook.com/kellyontherun
A SICK KID WITH A HEALTHY HEART
My name is Elizabeth and I am from Mobile, Alabama. I was diagnosed with Crohn’s Disease at the very beginning of my sophomore year in high school. My story is a lot like a lot of people who suffer with IBD. As a child I have always had stomach problems. I had my first colonoscopy in K-5 because of my frequent constipation and diarrhea spells only to be misdiagnosed with IBS. My stomach problems would come and go over the years but when I woke up from surgery in 8th grade after getting my bile leaking gallbladder out something wasn’t right. My joints were in immense pain and I couldn’t stop throwing up. No doctor could connect the puzzle pieces together so ever since then I started writing about my journey in a journal and eventually started a blog. In 2011 I was 85 pounds thinner and I was finally given the diagnosis of Crohn’s Disease. Since then I have accumulated a variety of other diseases in addition to Crohn’s, but that hasn’t stopped me from spreading the word about Inflammatory Bowel Diseases. I have become the honored hero of the Gulf Coast for the CCFA, I have helped start support groups and raise awareness in any way possible. The year 2013 has come and gone in a blink of an eye. I’ve accomplished a lot in the year 2013. I became an official member of the national high school sorority Delta Beta Sigma at the beginning of the year. I applied and got accepted to several internships and volunteer organizations at hospitals and got to help make some other sick kids live’s a little bit easier. I went to Camp M.A.S.H(Make Arthritis Stop Hurting)as a junior and met several life long friends also battling arthritis and other related diseases. I’ve become even more involved in the CCFA & I even got accepted to be on the Ronald McDonald House Red Shoe Krewe where I help family’s who are also struggling to care for a sick child. I also got my license at 17, something I never thought I’d be able to do because of my health. I made several academic accomplishments. I’ve applied and been accepted to colleges. I was voted Chaplain of my the band for the second year in a row and was voted Chaplain of my senior class. I was admitted to the hospital 3 times this year during most of my Summer but I didn’t let my diseases hold me back. I was also DX with another disease, Endometriosis. I’ve gained and lost doctors about as frequently as I gain and lose weight. I’ve also met and lost friends. I’m not happy about the friends I have lost but I know that everything falls apart and comes together for a reason.
I think I’ve finally found out who I am in this world after a lot of internal conflict and in 2014 be prepared to see the Elizabeth I’ve always wanted to be. I am prepared to graduate high school and go to college to become a nurse and eventually a nurse practitioner so I can offer my empathy and care to children who are also battling to be healthy again. Young people who are also battling IBD and who have yet to get into remission: Do not give up. A new year offers new hope. I never thought 5 years ago I would have accomplished so much while being sick but it’s possible. Believe in yourself and know that your loved ones and the chronic illness community is believing in you!
MRS. UNITED NATIONS INTERNATIONAL 2013 FACEBOOK.COM/EMMADALTONMRSUNI
My name is Emma, I’m a Sculptured Nail Artist, nails are my passion and my obsession! I’m the proud owner of HandzUp Nail Studio, (www.handzup.co.nz). I work from home, I’m a wife to my best friend and mother of 2 beautiful daughters aged 11 and 7, Lilo our cat and newest addition to our family, Chloe our puppy. Almost 5 years ago I was diagnosed with severe ulcerative colitis. I was diagnosed with Rheumatoid Arthritis at the age of 19, but relatively healthy until my second daughter was born. First I started getting white spots on my hands, which was Virtiligo, then a year or so later I was hit by ulcerative colitis, Diverticulae and my ileo caecal valve shows deformity. For many months I was in a daze, ashamed, depressed, tired, in pain and not really knowing what was happening to me. I think the only thing I understood was that this is a horrible disease! Often restricted from going out and having a life. Easy for Doctors to diagnose you, but they don’t help much in terms of how to cope with this. It took me years to truly understand what it meant having an incurable disease...I can handle most of what UC throws at me, but baring the constant fatigue and a dash of depression here and there does make life challenging. I’m very privileged to be able to work from home which helps when I’m in a flare-up. In my late teens I entered a few beauty pageants and have always loved the pageant world. Won a few, but never got much further due to my height.
Through my work I often meet very interesting people and I sponsor New Zealand Beauty Pageants. I’m the official sponsor for Miss World New Zealand, Miss International New Zealand, Miss Junior New Zealand and many more. I had the privilege to do Mrs. New Zealand 2012’s nails and we got chatting, as you do! She suggested I enter and thought I’ve got nothing to lose. Besides, what a great way to finally announce to the world that I have UC and to create awareness. Last year before the Pageant I had a flare that lasted for 7 months. It was hard work and energy levels low, but I did it. I was crowned 2nd runner up and won the title, Mrs. United Nations International. This was a great personal achievement for me and created wonderful memories. I’ll cherish them forever. I was also approached by IBD New Zealand to be one of their Ambassadors. The last 4 months have truly been an incredible journey. Today, I find myself stronger than this disease and more determined than ever before. Being able to help others is a blessing so don’t let anything ever stand in your way. Just because you have an incurable disease, does not mean your life is over. Get out there and make your dreams come true. Remember, even in your own small way you can make a difference. Don’t wait for things to happen, go and make it happen. One day I’d love to be able to travel the world and help even more people empower themselves with UC and Crohns, but for now I’m taking on New Zealand. Wishing you all a healthy and pain free journey.
I was diagnosed with Ulcerative Colitis in June of 2010. It took 2 months of failed antibiotic treatments and painful stomach cramps for my doctor to refer me to a GI doctor. After my first (of 3 total) colonoscopies, the diagnosis came in. With a low dose of medicine (Asacol) I was able to stay symptom free for about a year and a half.
In the fall of 2011, my symptoms came back with a vengeance. I lost over 30 pounds in about 6 weeks. I couldn’t work, couldn’t eat, and couldn’t sleep for more than an hour at a time. The next year would be benchmarked by failure. Steroids failed (but not before giving me acne), Remicade infusion therapy failed, 6-mp failed, Rowasa failed, Asacol failed. Even the relationship I was in at the time didn’t survive. This flare up was taking a toll on my physical and emotional state. The little things that meant so much to me, like sitting at the Thanksgiving table with my family and enjoying their company and this great meal, were taken from me. One bite of turkey and it was the same intense pain and cramping. I swear if I drank one more glass of lemon-lime Gatorade I was going to lose my mind. Still, to this day I can’t drink that flavor. Unless I was in my apartment, on my couch, I was nervous. Nervous for when that next cramp would hit and I would have to run for the bathroom. Would I even make it to the bathroom? There were definitely some close calls. Despite my usual positive outlook on life, I was beginning to get desperate. In October of 2012, my GI doctor sent me to another hospital to get a second opinion on treatment options. The GI at UCI Medical Center in Orange met with me and instantly told me I needed a flex sigmoidoscopy. While I was waiting for the room to be prepped, she had the surgeon come in to talk to me for a brief consultation. At this time, I had already begun researching the J-Pouch surgery on my own. It was time to get my life back and stop being chained to the bathroom. I went in to see the GI doctor on Friday, October 12th, and I scheduled my first (of 3) surgeries for Tuesday, October 16th. The following 5 months consisted of 3 surgeries to remove my colon, rectum, and construct the J-Pouch out of my small intestine. I was nervous to have an ostomy bag for almost half of a year, but waking up from surgery without symptoms of Ulcerative Colitis was such a relief. After the pain from surgery subsided, my quality of life was instantly transformed. With that being said, it was the most physically and mentally challenging period of my life. Learning how to change an ostomy bag, learning how to walk again (3 times), and
figuring out how my body is going to function was tough. If it wasn’t for my new girlfriend who slept in the hospital room with me every single night (we started seeing each other 2 months before my first surgery), my friends, or my family I would have been lost. They really helped me keep my trademark positive attitude towards everything. They were a great support system. It has been almost 1 year now since my 3rd and final surgery. Since the surgeries I have been able to connect to other patients with a similar diagnosis that are going through the surgeries. I always tell them the same thing, your attitude makes the difference. You need to keep your attitude positive and you need to keep a sense of humor. While in the hospital, I decided to start making some changes. I wasn’t satisfied with my professional life and thought that I am getting a fresh start with my health, my career deserves one too. I started studying for my real estate exam while I was in recovery after every surgery. After my 3rd operation, I took, and passed my real estate test. I have been working as a Realtor for RE/MAX ever since. In addition to my professional success, my personal life has been very fulfilling as well. I have been given the opportunity to connect with people that are going through the same thing I went through a year ago. It’s the one thing I wish I had when I was going through my surgeries. I watched YouTube videos of young people changing their ostomy bags and talking about their J-pouch function, but I didn’t know anybody going through it I could actually talk to. Now I have no problems sharing my story or how I used to change my ostomy bag, or showing what the surgery scars look like a year later. My advice to anybody thinking about getting the J-pouch, do it! Talk to a surgeon or even two or three and find one you like. Sure, there are risks, but in my opinion they greatly are outweighed by the rewards. I have truly been given a new lease on life. I am building on an already successful career. In addition to my professional life, my personal life couldn’t be better, I am still in my relationship that began right before my first surgery and surrounded by supportive people. In return, I am trying to be that support system for anybody who is going through what I went through. I want to be an example and show that life after diagnosis can get better. Stay positive!
DATING WITH IBD & AN OSTOMY:
A MALE’S PERSPECTIVE
By Brian Greenberg @BRIANIIF WWW.INTENSEINTESTINES.ORG
Dating is hard. Let me rephrase that: Dating is an exhaustive, frustrating and difficult process for most people who tackle it. So it must be impossible when you have Crohn’s disease and an ostomy, right? Not exactly. I’m not saying it’s effortless but having IBD and an ostomy doesn’t mean the end of fulfilling relationships. I’d like to share some of my experiences with you that, honestly, haven’t always been easy. Perhaps they can provide a sense of relatable relief. I didn’t date much for the two years leading up to my ostomy. When I did, I kept things simple with the girls I dated. Mainly it was because my Crohn’s was really bad at this point and I figured it would make life easier if I never had to get into a serious conversation about my IBD. It worked for a while, but I never got what I really wanted from any of the short-term relationships. They felt incomplete and didn’t go anywhere. Finally, at 28, I realized that I couldn’t live like I was anymore. I had a low quality of living and it was time to get an ostomy. I had put it off for three years in order to be normal. Just as any person would be, I was nervous and did not want to have an “ugly bag” on my body. Like many IBD patients, in my mind an ostomy would be the end of relationships for the rest of my life. Oddly enough I found out very quickly that an ostomy wouldn’t keep me from dating. A girl that I had been chasing for a while finally said yes to going out with me on November 7th, 2010. This was two days before I was going to have my ostomy surgery. She knew about my Crohn’s disease and her father has ulcerative colitis, so she had a general idea about what IBD is. Still, she didn’t know how bad my Crohn’s was or what my surgery was going to be in two days. We went out for my “Day of Food,” which I nicknamed in order to make the date feel a little lighter.
To my amazement, everything went really great. I had to take a large amount of Imodium just to leave my house but it was worth it. We ate all kinds of food and went from restaurant to restaurant with short breaks in between. Finally, at the end of the night I decided to tell her I enjoyed the day and would like to see her more. When I told her, she repeated my sentiments. Thus, I didn’t want to keep the entire truth about my upcoming surgery from her. After I explained everything to her, she got out of my car, hopped into hers and drove home. I walked into my house smiling from ear to ear, knowing that an ostomy was not going to keep me from dating right from the start. Is this the norm? I don’t know, but it can surely show you that an ostomy will not keep you from dating at all. You just have to have confidence and timing has to be right – par for the course with dating anyway. While that relationship didn’t work out (for non-Crohn’s disease or ostomy-related reasons), I have since been lucky enough to go on dates with other amazing women. All of whom have been great and understanding of my IBD and ostomy. Now, I have an amazing partner in my girlfriend Lisa. She has understood right from the start (and I really mean right from the start). Our first conversation about it took place on our fourth date, when we went out for barbecue. We were still in the “early dating phase” where you ask deep, interesting questions to learn about one another. Lisa asked me to tell her something I hadn’t told her yet about myself. With a beer in hand, a whirlwind of thoughts circulated through my head. She’d opened the door for me to tell her I had an ostomy. She knew that I have Crohn’s and started my own nonprofit for IBD but not much more. She didn’t even know the name of my organization. I was in deep thought and she saw it. She told me to spill, so after stalling a little longer, I took a deep breath and went for it. After that conversation we shared a surprisingly comfortable laugh. It felt good to release those anxious feelings. As you can imagine, after this conversation (the easiest I’d I ever have about my ostomy with a girl), I wanted her to stick around. So far I have managed that. She’s been completely understanding about everything that has to do with my IBD and ostomy, from stops at the bathroom and pulling over on the side of the road to the leaks and having to change my ostomy. About six weeks into dating I got sick. The greatest fear I had was that if I went to the hospital Lisa would head for the hills. She’d been amazing with everything already but I was terrified that this was too much, too soon. Every day after work for the rest of my eleven-day hospital stay Lisa came to visit me. She even came on the weekends. We watched movies, hung out, walked the halls and just made the hours pass together. Still, I was nervous about it.
Then, something happened that I was not ready for. One of the residents came in while Lisa was sitting in the chair next to me. Without asking, the doctor lifted my gown and started looking at my stomach and ostomy. I turned white and stiff as a board! At this point, she still hadn’t seen my ostomy and I instantly moved to keep it covered from her. She took my hand and said, “Don’t worry. I knew it was there.” Overwhelmed by a sense of relief, I realized that she did know what was there and I didn’t have to worry like I had. I didn’t even have to try to hide it with her. Since that hospital stay, we’ve traveled all over the northeast coast together. From Baltimore to Toronto, New York City to Chicago, we’ve been on a lot of adventures together in the year we’ve dated. My IBD isn’t a factor in our relationship and she manages to take it all in stride. I’ve had a few more hospital stays since March and she has even driven me to the ER. No matter what happens, I know I can just be myself. Best of all, even with my Crohn’s disease and ostomy I feel comfortable with Lisa. If I need to empty my bag, she doesn’t care. If I have to change my ostomy, she tells me to go take care of it. If I am down about anything, I can count on her to be there for me. In my experiences, I found that the best advice is to never let your IBD or ostomy define you – and make sure that it doesn’t define your relationship either. It has to be taken seriously but you can also find ways to keep it light, also. Trust me, we care about everything much more than the other person does. So, find a way to not sweat it and be yourself – if they’re the right person, they will be happy just to have you. When you find the right person, you will know it. “Your Crohn’s and ostomy aren’t going to keep you from meeting the right person. They are going to keep you from meeting the wrong person.”
IBD LIFESTYLE WWW.ALLIESAPPETITE.COM
Allie M. from the popular blog Allie’s Appetite, tells us how dating, exercising, running and being in love all while balancing life with ulcerative colitis is very possible.
My name is Allie, I’m 27 years old and I was diagnosed with UC about six years ago during my sophomore year of college. Being someone who has always been so passionate about keeping my body in good shape via nutrition and fitness, I was a picture of health. So when I started experiencing the not-so-glamorous symptoms of proctitis shortly followed by a colonoscopy that confirmed an official diagnosis of ulcerative colitis, the pieces didn’t seem to add up. Part of me was in shock, and of course, upset, but part of me was relieved it wasn’t something life-threatening like cancer, as Dr. Google had me believe. Of course, back then my symptoms were easily managed by the fun little drug called Canasa, so I spent the first several months of my journey in denial, convincing myself that I was different than other patients, and that I would eventually grow out of it. I had more good days than bad and thought “chronic, schmonic! This colitis thing isn’t so bad. What’s the big deal anyways?” Reality struck when I was hit with my first big flare just before finals in April of 2007. I remember feeling like all hell broke loose overnight and my life was actually coming to an end (Yes I can be a little dramatic). How could one little body possibly need to poop THAT many times per day and who knew that sort of pain even existed! It was awful. I was living in an off-campus condo with my then-boyfriend and two other roommates at the time, and we only had 1 bathroom to share between the four of us. After too many mornings of jumping out of bed in a panic just to find the bathroom in use (that never
ended well), I decided to move home with my parents and commute to class for the rest of the semester. The only two things I could eat – very literally – were bananas and yogurt, but not right before getting in the car or going to bed. My mom had to drive me back and forth to class (45 minutes each way) because even the slightest movement of moving my foot from the gas to the break made my stomach cramp up. At one point my doctor even offered to give me a handicap sign for my car so that I could park closer to the door or in faculty parking lots on campus. I think I was in too much in denial to take him up on it. My doctor broke the news that (just as he had predicted) my proctitis progressed to left-sided colitis, and I was prescribed Asacol - the oral form of Canasa- as a way for the medicine to reach my entire colon. Within a week of taking Asacol, my symptoms went away almost completely. I gained the 15 pounds back that I had lost, my fevers and night sweats disappears, and the only time I had to spring to the bathroom was when I attempted to go for a run. Yes, I am one of those crazy IBDer’s who runs. And yes, I have pooped in a lot of bushes. And on a lot of roads. And a few times in my pants. Once or twice in a parking lot and maybe once off the side of a boat into Lake Champlain. Oh wait – that has nothing to do with running… Running was something that I wasn’t willing to give up. I had been doing it almost daily since high school (although I STILL can’t seem to classify myself a “runner” because I’m not that fast or competitive at all). But regardless, it is part of who I am. After many failed attempts to continue running outside (read: lots of popping squats in bushes) I took it inside to treadmills where a toilet was never more than 20 seconds away. I eventually learned that it took about 1.5 miles of running/hopping of the treadmill/beelining to the toilet before I was good to go, for a few more uninterrupted miles. I always wondered if people in the gym noticed me hopping off the treadmill 56 times within 20 minutes… I spent junior year of college figuring out how to live my life as normally as possible with this illness, and by senior year I felt like I had it down. A few things that I learned having UC in college: 1) Professors are much more understanding than you might think. No one questions you when you tell them you have a chronic diarrhea issue disease. 2) ALWAYS sit on the aisle of a stadium-style lecture hall.
3) Take a few hours one day to explore every single campus building for restrooms. It’s worth it. 4) Tell your friends that sometimes you poop your pants, and when they laugh at you, laugh with them. I mean, come on. It’s kind of funny. 5) Take FULL advantage of the schools exercise facilities and group fitness classes. I feel in LOVE with yoga in college when running and I weren’t getting along. 6) When you take said group exercise classes, make sure you choose a spot near the door. 7) Unless you’re hospitalized, don’t let your disease run your life. It’s important to keep yourself healthy, but it’s also important to keep yourself happy. Live a little! Looking back, I’m SO Glad I didn’t allow my condition turn me into a hermit during those critical, transformative college years. Colitis sucks, but it doesn’t have to end your life so-tospeak. In fact, was during a pretty bad flare that I met my fiancé, Eric. New Year’s Eve, 2007. I remember not feeling well that whole day, but I picked myself up, blow-dried my hair, threw on a LBD and went to a party. Eric and I kissed at midnight and the rest is history. It’s funny that in the moment you think you’re going to look back on those times and only be able to recall how terrible you felt, when in reality your mind remembers the positive stuff better than anything else. I couldn’t even tell you what my stomach felt like in the weeks/months following that kiss because I was too smitten to be distracted by something as silly as my colon. Eric was in college in Florida when we first started dating so I was forced to go visit him every other month until I graduated and was able to move to Naples to live with him. Since then we have lived in Florida together three separate times and made some of the best memories of my life during our time there. Not one of those times was I ever in “remission” and it was never not a struggle living with colitis, but again, I didn’t let my disease control my life. I worked, I built relationships, stayed active, made friends, went to the beach, and established a life for myself despite my illness. It wasn’t always easy, but I had the most amazing side-kick supporting me and encouraging me to keep my head up! It also helped to have the best doctor in the world who responds to emails within 24 hours, and even calls you on his way to the airport when you’re desperate for help. After 5 years on and off medications and supplements that included prednisone, 6mp, colazol, probiotics, psyillum, notryptaline, magnesium and more and never making it fully into remission, Dr. Awesome finally suggested I give Remicade a shot. It was during our third Florida adventure that I began the medication. Due to insurance reasons, I had to travel back to Vermont every 6 weeks for a dose of hell.
Hell. Remicade was hell. They all said there would be no side effects, and they all lied. I felt like I was on chemo (which, technically I was) for 5 months straight. It wasn’t until I came off the drug that I realized how awful I felt. Not to mention, my colon was the worst it’s ever been. After my Remicade experience, I decided to give drugs a rest and focus on holistic therapy. I began acupuncture and forced myself to really crack down on my diet. Having a degree in nutrition has definitely put me at an advantage when it comes to healing myself through diet. I have a pretty solid understanding of how food can impact one’s health, and therefore am extremely diligent about what I put in my body. As you can imagine, I have tried almost everything under the sun in terms of diet modification. While diet alone hasn’t put me into remission, I whole-heartedly believe that proper nutrition can give your body the tools it needs to function optimally. I began eating gluten free the summer after graduation and then cut all forms of added and refined sugar out of my diet shortly after that. Removing sugar had the biggest impact on my colitis, hands down...I really think that it’s poison in my body! I don’t know about gluten because I’ve never taken the chance to reintroduce it. It’s just not worth it to me. Over the years I’ve learned via trial and error what works for me. Right now my diet is pretty much paleo + Greek yogurt + a daily serving (or 3) of chocolate. Veggies have to be fully cooked and fruit in small doses. In addition to eating healthy, I am deeply in love with this little thing called yoga. As mentioned, I began yoga in college, but really became serious about a couple years ago when I took my first class at Bala Vinyasa Yoga in Naples – a Baptiste affiliate studio. Yoga has done wonders for my body but especially for my mental health. I now practice 5-6 times a week from home and I sincerely cannot imagine my life without it. I think it’s a fantastic form of exercise for those of us with IBD because it’s low impact, keeps your muscles strong, and has the ability to put your mind at peace even during the worst of times. It is, albeit very slowly, teaching me how to transition into and out of hard times with grace, taking it one breath at a time.
LOVE & RELATIONSHIPS:
SURVIVING IBD TOGETHER
By Kristin Williams @SEMISWEETSTORY UCMEWITHHOPE.TUMBLR.COM
Dating is hard. IBD is harder. Put those two together, and it may sometimes seem hopeless. It doesnt have to be.
Dating is hard, right? From picking out outfits to finding the “right one”, I’ve never found anything easy about the entire process of dating. Try adding IBD on top of all your dating frustrations. Can’t decide on a restaurant? Great. Well now you have to pick out a restaurant based on whether or not they serve flare friendly food. Found a seat? Wonderful. But it’s across the restaurant from the bathroom, and everyone will see you making numerous trips there and back. Found a date that you want to see again? Okay, now explain why you have to cancel the activities that have a bathroom nowhere around, why sometimes you refuse to eat around them, why you have a puffy face from prednisone, or why you can’t go to a family party at his or her parents’ house (because the anxiety of it will send your symptoms into over-drive). Fear of embarrassment. It’s something everyone with IBD has experienced while dating. When I was first diagnosed with ulcerative colitis in 2007, I didn’t talk to anyone about it --- ESPECIALLY the person I was dating. When I went into remission, it was a thing of the past. I didn’t bring it up. Yet I always had the “what if” in the back of my mind. What if it comes back? And if it does, how will anyone understand? How will I cope with my symptoms and all the limitations that come with them while trying to date someone?
I’ll be the first to say that it took several tries and several boyfriends to even say the words “ulcerative colitis”. When I began to fall out of remission, my first instinct was to shut the door of my apartment and back away into the darkness of it, to my bed and heating pad. My then boyfriend couldn’t understand. He knew what I had, but I wasn’t open about it. He took everything personally, let me push him away, and things went downhill fast and ended abruptly. That was all it took. I knew that nothing would ever work with anyone as long as I had ulcerative colitis. I honestly felt like I would never be able to get close to anyone ever again. I was wrong. If you’re thinking the same thing about yourself, YOU are wrong. When my fiancé came in the picture, I told him I wasn’t looking to date anyone. I told him that things would be more complicated than I even wanted him to understand, and that I didn’t want a relationship whatsoever. I knew what would happen. I knew I would close up and push him away, too. I didn’t want to be unattractive to him. I’m sorry, but it’s just a little hard to feel attractive around someone when your intestines are bleeding and you can’t get off the bathroom floor, or can’t even just remain at the table for a simple dinner. No one can possibly get how many facets of your life are affected with IBD. Relationships are affected to what seems like no end. I tried to push him away, but he stayed. He fought for me. He showed me day in and day out that he wanted to be by my side. He slowly got me to open up about what I was dealing with. He researched it. He told and still tells me how strong I am. During my three year long flare, he was more understanding than I could ever ask anyone to be. He knew I didn’t like to eat out, so most nights we cooked Kristinfriendly food or ordered in so I could be in the comfort of my own home. I simply opened up and told him the things that I needed, such as that. What I’ve learned? Don’t be afraid. It’s okay to be apprehensive when you’re just starting to date someone. You don’t have to immediately open up and tell him or her your IBD history. But if you honestly see a future with this person and think it’s reciprocated, don’t be afraid. The more I opened up to my fiancé about the things I had been and was going through, the more it felt like a weight was lifted from my shoulders. The more I opened up, the closer we became. He slowly became my best friend, someone I could tell everything to, no matter how ugly it seemed. And you know what? He still thinks I’m beautiful. You have to tell your person things. Tell them you need to be left alone when you disappear to the bathroom, even if you are gone for 30 minutes;
that sometimes you need to lie down on the bathroom floor and breathe. Tell them you need to sleep with a heating pad some nights. Tell them there are going to be some days, maybe even weeks, where you don’t even want to be touched. Tell them that you need to be aware of where the bathrooms are everywhere the two of you go, because the moment that dreaded cramping hits, you freeze up and can’t even think. Tell them to not even THINK about taking you on a picnic to the middle of nowhere. It took my fiancé a little while to realize that food + no bathroom = a huge NO, but his realization took a lot of stress off of me. If you’re evolving into a serious relationship, you have to be honest. Your significant other is not going to care, because he or she is with you for a reason. They’re with you because they find you attractive. They care about you and want you happy. If they don’t? You’ll find out quickly that you’re with the wrong person. Good riddance. If you’re suffering with IBD, you deserve the world from someone. Dating is hard enough as it is without IBD thrown into it, but finding a best friend to go through life with makes all the difference in the world. Some of you have this person. Some of you don’t. For those of you who don’t, this person is out there. Don’t be afraid to open up and be accepted by someone. You are not your disease, but someone who has been given the strength to go through this life with it. But don’t ever, for a single second, think that you’re sentenced to do it alone.
OSTOMY OUTDOORS @OSTOMYOUTDOORS WWW.OSTOMYOUTDOORS.COM
Chronicles of an adventurous woman living life on the edge with a permanent ostomy.
I first had UC-like symptoms in 1999, but despite getting scoped numerous times, doctors couldn’t figure out what was wrong. I was initially diagnosed with irritable bowel syndrome. When I began to have blood in my stools, I was told I had hemorrhoids. Thinking it was nothing serious, I bled for the next five years until worsening symptoms in 2006 led me to a new doctor and finally a UC diagnosis. However, through all those years, my symptoms had mostly been well controlled. There were times when I had a lot of pain, bleeding and urgency, but my UC hadn’t impacted my life that much. I was still able to work as a park naturalist and take part in all the outdoors sports that my husband and I loved—though sometimes I had to make some mad dashes to the restroom and there were a few occasions that I didn’t make it. In the autumn of 2010, two years after the conversation with my friend, I was on the tail end of a backpacking trip when a mild UC flare escalated to a level of intensity that I had never experienced before. Each bowel movement I took in the backcountry was followed by hours of intense pain and waves of nausea. Every time we made a rest stop to use the restroom, I was shocked at the amount of blood I saw in the toilet. I began to have as many as 28 bowel movements a day and was admitted to the hospital when an emergency colonoscopy revealed severe inflammation. The doctors tried to get my illness under control with high doses of IV steroids, but the
medication did nothing. It was time to make a very hard decision. I was extremely ill and was terrified at the rate at which I was withering away. Looking in the mirror at my skeleton-like body, I couldn’t believe I was the same person who, just a couple of weeks earlier, had been happily hiking in the mountains with a 40 lb. pack. The doctor outlined some of the statistics on Remicade and then sent in a general surgeon to tell me about the surgical options. I learned about the different types of surgeries: permanent ileostomy or temporary ostomy with the option for a j-pouch and what I could expect with each one. If I decided to try Remicade, I could start it right away. If I showed no signs of improvement, I would have no choice but to be scheduled for emergency surgery the following week. If the Remicade did work, I could continue to take it for as long as it controlled my symptoms—maybe my whole life. I didn’t know what to do. I didn’t like the idea of having my immune system suppressed by a strong biologic medicine for the rest of my life, and I knew that this could be avoided by choosing the surgical treatment for my ulcerative colitis. But which surgery type was right for me? Surprisingly, I was leaning towards wanting a permanent ileostomy without first trying a j-pouch because it felt like a better match for my lifestyle. I knew either option would involve going to the bathroom more often than a person with a healthy colon would. At work, I was often out on the trails leading hikes or up on stage delivering nature programs for multiple hours away from restrooms. Going to the bathroom the traditional way on a rock face was very difficult and I wasn’t sure I would be able to “hold it” for hours on end with a j-pouch. As long as I could do the things I loved with those I loved, I would be happy. Even though my inner voice was telling me that this is what I wanted to do to restore my health, some of the doctors making the rounds at the hospital seemed surprised that, at age 38, I would want a permanent ostomy. This filled me with doubt and I was terrified that I might be making the wrong decision. It was then that I did something that was very uncharacteristic of my independent and introverted personality: I reached out for help. Late that night, I sent an awkward, very personal email titled A plea from Heidi in the hospital to a friend that I had once had the chance ostomy-related conversation with. She told us tales of rafting and climbing with her ostomy and answered our endless questions. I remember she was dressed beautifully, and try as I could, I could not see any ostomy pouch through her clothing.
The visit was just what I needed to restore my confidence and eventually pursue permanent ileostomy surgery. Soon, instead of being fearful of surgery, I found myself excited about it and the renewed health it would bring. Fortunately, my initial infusion of Remicade worked and I was soon well enough to go home. Unfortunately, that same drug gave me excruciating joint pain and my future infusions were cancelled. I crossed my fingers that the one infusion would be enough to keep me out of a flare-up. Because I was healthier, I would also be able to have my rectum and anus removed with my initial operationâ€” something I was hoping for in order to minimize the number of surgeries I would have to go through. The month between leaving the hospital and my surgery date was one of the scariest of my life. Words canâ€™t describe the peace I felt when the day of my surgery finally arrived. My operation went smoothly and when I woke up I was quite fascinated by my new stoma. Though the post-operative pain was significant, I knew right away that the pain I had felt in my colon for the past ten years was gone. In the months that followed, I had some serious incision healing complications, and despite being excited about my surgery, I went through periods of anxiety and depression. The results of my surgery were all I could have ever dreamed for. Within five months, I was able to start snowboarding again. With that first adventure came a new idea: I wanted to create a blog called OstomyOutdoors.com to help show others what was possible after ostomy surgery. The site would chronicle my return to outdoor sports and share the successes and challenges I experienced through writings and videos. At first I thought only a few people might look at the blog. After all, how many outdoorloving ostomates could there really be out there? I was shocked when the number of views rose at a rapid rate. I discovered that there were indeed a lot of people out there who wanted to enjoy the outdoors after ostomy surgery. I also realized that, regardless of interest in the adventure sports, people could relate to the underlying messages on my site such as going for your dreams, facing challenges and fears and living in the moment. OstomyOutdoors.com is almost three years old and every day I get heartfelt email messages from people who are facing or recovering from surgery. Each note stirs up memories of those days not so distant when I was stuck in the hospital terrified of what was ahead. When I reached out to others for help during those trying times, every single person gave me the incredible gift of hope by sharing their experiences. What a blessing it is to be on the other side of surgery and have the opportunity to pass that gift on to others.
THE IBD DATING FILTER By Megan Starshak of THE GREAT BOWEL MOVEMENT
Megan tells us about “The IBD Dating Filter”, something we all use to find the person who will be there for us until the end with our never ending battles with Crohn’s or ulcerative colitis.
To say that the experience of living with IBD changes you is an understatement. Whether it’s for the better or worse, our lives are changed, our priorities rearranged, and our perspectives on life opened up. It affects our physical well-being, our mental health, and even our relationships with others. For many of us, especially those who were diagnosed young, we notice a stark difference in what’s important, when compared to our peers. Typical ten-year-olds care about sleepovers and little league and summer vacation; ten-year-olds with IBD rely on their parents to manage their medication regimen and their doctor’s appointments. While many sixteen-year-olds are begging for a car, those with IBD are relying on medicine that costs as much as that same car that their carefree peers so desire. For me, being diagnosed shortly before I began my college career, the differences between what I dealt with, and what those around me dealt with, this was starkly apparent. Especially when it came to dating. For the typical American college student, parties, not hospital rooms, were standard weekend activities, and drinking feats became badges of pride. For me, road trips were nearly impossible, crowded parties and bars were risky, and frankly, much of the time I was just too tired for any of it. My priorities had changed to getting through each day, succeeding at academics when I could hardly get to class, and through it all, finding meaning in my disease.
The guys I met were typical college guys – fun-loving, late-night-partying students, doing their best to balance academics and social life, wanting to savor these 4 (or 5 or 6) years of being carefree before it was time to deal with real world responsibilities. You know, things like dealing with health insurance and the long term effects of medication. After a while of learning to deal with my IBD and trying to maintain a dating life, I found that most of the guys I met fell into just a few categories – there were those who didn’t care about IBD, never would, and made it clear. There were those who pretended to be interested, maybe because they thought it would pass and we could move onto more, ahem, romantic endeavors, or maybe because they just didn’t know how to react, there were those who told me it was gross and they didn’t want to hear about it and that girls don’t poop, and possibly the worst, guys that just poured on the pity. I found that I got better and better at picking out which of these categories guys fell into, and learned to not waste my time on someone who would never fully understand and be able to handle this impactful disease (and the one who didn’t fall into any of these categories? Yep, scared him off with a nice bout of Prednisone-induced-crazy). During my senior year, and around the time where I really began to come to terms with my disease and took ownership of my experience, and I had also begun fundraising for IBD, I was introduced a friend of a friend. We seemed like we hit it off pretty well. We got along and had many things in common, and I was happy to have someone fun to hang out with on the days I felt healthy enough. I approached the topic of IBD lightly, after all, if it was in a tolerable state, why bother? I gave him my fundraising letter to casually introduce the topic. At time time, no IBD discussion was had. A week or two later, he handed me a card with $5 inside, for my fundraising cause, he told me. “Although I don’t really understand. I don’t get what this is for. I don’t get what this whole thing is.” And there it was. The IBD Dating Filter had gone off, and I immediately understood that if he didn’t have the potential, or desire, to at least understand the basics of this disease that would forever impact my life, I didn’t have time to waste.
THE IBD DATING FILTER Whether you have a name for it or not, the IBD Dating Filter is what we all probably use to pick through our potential romantic interests, and their ability to be our partner when we have no choice to deal with Crohn’s or Colitis. It’s that little thing that alerts us when we notice certain traits, either apparent (Girls don’t poop!) or more subtle, like avoiding certain conversation topics. It’s what we all begin to develop after the first few times we realize we’ve wasted our efforts and hearts on someone who would never “get it.” It can be incredibly frustrating, dealing with the IBD Dating Filter, which can often render the majority of potential suitors as bad matches. We can find attractive, funny, adventurous boyfriends and girlfriends, people that come from good families and are good with kids, or those that have similar passions, such as traveling or watching bad 80’s movies. If they’re not patient, empathetic, and willing to listen, as heartbreaking as it can be, they just might not be the best for us.
It can filter out so many potentials that sometimes we wonder if we’ll ever find someone. Just like everything else with these diseases, the loneliness and frustration can be overwhelming, and we cry to ourselves how completely unfair it all is. All these seemingly great guys, just missing one key trait – being able to deal with this disease along with us. We cry over ourselves – why us, why are all of our great qualities overshadowed by this one stupid disease, one that we did not choose?! As I got older and graduated college, I saw some of those picture-perfect college relationships start to crumble. Friends that ended up in relationships because of more shallow reasons – focusing on physical attraction at the sacrifice of most everything else, or choosing a guy because of his fraternity, or even being so desperate to leave college with a ring that they stuck with a “resume boyfriend” (you know the type- looks great on paper, great career, looks up to his parents, loves puppies and long walks on the beach) but can’t actually handle real life. I started to see that the things the IBD Dating Filter let in or out actually made a lot of sense, and more and more as I grew (and continue to grow) older. Finding a partner that’s ready for sacrifice and unconditional support. Having someone that’s a good listener. Someone willing to drive you to doctor’s appointments, someone willing to cook meals that are gut-friendly. Someone who can laugh at poop jokes, and let us cry, even when they may not understand. Someone willing to fully take on a disease with us, even though they don’t have to, and stick with it, even when it really sucks, even when we depend on them without having the energy to return the love. Partners like this aren’t as easy to find, as evidenced by the IBD Dating Filter. But these are things that I would think many people look for. These are all things that, whether in the face of IBD, or just life, make for a great long-term relationship, and because of our journeys with IBD, we might have the opportunity to learn these lessons early on, ultimately setting ourselves up for a supportive, strong, and fulfilling long term relationship or marriage.
OSTOMY APPAREL WITH ATTITUDE
Proving that life with an ostomy is sexier than most would think...
“Hello, my name is Jessica and I own an ostomy underwear business!” This is something I never thought I would ever say. As a non-IBDer, I feel odd saying it even today. As a young girl, I’d always thought about more realistic goals like being the first female president or curing cancer. Never did I think that I would own a clothing company and I certainly didn’t know anything about what a colostomy was a few years ago. Life is funny and amazing that way I guess. But maybe I’m getting ahead of myself, let’s start at the beginning… Three years ago, I fell in love with a boy named Jason. I remember when he told me that he had Crohn’s Disease. At the time I really had no idea what that meant so, later after he left, I looked it up online. It all seemed very ambiguous to me and I was very confused because I never noticed him avoiding corn or nuts. He didn’t seem to have any food restrictions at all and it was honestly something I thought that I would never notice. It wasn’t until December of 2011 that I began to see its effects. Whenever Jason would get really stressed with work and deadlines, he would get odd fevers with no symptoms and just want to sleep. I know now that this was the infection in his colon and the work of Crohn’s that would eventually lead us to living in the hospital for over a month during his recovery process from his emergency colostomy surgery. When Jason got out of surgery, we weren’t sure how to tell him that they had to open him up, that he would have a large scar down the middle of his torso or how he now had a colostomy bag. He was only 34. When he woke up I just told him calmly what had happened but that it was a good thing because they were able to get all of the infection out and ultimately avoid having to do another surgery. Jason agreed and never got upset. He was very strong through the whole thing which made me stronger for him.
It was a difficult recovery process but he was amazing. I remember the first time we met with the ostomy nurse and it was time for Jason and I to look at his ostomy. Side note about me, (I have a very honest face. It’s not always the best trait because when I don’t like something or someone you can tell because it is written all over my face.) However, when I looked at Jason’s ostomy I didn’t have a problem with it. I just remember feeling acceptance because this is the man I love and this is part of him now. I remember my initial thought was it looked like a shotgun wound from the movies. I actually enjoyed learning how to care for his ostomy and doing research. I felt like the more I knew the better we would be. I began to learn how to work the machines in his room much to the nurses dislike and tell his visitors about what was going on with him while he was sleeping or very drugged up. When we got home, we had to face the next challenge: being home and dealing with an ostomy in “real life”. I had to go through the inevitable awkwardness of not knowing how to hold him or be intimate with him. Not wanting to hurt him but wanting him to know that I was still attracted to him. He was worried about clothes and self-conscience at first about being able to see it through his shirts. This is what lead us to starting Awestomy. In the hospital and once we got home, we did a lot of research online for ostomy clothing and support groups. When it came to the underwear options, we weren’t thrilled with the options. It all seemed so medical looking, not fun, not funny and not sexy. We just weren’t having any of that. We also started reaching out to other ostomates through Facebook and found an amazing network of young and strong ostomates. So on July 4th 2012, myself, the Graphic Designer and Jason, the Web Designer started Awestomy at our kitchen table. We knew we wanted it to be a fun brand where we could encourage ridiculousness and fabulousness with an ostomy. However, neither of us had ever sewn or knew anything about where to start. So we started with what we knew, branding and a website. In our first month we produced funny t-shirts and, as the fates would have it, we found that most amazing lingerie designer close to home that totally got what we were trying to do. With the help of social media and some very amazing ostomates and non-ostomates we have met along the way, I can now say that I am the owner of successful ostomy apparel company. In addition to making ostomates super sexy and awesome, we also wanted to give back a portion of our sales to IBD non-profits. We are happy to report that we have been able to donate over $3,000 to IBD charities and have again, met some amazing people along the way. It has not been easy but it has been the most rewarding thing I have ever done. I have never been so excited about a job in my entire life. It’s funny because you never know where your life will lead you. It seems you search your whole life for your calling and sometimes you just need to let it come to you.
GROWING UP WITH UC By Dustin Harris
The fiancé of a girl with ulcerative colitis tells us how being there for her through her long battle with the disease led him to not only grow up, but redefine what a relationship is and should be about. About a month ago, the gorgeous and talented editor and graphic designer of this magazine asked me if I wanted to write an article about my experience dating someone with ulcerative colitis. I immediately said yes. But I had failed to realize at that moment just how daunting of a task it would be --- probably because of how great things are now. Anytime our history comes up, we kind of joke about meeting 10 years ago in middle school and I make a stab about how “she said she didn’t want a relationship”. I actually joke about the problems we had in the beginning because of how damn good things are now. It wasn’t until I started writing this that I remembered just how far we’ve come, and it makes me so extremely proud of my fiancée. Kristin and I have very different accounts of how long we’ve known each other. She maintains that we started hanging out as she was graduating college (about 3 years ago) and that we had a few indirect social interactions in high school. My version takes us back to middle school where I first decided that I had a crush on her, then into high school where I would leave her love notes in her locker, and eventually through college where I finally won her over. Either way, it’s safe to say that the last few years have been more serious than the previous 10. When we first met again, before I knew any of the damn shorthand (GI, UC, IBD, flare, biologics, etc.) or had a clue what it meant to have an autoimmune disease, Kristin casually told me that she felt like what had made her sick in the past was starting to come back. At that point, I knew that she had been really sick for a while in high school/college --- but I had never asked her about it or been around to notice any of the hell she was actually enduring. It’s so apparent to me now
how scared that girl must have been when she told me that. But she was so calm about it; it was as if it were just some annoyance that she’d have to deal with again for a bit. In retrospect, that was the first glimpse I got of how strong Kristin is. I say all of that for two reasons: 1) So that Kristin knows that I now call bullshit on her being all calm about her UC flare coming back, and 2) To show you where the starting point was of getting her to open up to me about IBD. Shortly after she told me she was getting sick again, we got into the habit of talking everyday and I got into the habit of bothering the hell out of her about seeing me everyday. By now she had started to let me know that her starting to feel “sick” again was a little more serious than I was giving her credit for. But she wouldn’t tell me what she had. Of course I had been googling everything by then, but I couldn’t say “UC” without being reminded that we don’t say “UC”. So it was like that for a while. Let me take this opportunity to tell you that Kristin didn’t want a relationship with anybody --- she had a ton going on with UC and had been with someone during her first bout with it, so she knew what kind of impact it has on relationships. That’s sound reasoning, sure. But that isn’t something that anyone with a huge crush on someone wants to hear. I hated it at the time...a lot. Probably too much -- but I now look back at it and want to thank her because it was that hurdle that made me so much more determined to date the hell out of her. It was good for us; a catalyst, really. Because that’s when I realized that there was a lot more to us than some potential boyfriend/girlfriend nonsense. I couldn’t quit her. She said she didn’t want a relationship, and at some point (after me acting like a stupid guy) I realized I didn’t care about titles or classifying us. That girl had become the best friend of my life and it wasn’t about anything but spending time with her and growing closer. There’s something really organic about our transition to what we are now. Instead of immediately branding ourselves as a couple and trying to make all of the aspects of a relationship work right damn in the middle of her falling out of remission, we kind of just...let it figure itself out and eventually found ourselves stupid amounts of in love. From day one, we have both always said we wanted to marry our best friends -- which is exactly how it’s worked out. It was that first impasse that set the tone for how this was going to work out. I had to decide that I wanted to be with her. You think people make that obvious choice with their person all the time, but UC takes all of the flimsy decisions of a regular relationship out of the equation. This was a for real, grown up, and commited type of decision. You have to get over yourself and prioritize your life according to what you want and who you love. I wanted to marry this girl, which meant accepting that I’d have to work my way up to her opening up to me about things like remicade, steroids, side effects, bleeding and why sleeping over wasn’t as easy as just packing a bag. It meant having to understand that having IBD isn’t conducive to a ton of physical affection and that there’s no such things as making plans.
There’s no need to list every single obstacle that UC has presented to my current relationship. They all really just come down to whether or not there’s enough communication and will to work through them. I swear being a part of Kristin’s life throughout this time has made me grow up so much. It redefined what a relationship was and grounded me to the point that I know exactly what I want in life. Honestly, I thought that UC would be what tore us apart. I laugh at that now because it has had the complete opposite effect. Once I figured out how to not be such a selfish jerk, UC became something that would bring us so much closer. It has made me so completely and irrevocably sure that she is the one person that I want to spend the rest of my life with.
FASHOSTOMY By Gaylyn H.
DRESSING FOR A DATE
This young lady proves that life with an ostomy doesn’t have to be fashion free! She tells her story and share some of her favorite outfits to wear that make everyone ask ostoWHERE? She is an expert at keeping herself glamorous, while being “gutless” at the same time, even proving that wearing fashionable bathing suits doesn’t have to be off limits. She is always willing to answer any of your questions and has an amazing direct contact form right on her website, so after you’re done reading here, be sure to check it out! You have a date? Now what? What does one wear on a date? What does one wear on a date with an ostomy? As if dating with IBD isn’t difficult enough. Trying to find an outfit can be just as tricky. You want to look like you put at least a little effort into your look, right? My personal philosophy is that you can never be overdressed. However, be mindful of what the evening will hold. It is essential to dress for the occasion. If you are living with an ostomy you know that when you eat, your bag will fill. So it can be a challenge to decide what to wear. Here are a few tips to help you decide on a wardrobe
The Easy 5 Step Style Guide for an Ostomy:
1: Be comfortable 2: Be smart (wear clothing that can give you a little leeway and that allows breathability) 3. Be chic 4: Be you! 5: Always, Always...Be Glamorous! Here are a few looks I love. Don’t be afraid to step out of your comfort zone and take fashion risk! Also, I know it can be difficult with an ostomy but do not be afraid to wear form fitting attire.
Black and white is my go to signature look. Black and white is a high contrast duo that is forever stylish anyway you match it up. I love this look because you can play with different styles such as menswear inspired looks. Make a statement in a crop top and a wide-leg pant, this is much lighter and more fun. It provides versatility and is still one of the hottest trends of the season. Turn heads in a signature mix of neutrals and a pop of color. The pop of color can be the lip, the bag, or the shoe. Add a fierce red lip to any neutral outfit and make it pop that much more. A high waist, pleated pant are ideal for an evening out for dinner. They give a little leeway for a slight pudge. A sleek and polished vibe always works. Having an ostomy does not need to impend on your fashion choices. Yes you may have to alter or make adjustments. But do not be discouraged in thinking you will never be able to wear your favorite clothing pieces again. Overall, have fun! Donâ€™t be too on edge. Try to let your guard down and be honest. Donâ€™t sensor yourself or your needs because of what you think their reaction is going to be. Do not be ashamed to voice your concern. You will be better off.
Gaylyn tells us how dating with an ostomy can be tough, but that doesn’t mean you should let the stigmas stop you from finding the person of your dreams. I receive countless emails and messages asking me all types of questions about Crohns since my blog and I love it, so keep it coming! One topic area that always comes up is dating! “Do you think I will find love again?” “How do you deal with dating?” “I am afraid he won’t like me if he finds out”. My response is to just be yourself and if he doesn’t accept you for who you are, to the left, to the left! I know easier said than done, trust me I know. Dating is tricky and then with me you have another HUGE factor that makes it even trickier, so I tend to stay away from it. I wouldn’t say I hide the fact that I have Crohns, I just don’t announce it immediately unless they ask. Crohns and/or ulcerative colitis is not a glamorous disease. It is uncomfortable talking about bowel habits with your doctor, so just imagine how uncomfortable it is talking to someone you don’t know and/or are getting to know about your colon or lack thereof. Despite my blog, I am probably not as open as you think when it comes to these things. So much so, I told one guy to read my blog and if he had any questions he can ask. I went out on a few dates with this guy. He seemed pretty cool. The last time we hung out he almost grazed my ostomy with his hand/arm. I said almost because I saw it coming and did this crazy kung fu dodge move to avoid this awkward encounter. In my attempt to avoid an awkward situation I in turn created a much more awkward situation. After my spastic moves we said our goodbyes. Unfortunately, there was no getting around what happened. I am not sure what came over me, but I texted him that I had an ostomy. I couldn’t believe that I text him that. Please keep in mind this is all within maybe 2 weeks of meeting this guy. I have NEVER done that. I generally never tell until it is absolutely necessary like I go missing for a few days because I am in the hospital. He asked if it was permanent. I said, “Yep.” He asked why I had one. So I told him. He said, “You cope very well, amazingly well.” Then I waited…nothing. Next day…nothing. The next day…nothing still. I didn’t hear from that joker again for about a month (sorry if you thought that was going to be a happy ending). I tell that particular story because it taught me a few things. I did not know this guy, he did not know me. We had only just met. I told him I had an ostomy. He didn’t respond how I wanted him to and yes it hurt my feelings but it was hardly the end of the world. And yes, I may actually use that ‘matter of fact’ approach again. I stepped out of my comfort zone and put it all out there and it was thrown back in my face or so I thought. About a month later he text me out the blue, “I just want you to know you are one of the strongest women I know and I admire your strength more than you know.”
I have learned that not everybody is meant to understand and or even care about what you have going on. Try not to take it personal. Everybody is not built for it. It takes a special person to be and stay with someone dealing with a chronic illness. I say that because it takes a special person to live with a chronic illness. I am so worried about the fact that somebody can’t handle my ostomy or the fact that I have Crohn’s. But maybe that’s not it at all. Maybe, just maybe somebody recognizes the fact that you possess super human powers of strength, courage, perseverance, resiliency and determination. And perhaps some people can’t handle that either.
GLAMOUR GUIDE By Emma C. MYBEAUTIFULMESSYLIFE.WORDPRESS.COM @EMMA_CHAPPLE & @xMBML
Emma C., author of My Beautiful Messy Life, tells us how to look confident in love with IBD, even if you don’t feel it. Dating is a nerve-wracking concept in itself. Throw in some IBD and an ileostomy, and the nerves are accelerated. When a first date is hard enough, how does a sick girl deal? Now, I’ll admit that I’m far from being a dating expert. I can count the number of dates I’ve been on with one hand. I like to blame being sick through most of high school, also known as the age where you (usually) start a relationship. The small number of dates I have experienced went absolutely nowhere. But, I did have an ostomy for all of them…go me! A huge concern I had on my first-ever date was: what do I wear? Granted, this is something every girl asks before going out. But when you’ve got an ostomy, the stakes are a little higher. Generally, I can wear almost anything as long as I take a little extra care. But, if you’re really self-conscious (and who wouldn’t be on a first date?), there’s a solution! Though the style of outfit depends on where you’re going, it’s a good idea to stay away from tight-fitting clothes. Though an ostomy can usually be concealed with a good pair of spandex shorts, there are times when you don’t want to take any chances! If you’re having a casual affair, like a coffee date or going to the movies, a long, loosefitting tee with leggings or skinny jeans is a good choice. If you’re getting fancy, choose a dress or skirt with an empire waist. The extra fabric will hide anything! So, we’ve covered what to wear, but what about the date itself? I know from experience that it can be hard to stay poised and interested when you’re mind is fixated on the bathroom.
Which brings me to my first point: know where the bathroom is. Well duh, you’re probably thinking, but I’m being totally serious. I know firsthand, when you’re on a first date, your thoughts are all over the place – make the bathroom a priority! If at all possible, go out in public. Unless you’re really comfortable with the guy, you’re going to need an escape plan in case of a leak, a blockage, or any other ostomy-related problem you can think of. The first date I ever went on, I was invited to the guy’s house. Besides being one of the most awkward experiences ever, it was also just uncomfortable. I was in an unfamiliar place, with no way out if something went wrong. All this advice makes a date sound pretty intimidating! Even though I haven’t been so lucky, I’m definitely not the poster-girl for dating with IBD! The best advice I can give you for staying glamorous on a first date is to be confident! You’re so much more than your disease or your ostomy, and that’s what you need to show off. Keep this in mind, and you might even get that second date (let me know if you do!).
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THE SOAP BOX Go ahead, step up. We won’t make you get down.
Sometimes complaining to your healthy family and friends just doesn’t cut it. Here at Companion, you can find a shoulder to lean on and a pat on the back. So go ahead..let it all out.
NEGATIVES: No sleeping on my front, unpredictable noises, smell when emptying and no popcorn! - @UCGIRL_2008 When my ostomy leaks and I look down and think, “What the hell is that from?” Because I forgot that I had one for a second. - @TIGGYLIZ Not being able to eat certain things because if I do I’ll pay for it. - @AARONMICHAELD Pain - @SUE_SALLEN2376 The effects on every single organ of my body. When one heals, another fails. Hard to find energy to function at times. - @GIRLSGOTGUTS The chore of changing my ostomy after a shower! - @SHERRILLHAWKER The weight gain. Unlike most with IBD, I’ve gained 60 pounds in 2 years. - @KLA_YEAHYOUKNOW Awkwardly avoiding all appetizers while your date chows down. - @ROBWRITESCODE
Being able to order anything other than grilled chicken salads or sandwiches, because everything else causes too much pain! - @AUYF93 Not being such a nervous wreck! What if my ostomy farts? What if it leaks? Girls aren’t supposed to poop! - @XMBML
POSITIVES: My appreciation for the little things in life. Like a full night’s sleep. - @SEMISWEETSTORY Realizing that my limits are unknown to me. I can always endure more than I think that I can. - @KATELYNDRAKE15 Realizing who cares about you the most, as well as learning your true strength. - @CROHNS_SUPPORT A positive outlook on life! Loving life, going after what I want to help others, etc. - @COLLEGE_CROHNS Cycling from London to Paris and climbing the 3 peaks within 24 hours because of IBD. - @FOREVERYIBD Appreciate little things more, awesome #ibdfam. Wait around less, more responsible, stronger. Better attitude, less fear. - @ROBWRITESCODE I have much more empathy for my patients now. - @NURSEYLAURA All of the wonderful people that I’ve met! - @AHER96
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COLOR THE DIGESTIVE TRACT Color it. Make your insides as perfect or as messy as you want. Put an X over the parts of intestine you don’t have. Hang it on the refrigerator. You’ll make us so proud.
The Love Issue