Companion Magazine for IBD Volume 1

INAUGURAL ISSUE STORIES FEATURE that inspire, teach FOUNDATION how being involved helps & motivate fashion, finding a sports family TREATMENT PLAN & TIPS ON HOW YOU’LL SURVIVE THAT WORKS FOR YOU I was diagnosed; NOW WHAT? a guide to starting life with IBD DECEMBER 2013 V1, ISSUE 1

DECEMBER 2013 INAUGURAL ISSUE FEATURES + COVER STORIES: 5 stories that inspire, 25 exercise: 29 i was diagnosed; now what? teach & motivate is it still possible with IBD? 2 LETTER FROM THE 29 I WAS DIAGNOSED; 49 DIET & RECIPES ft. SWEETLY SIMPLE NOW WHAT? EDITOR 4 IBD’ERS GREATEST 33 FINDING A TREATMENT 52 IBD’ERS BEING PLAN THAT WORKS ACCOMPLISHMENTS INVOLVED 5 STORIES THAT INSPIRE, 35 HOLISTIC SPOTLIGHT: 56 FEATURE FOUNDATION: TEACH & MOTIVATE THE CROHN’S JOURNEY SEAFARMACY FOUNDATION 17 25 THINGS TO DO 38 OVERCOMING OSTOMY 61 FASHOSTOMY CHALLENGES WHILE STUCK IN THE BATHROOM 19 PATIENTS TURNED 41 CREATIVIBD 64 GLAMOUR GUIDE a new direction through ADVOCATES talent & creativity EXERCISE & IBD FAMILY & LOVED ONES 25 you don’t have to give up. 45 inspiration stories that your loved ones can trust.

LETTER FROM THE EDITOR welcome to your new Companion! I came up with the idea of Companion while I was driving back to my frst day of work after my frst surgery of the IPAA STAFF series that I am currently in the middle of. I knew how much BROOKE BOGDAN it helped me to read other’s EDITOR - IN - CHIEF stories and be inspired by KRISTIN WILLIAMS their bravery and their hope for a better life, despite the GRAPHIC DESIGNER suffering and exhaustion that EDITOR infammatory bowel disease CONTRIBUTOR brings. I wondered, “What if there was a way I could create a magazine, something fun for IBD patients to turn to when CONTRIBUTORS they feel lonely or confused?” DANIEL BALYINT That’s when I thought, “I can.” KRISTY C. TOM H. I suffered immensely with ulcerative colitis for 2 years HELEN R. until fnally having an urgent total colectomy in July of 2013. KATE M. My attitude about my ulcerative colitis and now ostomy has BRIAR L. always had a connotation of loneliness. Feeling like no one BROOKE A. understood what I was going through. I had no one to talk RASHEED C. to that could understand the pain or how scary these EMMA C. diseases actually can be. In my journey to create my magazine, I met our graphic designer, Kristin, who has SARAH CHOUEIRY changed my life forever. JODIE WALMAN ANGELA DIMOS Kristin has taught me that I am not alone. That I have a GAYLYN friend I can turn to that understands every part of what I KRISTYN T. am going through. Not only does she make this magazine beautiful, she makes me a more beautiful person by SYBILLE G. reminding me every day that we are blessed to have our SEAFARMACY lives, with or without ostomies. JOHNNIE C. 2

I have also met countless others, from all over the world, who have contributed to our frst issue. Our mega inaugural issue. Never would I have thought that I would have such a huge, positive response to what I dreamed of doing. I cannot say enough how thankful and truly inspired I am by reading all of your stories and what you have completed through your illnesses. Everyone who I have spoken with on social media or through your writing is a true warrior and that is what this magazine is all about, coming together to create a publication that patients, family members, friends, doctors or anyone that doesn’t know that much about IBD can turn to for support, guidance and fun! My hope is that everyone can always learn something new, fnd a friend to turn to in their darkest time, or learn how IBD truly affects the lives and spirits of those who live their daily life with Crohn’s or ulcerative colitis. For this issue, I included everyone that had a story to tell. This issue will be our largest and most telling. For future issues, we will have to cut the size, but never the inspiration. I hope that you enjoy our frst issue of Companion Magazine for IBD. My hope is to one day be published and placed in doctors’ offces, subscriptions, hospital waiting rooms, health stores, everywhere. In this magazine, there is no “I can’t.” We are a publication based solely on the idea of “I can.” I have to thank my family, friends and loved ones for all of the support that they have shown me through this venture. Without them, Companion wouldn’t be possible. For more information on how you can be a part of Companion Magazine, please: Check out our website at companionibd.wordpress.com. Follow us on twitter/instagram @companionibd Like us on facebook at facebook.com/companionibd Comments, questions or stories can be sent directly to companionibd.gmail.com If you would like to read more about my story with ulcerative colitis, you can visit my blog at frecelyfared.wordpress.com. Thank you and enjoy! Brooke A. Bogdan Founder/Editor-In-Chief CONNECT WITH US! [email protected] @companionibd facebook.com/companionibd 3

IBD’ERS GREATEST ACCOMPLISHMENTS “what has been your greatest accomplishment since being diagnosed?” “Being a stay at home dad, even coaching, took my daughter’s team to the National fnals for softball and won! It was a battle!” - JOSEPH M. “Completing uni, took 7 yrs of tears, tantrums and quite a few triumphs along the way.” - HELEN R. “Becoming a certifed ftness instructor while battling UC, and making the recovery from having my colon removed.” - KRISTIN W. @SEMISWEETCOLON “Mine has to be carrying on and refusing to give up during uni and still managing to get a better grade than What’s your greatest others.” - CROHN’S SUPPORT accomplishment since being diagnosed with “Just staying in school, If I dropped out of school when my dr said I shouldn’t go back to school I’d still be in Crohn’s or ulcerative sixth grade.” - @NOTSONORMALLIFE colitis? Share with us to help inspire others. “Mine is, although it was needed, having my very frst operation.” - KATE M. @companionibd “Facing my Crohns Disease head on by being more adventurous BECAUSE I have IBD thus finding my silver lining...simple really!” - @FOREVERYIBD “My greatest achievement will be when everyone I know knows about my UC--I keep it quiet as I’m still embarrassed by it.” - ANONYMOUS “Overcoming my fear of Crohns and learning to accept it into my life and coming to terms with the reality it brings.” - @RAYCH62 4

STORIES THAT INSPIRE, TEACH & MOTIVATE IBD’ers share their stories of bravery & hope in order to inspire others. KRISTY C. @BELSIZEBIRD I was diagnosed with ulcerative colitis (UC) in 2003 while going through my fnals at university. The symptoms weren’t particularly bad: I had bleeding and urgency but not too much pain and, compared to other people, didn’t need the toilet too often (probably about eight to ten times a day). I was given Predfoam which cleared it up pretty quickly. Apart from a brief fare-up a couple of months later (when I was separately diagnosed with cancer (Hodgkin’s lymphoma; I have fortunately been in remission for about 9 years now), I lived symptom free...for nine years. This clearly led me into a false sense of security. I had UC but was like so many other people out there who had no idea how debilitating and serious the disease can be. I have a friend who has irritable bowel syndrome and when she made comparisons I didn’t think to be annoyed. In March 2012, I started with another fare-up. It wasn’t particularly bad (rather like before)...to begin with. I got married, I went on the honeymoon (on a safari, where there are hardly any toilets and the prospect of crouching down behind a tree and being eaten by a lion wasn’t appealing). I therefore expected that all would be well after a short course of Predfoam. However, neither Predfoam nor Asacol suppositories worked. I was given oral Asacol, which also didn’t work. The bleeding and urgency got worse and the pain started to kick in. I was put on Prednisone, and every time I tried to reduce the dose (under doctor’s advice) things just got worse. I went for dinner with two friends at the end of November 2012 and spent most of the evening on the toilet. The following day, I was admitted to the hospital. I was mortifed as it was my birthday two days later and I was meant to be going on holiday to Mexico. I spent two weeks on IV steroids. They didn’t work. I was then given Cyclosporine for about a week. It didn’t work either. The toilet became my best friend, food my enemy. I lost about 20% of my body weight, dropping to 7 stone. In the end, my only option was surgery. On December 12, 2012, I had a sub-total colectomy. The frst night after surgery 5

was pretty painful because it had been decided that I wasn’t suitable for an epidural, so I had to survive purely on the morphine pump. Fortunately, the pain subsided pretty quickly. For the frst few days after my surgery, I was quite upset. It had all come as such a shock. As I said, I had never appreciated how severe UC could be. Many people say they feel so much better after they’ve had the surgery because they no longer have to live with the symptoms of UC. However, I’d been lucky enough not to have suffered severe UC symptoms (until the two weeks immediately before the surgery) so I hadn’t had time to think about life with a stoma. I spent a lot of time searching the internet reading about other people’s experiences. Unfortunately, a lot of people generally only write about negative experiences as they are reaching out for help, so this can give a rather distorted view. I didn’t fare too well on morphine, it made me rather depressed. But once I came off of it, my mood lifted and I could see the light at the end of the tunnel. Okay, a stoma and an ileostomy bag weren’t my frst choice. But at least I was alive! I went home about a week after surgery but was readmitted twice (once in the early hours of Boxing Day) with blockages. I have since learned that my bowels wake up only to fall asleep again a few days later while everything is settling down. I was meant to start a new job early in January but had to postpone this to the beginning of February. Fortunately, my new employer was incredibly understanding, and even sent fowers! I spent the next few weeks recovering and even managed to ft in a weekend trip to Paris and a week away in Crete. Thank goodness high waisted bikinis were in season – no one had a clue that I was hiding an ileostomy bag under there! Apart from the inconvenience of changing the bag and the slightly restricted diet (I used to live on salad), life was actually pretty good and each day got better. I had always intended on getting a J-pouch when I was frst told that I needed surgery, but life with a stoma wasn’t that bad and there are a number of consequences that J-pouches bring. At the appointments with my surgeon and nurse I would go armed with a huge list of questions. In the end, I decided that if I didn’t give a J-pouch a try I’d regret it. So, in June 2013, I had the surgery to construct the J-pouch, turn my end ileostomy into a loop ileostomy, and remove my rectum. I spent just over a week in the hospital after this operation. Unfortunately I had ileus and started vomiting bile and had to have an NG tube inserted. There’s no shying away from the fact that NG tubes are just unpleasant and I’d rather not have one again! Once I was released from the hospital, recovery was pretty quick and uneventful, apart from an overnight admission for another blockage. Three months later, I had a pouchogram which showed that I didn’t have any leaks and the pouch was ready to be connected. Yay! In September 2013, I had my takedown surgery. It was on a Friday evening. I went to the toilet for a number two for the frst time in nine months the following morning. It was amusing to be so excited about having gone to the toilet. In the next few days, I slowly reintroduced food and things were going well. I had control and didn’t suffer any accidents or leakage. The need to go to the toilet is a little unusual, it’s like a pressure in the lower pelvic/tailbone region. The frst few days 6

at home were pretty good as well. However, after about a week I started to suffer what I thought was serious butt burn. I had already stocked up on all of the recommended creams: Calmoseptine, Ilex, Sudocream and various others. However, none seemed to work. I felt like I was passing burning hot razor blades. I had not cried from pain since I was a child and there I was sobbing and on the verge of screaming. It turned out that I had a large anterior anal fssure. I was given two different creams, neither of which worked, so I was readmitted to the hospital as a day patient for Botox injections in my anus. I have occasionally wondered whether I’d get Botox to reduce the impending wrinkles. I had never anticipated having Botox in my bum! That was two weeks ago and things seem to be going well (touch wood). I’m probably going to the toilet about seven to eight times a day and once to twice overnight (although I have had a couple of nights without any toilet trips). I don’t have urgency or pain (although at the moment I do have some unusual uncomfortable feelings but I expect that they will eventually get better as time goes on). This week is my frst week back at work. Everything seems to be going in the right direction. And I’m hopeful! I have to say a huge thank you to my husband, parents, brother, his wife, and three of my husband’s friends (one is a doctor, one gave a lot of advice because he had been through exactly what I was going through, and the other had extensive knowledge of the hospital system). They were incredibly supportive. My mum sat at my bedside every day that I was in hospital and stayed with me for a large amount of the time that I was recovering out of hospital. My husband and dad spent a lot of time doing research and questioning the doctors to ensure that I was getting the best care. My husband also reassured me numerous times that he didn’t care that I had an ileostomy bag. I didn’t take any photos of my time in the hospital or my ileostomy bag, but in the spirit of sharing as much as possible, here are two photos: one to show that high-waisted ileostomy bag disguising bikini and the other to show the state of my stomach scars. to date (the dressing is covering my old stoma site which is still healing). I’m looking forward to showing off those scars in a non-high waisted bikini soon! KATE M. @KATEMIDD123 crohnsgirlblog.wordpress.com Hi, my name is Kate; I am 17 years old from Liverpool. I was diagnosed with Crohn’s Disease in November 2012. When I was frst diagnosed, I felt relieved to fnd out what the awful abdominal pains were that I had been experiencing for 9 months. It’s one of those things where you don’t know anything about the disease until you have it yourself or know someone who has it; you think it’s just like most things where just some medication will make you feel better in time. However, when your start to learn more about IBD, you realise it’s not as simple. 7

My diagnosis has changed my life so much. I started college and had to leave after three months because I had been off so much with not being able to get out of bed some days. The one thing I could eat however I felt was arrowroot biscuits. They are just like rich tea but lighter on your stomach. There are so many great support systems and I could probably talk forever about how amazing they all are, but the best four support systems I have found are one: my family who have been there every step of the way from when all my frst tests started to the abdominal pains to my operation. However upset or annoying I may have been, they have always been there and been great support the whole way. Two: my IBD nurses and dieticians at the Royal Liverpool hospital. They work so hard to try and get you better and are always thinking of you even if you have not phoned and talked to them for awhile. Number three would have to be Crohn’s and Colitis UK. They are amazing with all the information they send you when you frst sign up to be a member. They send you all things from medication and diet to newsletters about fundraising and latest medical ideas. Also, my local group Crohn’s and Colitis UK Mersey group are brilliant with their newsletters and gave me the opportunity to be in their organisation team, so I now get to be a part of raising awareness for this amazing charity. Lastly has to be my IBD family, or all my brilliant friends on twitter. They are always there to help you through good days and bad days and it’s someone else who you can talk to who knows exactly what you are going through. After I was diagnosed, I was put on steroids and antibiotics, and just 3 weeks after my diagnosis, I was taken into the hospital with a blockage and therefore put onto a liquid diet for three weeks. After the steroids and antibiotics fnished, I was put on azathioprine and infiximab. I was on these for 6 months and because they never worked, my last option was an operation. I had to get myself to an alright weight so the operation had a better chance of being successful. I was given a feeding tube. I had the feeding tube for 12 weeks, and I wasn’t allowed to eat while I had my tube. The medications I have been on are: steroids, antibiotics, calcium tablets, azathioprine and infiximab. The liquid supplements I have been on are: ensure, fortisip, modulen (to 8

drink) and NG tube (feeding tube). For the feeding tube I also had module. My operation was on the 25th of July 2013 and I am now on no medication or treatment. The quote I now have since my surgery is: “don’t look back, always look to the future”. Now I am well. You don’t want to be looking back on all the painful times and hospital stays, you just need to concentrate on doing as much as you can while you’re well. My best piece of advice to anyone newly diagnosed is this: it is normal to be worried when you’re frst diagnosed, but there are an awful lot of people going through what you’re going through at the moment. Get onto twitter and fnd them, or even just join your local group; just remember you are not alone. HELEN R. @CHRONICINSPIRE chronicinspirations.com I was diagnosed with uclerative colitis in 1994. There was no Internet, much less social media, back then. I was offered no information or support beyond medical care. These days it is much easier to fnd others online who are in the same boat. I badgered my Doctors for information about the disease & treatments, as they had minimal printed material available. I was diagnosed in 1994 when I was 21 and had my frst surgery in 1998 to remove my colon. Two more surgeries followed to create a JPouch. It is nearly 20 years since that initial diagnosis and many more surgeries to deal with problems from adhesions. My advice to those who are newly diagnosed is to educate yourself about the disease and the treatments. You will be expected to sign informed consent forms for any procedures, so you might as well be informed. This disease can really impact on all areas of your life, so professional psychological support is important too. The best source of information about the disease for me was doing a health science degree at university. That happened 9 years after my diagnosis, as I wanted to really understand what the big picture of my health situation was as well as begin a new career. In fnding a Doctor &/or health care team, look for people who are comfortable with 9

you asking LOTS of questions and who help you to understand the disease process along with the medications and health strategies that you can use to stay as well as possible in the face of a chronic illness. The ideal team for me is health professionals who encourage self advocacy and who will also advocate for me when I am too unwell to do so myself. I have seen the the good, the bad and the downright ugly of healthcare professionals and truly appreciate those who I can work with to manage my health care. IBD has made life a challenge with repeated periods of poor health. This impacts severely on education and steady employment. In saying that, I have been able to earn a Masters degree in a health science and that has helped me to learn how to advocate for myself and to be able to help others to learn how to do the same for themselves. When I started exploring IBD sites like C3life, I was overwhelmed by the similarities of people’s stories to my own. This disease is not just a few ulcers in the gut; it infltrates every part of your life. The diagnostic process is rarely straightforward or quick. The pain and suffering is intense and not without psychological effect. The battles with the health care world are frequent and it is a challenge to fnd doctors who trust in your knowledge of your own body. It stuffs up your education and professional development, and yet along the way it creates really strong people who make the very best out of what they have. TOM H. @FOREVERYIBD thechronicadventurer.wordpress.com My name is Thomas, and in December 2011, I was diagnosed with Crohn’s Disease. It took about a year to be diagnosed after the doctors thought it was just a virus that would go away or that it was IBS. However, by the time they realised it was Crohn’s, my health had deteriorated to the point that surgery was the only option. The surgery was in the form of a resection of my bowel to remove the most infamed part that had caused 10

a stricture. The news of having a chronic illness and having major surgery hit me pretty hard. Coming out of the hospital, I knew nothing about what Crohn’s disease was or what impact it would have on me in the future. To overcome this, I searched the web for answers which helped to some extent as it put me in touch with Crohn’s and Colitis UK. They have given me a great support system through meeting lots of people with IBD, some of whom have become great friends. But searching the web also left me very depressed with all the negativity I found surrounding the disease. So much so that I thought the adventurous life of traveling that I did before I became ill was over. This negative view got reinforced when 3 months after surgery, I was back in the hospital suffering from a fare up. After performing tests, they told me that I had active Crohn’s in more areas of my bowels than they originally thought. So they put me on steroids and azathioprine to reduce my symptoms. I wondered if this was the life for me now: yo-yoing in and out of the hospital and not being able to plan for anything, as who knows when my next fare up may strike. However, after giving myself time to allow my health to stabilise as I’d been taken off the steroids, I decided to make 2013 the year of adventure. What this meant, I didn’t know, as I was scared to even go on holiday again. But I knew I had to try and see what the ‘new’ me could do. So I signed up to cycle the 100 miles of the London Olympic Road Race Route for charity and booked a trip to Iceland. Not the easiest of options, but sometimes I like to jump in and then see if I can swim. The trip to Iceland was incredible, as I could do everything the rest of the group could do and my Crohn’s didn’t hinder me one bit. I was even lucky enough to see the northern lights. Next, it was about training for my ‘Everest’. I saw it as my Everest as part of me thought I couldn’t do it. I mean, cycling 100 miles is a big challenge for anyone, let alone someone with IBD. But I knew I had to try. At frst I started small, building my strength up, and at the end of every big ride, I congratulated myself on completing the 30, 40 or 50 mile ride despite having Crohn’s Disease. However, the more I recited the saying “despite having Crohn’s Disease”, the more it seemed to drag me back and make me give the disease more power than it deserved. Especially as this saying could easily revert to “I can’t do X, Y or Z because I have Crohn’s Disease”. So on World IBD Day this year, I decided to jump in again and I signed up to cycle 80 miles across London. This time, though, it wasn’t despite of having Crohn’s but BECAUSE I have Crohn’s disease. This is because I really wanted to do the ride as it was a great route, but I knew I wasn’t quite physically ready for it. I could have waited to do it next year, but I might not be well enough to do it then so I needed to do it now and do it 11

BECAUSE I have Crohn’s disease. I somehow did it, although there were times I didn’t think I could continue as after 50 miles my legs had gone. I had to walk up a lot of hills, but once at the top I always got back on my bike. The training weeks ticked past, and soon I had cycled over 1000 miles since starting the training, and my Crohn’s Disease had not stopped me once; if anything the training seemed to be helping my Crohn’s, although that could be the endorphins speaking! Come D-Day I knew I was ready and that nothing could stop me…except for a fat tire maybe! But thankfully all went fne and I climbed my ‘Everest’. That could have been the end of it. I had achieved what I set out to achieve, so no reason to continue. But now my mantra of doing stuff BECAUSE I have IBD was unrelenting. So I decided to make the most of my new ftness as who knew when my next fare would happen. The ‘logical’ next step was to cycle the 200 odd miles from London to Paris. It seemed like an easy thing to do as I could cycle over 100 miles in a day, so doing about 70 miles each day for 3 days couldn’t be that hard. When the day came to set off, though, I hadn’t been so scared since my surgery. I mean, I have Crohn’s Disease, what hell was I doing? Cycling from London to Paris by myself? That’s what other people do, and by that I mean ‘healthier’ people. The heavy rain that was forecast for the frst two days didn’t help either, but I pushed through this negativity and got my head down. Always reminding myself why I was doing it instead of why I couldn’t do it. Come day three, the rain had stopped and the sun broke through the clouds, giving them all silver linings. This put a silly grin on my face as part of my mantra was that anything that I did BECAUSE I had IBD was in fact my silver lining of my disease, as I wouldn’t be doing them had it not been for my IBD. Reaching Paris, I was in dream land. I couldn’t believe I had made it. Staring up at the Eiffel Tower, I felt that anything was possible, all I had to do was believe, which was handy as I only had two days to recover and get myself to Scotland. You see BECAUSE I had IBD I had signed up to join a friend on her challenge of summiting the highest mountains in Scotland, England, and Wales within 24 hours. Again I could have waited for better weather and done it next year, but I couldn’t take that chance so I said YES and made my way north. I either hadn’t recovered or eaten enough on the morning for fear of needing the toilet half way up Ben Nevis in Scotland. Whatever the reason, about 30 minutes into the hike, both feet were cramping up and my legs went to jelly. To help me carry on, I started reciting a little ditty to myself, along the lines of “worst things happen at sea” but a bit 12

more IBD focused: “Worse things happen in a fare, fares have happened to me, so don’t let this beat you, don’t you dare!” It worked, as I made it to the top with everyone else and summited the other two mountains as well, completing the challenge in 23 hours and 13 minutes. Doing both challenges had left me very stiff and with pain in my feet, calves, left hip and thighs, but it was all worth it. The pain strangely gave me a great satisfaction of pushing myself to the limit and all BECAUSE I have IBD. Although it hurt everywhere, there was one place it didn’t hurt….my stomach. I wonder what I’ll do next BECAUSE I have IBD? BRIAR L. @RAWLIBRARY wamblecropt.wordpress.com It’s crazy to think that it’s only coming up to three years since I was diagnosed with IBD. Granted, I’d had symptoms for about two years before I went to the doctor, but still – the idea that there was life before diagnosis seems almost impossible, and yet, there were about eighteen years of sweet simple freedom. Now that I’m post surgery #1, and I’ve got a temporary ostomy, it’s the frst time in years that I’ve been able to live semi-normally. I can go out without scoping out bathroom possibilities, without keeping tramadol on hand. I have freedom again, and it’s amazing. Because I never got into remission – life had been a constant fare of varying severity for years – I haven’t had a chance to feel this way in so long. I still have to watch what I eat, even though the ‘bad’ bit has been taken out – it may be a little IBS on the side, or related to the fact that my gastro and surgery team is now reevaluating my case with regard to whether it’s ulcerative colitis (as previously thought) or Crohn’s disease. It’s all part of the journey, right? My rule of thumb is, somewhat depressingly, ‘if it’s healthy to the average person, I probably can’t handle it.’ Raw veggies, anything high fbre… all bad news. Refned carbs are my jam – I always try to have something like pretzels on hand to chew on when I’m peckish, since I can handle them even when I can’t manage more exotic things. I also try to always have chocolate or another sweet treat around, since they don’t tend to sit too 13

badly (unless they have high fructose corn syrup, which is mercifully rare in New Zealand food) – it’s always nice to have something small and delicious to cheer you up when you’re feeling awful! I’m lucky to have some amazing support in my life – my mum is always keen to come along to doctor’s appointments to stay informed, and I have some great friends who have been really understanding. I’ve also gotten involved with the local support group (Crohn’s and Colitis Auckland), and as well as having the chance to chat with like minded people, it’s also been brilliant to get a chance to help out – I manage our social media pages and was recently made secretary – and unoffcial ostomy vsociety liaison! I’m not normally one to have inspirational quotes and the like, however, ever since I discovered the ‘Girls with Guts’ online community, I’ve kind of taken that mantra to heart – I may be a girl with a busted large intestine, but look how strong I’ve managed to be – and I try as hard as I can to project that strong image around others. Being strong is the one thing that I would encourage among the newly diagnosed – strong enough to be yourself, not just your illness – but also strong enough to know when to ask for help. Listen to your body, listen to your doctor, and don’t be ashamed to be sick, just because it happens to be a so-called ‘unmentionable’ part of your body that’s not working so well. Briar Lawry is from Auckland, New Zealand, and works both as a writer and in the book industry. As well as working with her local IBD organisation, she runs wamblecropt.wordpress.com, a Crohn’s and colitis related blog. KRISTIN W. @SEMISWEETCOLON ucmewithhope.tumblr.com I’ll never forget the day I was diagnosed with Ulcerative Colitis. The doctor walked in after I was recovering from my colonoscopy, and I was told a whirlwind of things. My head was spinning, and I heard a lot of medical words that didn’t mean a thing to me. But the word I remember most? Disease. Disease. Disease is serious. Disease is something that has no cure. Healthy people don’t have diseases. I had a disease, and it was called Ulcerative Colitis. Before that period of a few months, I was as healthy as could be. A full 18 years of good health, an 14

active lifestyle, straight A’s, and a social life. I was a senior in high school, captain of my tennis team, had just received a full academic scholarship to The University of South Alabama, and had plenty of friends. It was this life that I so desperately wanted to get back to. I had no idea what my diagnosis meant. I had no idea that having an autoimmune disease meant that my life would change forever from that point on. The symptoms I had been experiencing up until that point were debilitating. I was losing severe amounts of blood, could not leave the bathroom, could not eat, and began rapidly dropping weight. My parents were clueless, I was scared, and we all were kind of frozen in time because of the fact that my entire healthy life suddenly had a kink in it. I never made it to the state championships; I remained in the hospital. I was mad at the world. I didn’t understand why I had been thrown this curveball. From going to not taking medicines at all to taking drugs every day was mind blowing to me. I remember asking my doctor how long I would have to be on these medicines. In my mind, I was already assuming I’d be off of them in…a month? Maybe two? He laughed at me and scrawled out a little timeline of my life on the back of his notepad. My whole life. My whole life on these medicines. I didn’t understand. Steroids brought me back to decent health, but at the beginning of my frst semester in college, I spiraled out of control again. I dropped classes, lost close to 20 pounds, had to move home, and became bedridden. I could not put a bite of food in my mouth without running to the bathroom, and cried out in pain on the couch when spasms of pain would shoot through my intestines. The thing I remember most during this time was the depression. The inability to accept what was happening to me, why it had come back on me in the worst form of pain I’d ever felt. My social life was gone. I was chained to my house, to the bathroom. I refused to go outside. I felt very, very alone. I slowly came out of this fare, and gradually moved back to my apartment. I entered that lucky period of remission that I now realize is so rare with an autoimmune disease. Four symptom free years later, I walked across that stage and received my diploma, but what I wasn’t telling anyone was that my symptoms were returning again. For almost three years after graduation, I went up and down with my health. I had to leave my frst full time job as an Art Director because I could barely get off the bathroom foor in the morning. I tried everything: diet changes, lifestyle changes, and new medicines. Nothing worked. My quality of life was gone, I had lost friends, and I was on the highest powered and most dangerous treatment, receiving infusions through an IV every 6 weeks. It’s a terrible, helpless feeling when you have no control over your life and 15

not even the strongest medicines will work for you. When this didn’t help, I knew I had to make a decision. That decision was the hardest one I’ve ever had to make: having my colon removed. On October 15th, 2013, I had my colon removed at the Cleveland Clinic in Ohio. After three years of pain, blood loss, zero quality of life, harsh medicines, and a hate for food, I woke up symptom free. With no colon, my immune system no longer had anything to attack. Even through the surgery pain, I could no longer feel that sick feeling I had felt every single day for the past three years since coming out of remission. When I was able to eat my frst full meal, I braced myself for the usual cramping and pain, followed by a run to the bathroom, but nothing happened. I felt nothing. There was no pain. Nothing. I was so happy that I cried. In the next 9 months, I will face two more surgeries. At the end of this, I will have a new “colon” made from the extra small intestine that we all have, and will no longer need the chemo medicines and steroids. It’s such a scary road, and I’m dealing with things that no 24 year old girl wants to have to deal with. But I am symptom free for the frst time in three years. I’m going out and living. I’m savoring every bite of food I eat that isn’t giving me pain, every walk on the bay where I don’t worry about a restroom. I feel like I’ve been given a second chance at life, and I’m enjoying every single second of it. My disease made me lose friends, but I’ve realized who my true friends are. My disease ruined relationships, but I’m now engaged to someone who never left my side through these last three years. I fnally have my light at the end of the tunnel. You never know when good health will be taken away from you. I never did anything to ask for this; it just happened. But it has given me so much appreciation for the smallest things in life. Never take your health for granted. If you’re able, go out and live. 16

THINGS TO DO WHILE STUCK IN THE BATHROOM a creative list of activities to do while stuck in your favorite room. BY BRIAR LAWRY [FROM WAMBLECROPT.WORDPRESS.COM] Reading the backs of shampoo bottles can only get you so far when you’re on intimate terms with the bathroom. Here’s a handy list of ways to wile away the agonising hours (if you add up colitis bathroom time, it gets a little scary!) in the loo. Do your nails. Only applicable when you’re not in writhing pain. Put on moisturizer. Nothing like a bit of tearing up to help it soak in! Listen to music. Especially good if you’re worried about unseemly noises, just bring along a iPod dock and crank it. Although, let’s be honest, if you’re at the point where you’ve been diagnosed with an IBD, noises are probably the least of your concerns. But you can choose music to suit your pain/movement mood! O Fortuna is best reserved for special occasions. Wail in pain. Because sometimes it’s all you can really do. Sing. Not just for the shower anymore! Serenade your fatmates with your musical prowess! Cry. 17

Read. A Kobo or Kindle is your best friend. Best thing is trashy teen novels that you secretly want to read, but don’t want the perceived shame of carrying around the book itself. Plus they are generally fairly straightforward when it comes to reading comprehension, so you’re unlikely to miss anything crucial is your eyes glaze over during particularly bad waves of pain. Internet. Whip out the old smartphone. Read up on the news, or check out a colitis/Crohn’s forum or support group. I’m a particular fan of IHaveUC. com and both the CrohnsDisease and IBD subreddits on everyone’s favourite Front Page of the Internet. Text people. Ponder. Eg. when will the drugs work / should I just get surgery / should I just get surgery NOW by myself with a kitchen knife / was the cheesecake worth it? Philosophise/theorise. If Archimedes could make scientifc discoveries in the bath, why can’t you do it on the loo? ...or just think about how delectable those painkillers are going to be when they start kicking in. DO YOU HAVE A FUN LIST OF ACTIVITIES YOU LIKE TO DO IN THE BATHROOM? SHARE WITH US! [email protected] 18

PATIENTS TURNED ADVOCATES These advocates and IBD patients put their best foot forward when it comes to spreading awareness for the IBD community. Their stories and work are inspiring and help shine a new light on how much it can help fellow IBD’ers feel connected. BROOKE ABBOTT THE CRAZY CREOLE www.crazycreolemommy.com MOMMY CHRONICLES The Crazy Creole Mommy Chronicles was born in January 2012 by Brooke Abbott. In 2009, Brooke Abbott traded in her production notebook for a diaper bag with the birth of her son, Jaxon Lee Coltrane. While navigating through motherhood, Brooke began to tweet about her adventures with her newborn with the hashtag #CrazyCreoleMommy. The stories behind her tweets and Facebook statuses grew larger than the allotted 140 characters and by 2011, her new life needed its own vehicle. In 2011, Brooke Abbott’s life took a sudden left turn. She suddenly found herself a single mother with a stalled career and moving back to Los Angeles with no plan. The initial intention of The Crazy Creole Mommy Chronicles was to share her stories of life as a single mom with her son, Jax, through the blog. However, in April 2012, Brooke’s life was forever altered when her illness, ulcerative colitis, almost took her life. Brooke was now a single mother; no job, no health insurance, no colon and staring down the barrel of 30! At the encouragement of her mom, Brooke turned to her 19

blog to come out of the “colon closet” and share her story in hope that it would not only be therapeutic for her, but also help other young parents suffering from IBD. The response was more than what she expected. The Crazy Creole Mommy Chronicles’ mission changed over night. With the overwhelming amount of emails of gratitude, love, support and questions, Brooke found that this platform was a perfect source of information, support, tools and humor for parents facing physical challenges. The Crazy Creole Mommy Chronicles is a personal account of a mommy with an active normal preschooler, who sometimes can’t bend her fngers, and with a fake colon who fnds a way to laugh at it all. Brooke’s life has completely changed since her diagnosis. “My life is completely different than before. I worked in flm and was on set from 12-15 hrs per day on any given day. I was very active and travelled often. UC changed my life more than becoming a mother has. It also put a strain on my relationship with my son’s father. So now I am a single mother who blogs from home. A long way from a production coordinator with a two income household.” She is fortunate enough to have an excellent support system, and shares her love for her writing: her mother, cousin and son. “My writing allows me to release and feel like I have some control. My cousin has Crohn’s so she gets it. My mother is the only person who has really tried to understand just what it is I am going through and my son gives me a reason to fght through it.” Brooke’s blog not only helps others understand the nature of having IBD and being a mother, but it is a therapeutic method for her. “My blog is told as in time live journey. I try to make living with IBD as normal as possible. So I talk about living an active life as a mom with a jpouch and/or IBD with tips and personal stories, I also do giveaways and just random stories. Basically, I’m trying to show that IBD is a part of my life, it isn’t my whole life.” Brooke didn’t let her fares rule her life, she stuck to a strict diet and had help from some of her favorite fare free foods. “My favorite foods to eat while in a fare are So Delicious Coconut Milk Mint Chip Ice Cream, Happy Family Pouches and Mashed Potatoes with Caulifower mashed in.” During her struggle with ulcerative colitis, Brooke tried numerous medications to calm her symptoms, including Prednisone, Colozol, Ascasol, Antibiotics, and Vicodin. Though she ended up losing her colon, Brooke didn’t let that bring her down. Her vibrant personality and sense of humour shine bright through her writing, blog and favorite saying that helps keep her face in a smile: “Let’s Get Er Done!”. 20

“I don’t really remember, but apparently every time I got really bad and was in the hospital I said it before they gave me something or did a procedure/test! My mom documents everything I’ve said or done on this journey. I like the saying, so now I use it often as motivation.” Through her writing and advocacy work, Brooke makes sure that she is always there to lend a helping hand to those who may not understand their diagnosis. “Educate yourself, your family, spouse and friends. Don’t let it get you down, talk it out. Don’t expect it to go away. Accept the diagnosis and live your life accordingly, don’t fght it.” More About Brooke In 2008, Brooke was diagnosed with Left-sided Ulcerative Colitis. Though it was a mild case at diagnosis, the disease rapidly advanced over a period of 4 years. In April 2012, Brooke was given a total colectomy after spending weeks in the hospital fighting a losing battle with her diseased colon. She was given an Ostomy as a transition between her colectomy and J-Pouch for five months. She now lives with an internal J-Pouch and her health continues to change for the better. Still without insurance, arthritis, and the inability to work as much as she could before, Brooke advocates for all those with severe and mild cases of Crohn’s & Colitis. Brooke has advocated for the rights of children, education, healthy families, healthy living and healthcare before she had a child of her own. She has been active in supporting charities that advocated for patients with Colitis & Crohn’s, AIDS, Cancer, Asthma & children with Autism. Brooke is currently working with the Crohn’s & Colitis Foundation of America as their lifestyle ambassador, blogging and advocating for patients with Irritable Bowel Diseases (IBD) like Crohn’s & the various forms of Colitis. Brooke & the CCFA are taking the mission of The Crazy Creole Mommy Chronicles and empowering these and all autoimmune disease patients with resources and tools to handle parenthood and their disease without diffculty. Before her life as a mother, Brooke worked in flm and television production and her passion for the arts and flmmaking spread into other adventures such as photography, writing and acting. With the takeover of motherhood & colitis, Brooke’s work in production halted. However, Brooke continues to photograph. Working under the name Bonzaibaby Photography, Brooke has photographed for actors such as Holly Robinson Peete, Valarie 21

Pettiford & Arthel Neville. Brooke is a single mother of a young son, Jax Honeycutt, and they currently reside in Los Angeles. Brooke is the creator and blogger for The Crazy Creole Mommy Chronicles, the Crohn’s & Colitis Foundation of America Lifestyle Ambassador, the Event Manager for Club MomMe Los Angeles, and the LA Happy Mama rep for Happy Family Brands. Brooke has also written for The Right Start blog owned by popular baby store The Right Start, and she has been featured in The Phoenix Ostomy Magazine & on CCFA.org. www.crazycreolemommy.com Follow Us On Twitter: @crzycreolemommy Follow Us On Instagram: @crazycreolemama RASHEED CLARK AUTHOR OF: THREE TABLETS TWICE DAILY a book of short stories about life with ulcerative colitis “I had my frst collision with colitis in 2007, as I was in the midst of training for a half-marathon. It really blindsided me because I felt as though I was in very good condition, both mentally and physically. A combination of medications put the disease into remission, and I wasn’t formally diagnosed with ulcerative colitis. That offcial declaration came in 2008 after another, more prolonged fare-up. In January 2009, I began taking prednisone and 5-ASA medications, and they worked wonderfully. I stayed in remission from early 2009 until December 2010, and that’s when things went awry. From that point I went through a number of treatments – Azathioprine, probiotics, restrictive diets, naturopathic remedies, Infiximab – all of which failed. I decided to opt for a J-pouch, and had my frst surgery in May 2013. That operation came with a number of complications. I still have a loop ileostomy and I hope to have the take down surgery in December 2013 or January 2014. While I was in my third year at the University of Toronto, studying communications and writing, I took a course called Science and Writing. That’s where I began to research UC 22

and write about my own experience with the disease. I haven’t exactly lived an exciting life, so I fgured it was the most interesting thing I could write about. I continued writing short stories about my life with UC and compiled them in a fourth-year course called Making a Book, in which students get to issue their work through a publishing house called Life Rattle Press. I wanted the book to give people who had never heard of ulcerative colitis an idea of what living with the disease is like; something more than a list of the symptoms. Three Tablets Twice Daily was published in 2011. I came up with the title based on the number of 5-ASA pills I took to treat my UC. I wouldn’t say that writing helped me heal, but it did help me cope. It’s diffcult to talk to people who don’t know what living with an IBD is like. Telling someone you soiled your pants is not only embarrassing, it doesn’t adequately convey all the diffculties that come with the disease: pain, worry, social isolation, and so on. Writing gave me a chance to really let out all the feelings of anger and frustration and sadness that I had a hard time communicating with the oral word. I think most people have never heard of Crohn’s or colitis. I had never heard of either until I started showing symptoms. So I wanted the book to introduce IBDs to people who had never heard of them, and not in the way that a pamphlet would. Most of the pamphlets I’ve read tend to gloss over just how serious IBDs can be, and they fail to illustrate what it’s actually like to live with the disease. I fgured stories about living with UC would give readers a better understanding of the disease and the toll it can take on people. All the stories in the book are my own, and they’re all non-fction and all of the research and writing and editing and revising combined took about a year.” Rasheed has even helped other members of his family in discovering and accepting their diagnosis. “A relative of mine who has UC only disclosed her condition to me after she read my book. I guess it helped her to know that someone in the family would really understand. Other readers have told me that the book helped them feel as though their experiences weren’t so strange, but in fact relatable to folks like me.” 23

“I would love to write more books in the future, especially now that I’ve had my colon removed. Ironically, I’ve had more intense UC-related experiences after the book was published. So I’d like to revise my frst book and add my experiences with surgery and an ostomy to create a more complete version. I’d also like to write about other topics that interest me, like soccer jerseys and the global population.” If you’re looking to read more about true events regarding life with colitis, Rasheed has some advice. “Read my book! No, I’m kidding. I would say take a proactive role in your disease. Do your own research on the disease and on treatment options and talk about them with your doctor. Don’t be afraid to ask your doctor questions or tell him/her exactly how you feel physically and mentally. Lastly, tell people about your condition if you’re comfortable doing so. It’ll help others understand why you may not always be up for a night out, why you can’t always cover their shifts at work, and why you may feel pretty crummy once in a while.” As far as his book goes, Rasheed would like everyone to read his entire book, but if you’re looking for a quick preview, he has some recommendations as to what page you should fip to frst, “I like Chapter 2, Toilet Runs and Traffc Reports, because it reminds me of the (probably foolish) lengths I went to just to get through a day at work while in the middle of a fare-up.” If you’re looking for some humor and insight on life with ulcerative colitis, make sure you pick up Three Tablets Twice Daily. For a great price and quick delivery, make sure you order your copy on Amazon. 24

EXERCISE: IS IT STILL POSSIBLE WITH IBD? When you are diagnosed or living with Crohn’s, ulcerative colitis, or Irritable Bowel Syndrome, your exercise outlook may seem bleak. But that isn’t the way it has to be. Exercise is a very important part of any healthy individual’s routine. Though it may be diffcult to imagine yourself exercising with your symptoms, hitting the gym should still be just as important as it was before your diagnosis. Not only is exercise a great stress reliever, it can help with those painful cramps that often come with fare ups. On days when your symptoms are worse than others, getting motivated to get your day started can seem daunting. Let those negative thoughts and feelings motivate you. Don’t overdo it on fare days, but do try to not fall into a funk. Walk at a slow pace on the treadmill, lift light weights with your arms, or simply stretch out on a mat. For some, exercise is an escape and a chance to begin a new adventure, regardless of their IBD severity. “I’m biking from London to Paris and summiting to the 3 highest peaks in Ben Nevis, Scafell Pike and Snowdon in just 24 hours because I have IBD. This whole doing stuff because of IBD is becoming addictive,” said Tom Hough of the Chronic Adventurer. 25

For Kristin Williams, ulcerative colitis gave her a boost in the direction of her exercise dreams. She is a certifed Pilates instructor and teaches classes, even though some days she isn’t feeling her best. “I’ve had to stay confdent and tell myself that I can work through anything. When I got my certifcation, it felt like the biggest achievement. No one around me knew why, but getting that piece of paper was such a huge validation for overcoming my mental and physical every day struggles and becoming a ftness instructor, someone people look up to for being in great shape and good health.” Since being diagnosed in 2007, though diffcult, Kristin has continued to keep her fast paced exercise routine. “I’ve been athletic my entire life; in fact, it was on the tennis court during a match that I really realized something was wrong pre-diagnosis. I ended up doubled over crying on the court and couldn’t go on with the match. Before that point, none of the symptoms I was just starting to experience had affected my ability to exercise. Since that diagnosis, I’ve realized how ridiculously important it is to exercise, because stress plays such a huge part in triggering my symptoms. Yes, there have been months where I’ve been so sick and bedridden that I couldn’t move -- but because of that, I’m so appreciative of when I CAN exercise, and I do.” On fare days it can be very nerve wracking to attempt any sort of exercise. Some suffer long periods of time in a fare but still do not want to lose sight of their personal ftness goals. “The downside to being in the middle of a 2 year long fare is that there are rarely good days. I have to take what I can get. A ‘good’ day for me is by no means a good day to a healthy person. I really make a point to go to my Pilates classes or do a routine on my own when I feel as if I can, because my days seem to be so much better when I can do that. I’ll go into a class feeling so uptight, and leave feeling completely relaxed. I know that’s so crucial for my insides! Plus, I’ve always liked being in shape, and anyone with IBD knows how important it is to feel as good as possible about yourself, because most days that’s just really hard to feel. People have seen me and said, ‘you look awesome! I would never think you’ve been through what you have.’ I’ll always take that as a huge compliment, because I work so hard,” said Kristin. On days, months, or years when you fnd yourself in a fare, you may fnd yourself wondering what exercises are safe and healthiest. “I absolutely love Pilates--since becoming a certifed instructor, I have routines that I’ve actually written up that I can follow from the comfort of my own home, and I love that. It involves free weights, 26

resistance bands, and a ring. It really works on toning your entire body without any intense cardio, which is wonderful for me. It’s the perfect balance of everything,” Kristin shares. Having access to a gym that can help cater to your specifc health needs is always a plus. “I still end up sweating and incredibly sore the next day, but I’m not doubled over and worn down like other exercise ends up doing to me, which ends up being more stressful for my body. Pilates routines are also easy to fnd on the internet, which makes it easy to follow along on your iPad or computer from your bedroom foor,” said Kristin. If you can’t muster up the strength to leave your house but don’t want to spend the whole day feeling guilty about not exercising, pick up some of your favorite exercise DVD’s and play them on your computer or iPad. Even stretching is considered an exercise! Check out the lower key classes your gym has to offer. Yoga is a great option for patients with IBD. The relaxing vibes of the classes can help de-stress and help you focus on rest. Getting out of the bed or even out of the house is what’s important. Emma, author of My Beautiful, Messy Life, has used yoga to help herself ease into a new lifestyle. “With yoga, it’s not about being good or the best. It’s about doing something for your body and mind. Just as there’s no crying in baseball, there’s no vanity in yoga. I’m capable of doing so much more than I could when I began to practice [yoga]. It’s something I can feel proud of, especially when my body has been pushed to the brink with my illness”, Emma shares in her blog. For Kristin, teaching her Pilates classes is where she fnds her break from running to the bathroom. “I go in every class dreading what might happen, but my body has politely given me a break for that hour and let me teach each time. Mentally, I am terrifed walking into that class, because I never know what is going to happen. UC is so unforgiving and surprising with its symptoms. I love getting feedback about how challenging the class was; I know that I not only pushed myself, but pushed my class as well. I want to give my class the best workout possible, and I’m not going to let UC stop that.” Start your day with a healthy choice for breakfast; a bad food choice can be a deal breaker when you’re trying to get yourself up and at ‘em. A lactose free smoothie with a 27

banana, greek yogurt and some protein powder of your choice can be great for a day when you’re not feeling so hot. Make sure you’re avoiding caffeinated, sugary or dairy products. Make yourself a great playlist full of music that you love and that inspires you to listen to at the gym. Powering up those tunes as soon as you wake up can make tying your tennis shoes a little easier. Having an auto-immune disease such as Crohn’s or colitis can also help motivate and drive you to work harder. “I know how easy it is to gain weight from steroid use and to drop weight from not being able to eat because of pain, so I’m always working so hard to keep my body the way I love it and to a point where I feel confdent. There have been way too many times where I’ve cried about how skinny I’ve become from weight loss or how my abdomen looks bloated from steroids. It’s such a frustrating thing to not have control over your body, and exercise is the only thing that can really somewhat give me that control and make me feel good about myself. UC defnitely gives me that desire and motivation to stay in shape and be happy with my body every single day, because I know how quickly it can be taken away,” said Kristin. Most importantly, make sure you know where all of the bathrooms are located in your gym. If you aren’t sure, scope out your surroundings. Don’t rule out running or walking outside, either. Know where the closest restaurant or public bathroom is at and be familiar with how long it might take you to get there. If you feel like you’re too anxious to even risk that but still want to enjoy the weather, browse online frst for a park or outside venue that has plenty of easy to fnd restrooms that can be located with a map. Don’t let IBD give you an excuse to stop being active. Don’t be too hard on yourself, but also don’t lose sight of what keeps you going every day. Make sure you are always being as healthy as you can be -- that can only make you feel better. Kristin knows that exercising gives you confdence and confdence can boost anyone’s health and mood. “It’s so important to feel good about yourself -- and I’m not talking about having a perfect body, by any means. I mean feel good about yourself by getting exercise and just staying in shape and knowing that you’re giving that gift to your body. I have such a bigger appreciation for good health since my diagnosis.” 28

I WAS DIAGNOSED; NOW WHAT? Being diagnosed with Crohn’s or ulcerative colitis may be confusing and scary, but there are ways to cope and people that are willing to help. Sporting events are still possible with IBD. Being diagnosed with Crohn’s or ulcerative colitis is tough, there’s no doubt about it. There are countless tests and colonoscopies are performed to determine countless factors. The one thing that newly diagnosed patients should remember is that you are not alone. Though it may feel confusing and overwhelming, your IBD support system doesn’t have to consist of only doctors and nurses. “Find others or a support group! It’s great for you and the other members,” suggests Niagara Ostomy Association. There are millions of people going through the same battle as you and understanding your disease from a perspective of someone who has paved the diffcult road for you is what can help the most. When you are frst diagnosed, the situation can seem scary. Terms such as cancer, hospitalizations, diet changes, and pain are most certainly thrown your way. “My advice 29

would be to stay calm. You’ve lived with it before diagnosis, you’ll live with it after and probably get better with treatment,” says Michael M., an indeterminate colitis patient. Don’t let pamphlets and brochures defne your personal disease. Everyone is different and even though there is no known cure for IBD, there are countless options that you can consider to make your diagnosis seem less daunting. “This is a low point, it does get better,” says Sarah R., an IBD patient. The very frst strategy that you should take into consideration is concreting your diagnosis. Many patients’ suffering is prolonged because they have been misdiagnosed. Second opinions are a must in the diagnosis process. Knowing and understanding as much as Tom H. (@foreveryibd) didn't let IBD bring him down! possible about your specifc situation is the most important step you can take for yourself. That way, you can not only fnd a medical team that you feel most comfortable with, but you can start understanding your disease from the inside out. Finding a gastroenterologist that makes you feel the most secure is an essential part of your treatment. Patients can fnd excellent medical care through advice from other IBD patients in your area, recommendations from internists, and most importantly, research, research, research. Reading resourceful and reliable books, journals and web articles on fnding a medical team that is right for you are widely available. The Crohn’s and Colitis Foundation of America has an excellent, interactive website that can help you fnd a highly acclaimed GI doctor in your area as well. Visit ccfa.org for more information. Lifestyle and diet changes are an imperative part of caring for your body with infammatory bowel disease. “Stay away from tomatoes, and now is the time to quit smoking and take plenty of vitamins,” says Carol Coxen. Though many patients have trouble giving up foods they love, it is comforting to know that there are still tasty options available for you to enjoy that can provide you with fare free results. Binding foods are the best option: white bread, pasta, bagels, crackers and hummus are a few. Make sure you are eating plenty of protein as well, red meat is not good for your colon. Stick to white fsh and chicken, stay on the more bland side and don’t eat anything too spicy! “Drink water and keep your colon hydrated at all times, even if you are having a good day,” suggests an active Yoga teacher with IBD. Staying hydrated is an important part of caring for your body with IBD. You lose a lot of essential fuids when going to the bathroom numerous times a day, so hydrating with water, G2 or other clear liquids is important. Stay away from soda or anything sugary. Diet changes aren’t the only new territory that comes with diagnosis. Having a good idea of what activities and what times you are most likely to go to the bathroom are important. If running or arguing with a sibling or signifcant other causes your trips to the bathroom to become more frequent, replace your favorite cardio exercise with something more 30

relaxing, such as swimming. Make sure you are explaining to close family members and friends about what you are going through. Even if you fnd it embarrassing, it is important for the people that you are around the most to understand so that they can help you if necessary. Some patients even fnd that family and friends become the most valuable support systems. “My best friend has been the best support system in my journey with IBD. She makes me happy when I’m feeling hopeless,” says Janet T. Another patient feels that her family has been a great support with her diagnosis. “My family has been my best support system, who has also had much experience with UC, and my IBD nurse has been excellent,” says Laura, a UC patient. Regardless of the severity or kind of diagnosis, researching is the best thing you can do for yourself. There are countless blogs out there full of amazing, positive advice from people that you can truly relate to. Try to steer clear from all of the negativity and people who have let their disease bring them down. It is understandable to have anger about becoming sick, but there is nothing better that you can do for yourself than fnding someone that has been through a similar situation. This will make you feel less lonely and scared. Keep dancing! Social media provides a great outlet for those who are newly diagnosed and confused. Twitter lets you search keywords such as, “crohn’s, colitis, ostomy, or jpouch, even IBD.” There you can fnd people who write short synopsis of their everyday lives. Twitter is also a great source for fnding quick answers to your most dire or personal questions. The most important piece of advice that you can consider when being diagnosed is to 31

keep your head up. Crohns and ulcerative colitis defnitely require a fghting spirit. Don’t let your diagnosis discourage you. In the beginning and during fares, understand that you might not be able to have as much energy as you had before, or eat the same things that your friends and family are eating. Let that be a lesson for you and try not to bottle up too much anger. If you feel like you need to talk to a professional, defnitely do so. The best thing you can do for yourself and your new diagnosis is keep yourself as healthy as possible, both inside and out. “The disease only wins if you give up fghting! So keep going no matter what,” suggests Sarah B. You have to remember that this isn’t the end of your life, it’s a chance for a new beginning. To make new friends and learn things about yourself that you never would have known without IBD. The diseases are tough, but you will discover how tough you truly are by living every day as fully as you possibly can. Life with IBD isn’t always a walk on the beach, but don’t let it discourage you from a trip to paradise! 32

FINDING A TREATMENT PLAN THAT WORKS by Angela Dimos A pharmacist tells us more about the drugs we put into our body when diagnosed with Crohn’s or ulcerative colitis. Helping patients on a daily basis with their medications has been signifcantly rewarding in my life, thus far. I will just be fnishing my Doctor of Pharmacy degree in May 2014, and as I make the transition from a pharmacy student to a pharmacist I have started to realize how I will truly impact the care of my patients. It is important to realize that a pharmacist’s role is not restricted to counseling about medications. Our realm of expertise projects further than ‘counting by fves’ or checking prescriptions before dispensing. Amongst many other roles, we have an opportunity to impact a patient’s lifestyle. This spans from having a conversation about proper diet and exercise, to smoking cessation, and how to make changes based on certain conditions (such as diabetes) that will lead to a healthier lifestyle. This brings me to how infuential a pharmacist can be in a patient’s life that is struggling with infammatory bowel disease (IBD). From daily suppositories, to Remicade infusions, to chronic or long term steroid therapy; the life of a patient with IBD is focused around when the next Pentasa dose should be taken or learning on a day-to-day basis how to manage side effects from medications. The medication list of a patient with IBD can become quite extensive and overwhelming. Pharmacists have a pertinent role in counseling on the lengthy list of medications, confrming there are no drug interactions, monitoring for 33

side effects (especially with long-term steroid use), and answering any questions focused around IBD. We are here to talk about why each medication is prescribed for IBD and why it is important to take, but it is also important to think about what medications should not be included on that medication list. Yes, the medications that are prescribed to help control IBD are necessary; however, medications to avoid in IBD are just as important. IBD involves the gastrointestinal (GI) tract (AKA the digestive system) where many medications, when taken by mouth, will travel through to either be broken down or go somewhere else in the body to work. Some medications are broken down in the GI tract and therefore it is important to watch for these medications that are acting in the GI tract. Since the digestive system is not working properly, medications that exhibit their effects in the GI tract may worsen IBD symptoms; in addition, medications that require a functional GI tract may not be effective in a patient with IBD. There are many medications that someone with IBD should avoid. Included in this list are non-steroidal anti-infammatory drugs (NSAIDs) which are ibuprofen (Advil) or naproxen (Aleve). NSAIDs are common over-the-counter medications that are typically used for pain relief and also for the anti-infammatory effects. The reason these medications should be avoided is because they may increase the risk of causing a fare or worsen symptoms of IBD. Also, NSAIDs can be unfavorable on the stomach and have the potential to cause stomach ulcers. Since the GI tract is already compromised in IBD, the protective mechanism in the stomach against NSAIDs is also compromised; thus patients with IBD are more at risk for ulcers or worsening of IBD symptoms if NSAIDs are used. It is important to understand how and why certain medications may act different in patients with IBD. Pharmacists play a signifcant part in helping patients understand their medications. Pharmacists are advocates for the care of patients, do not hesitate to walk up to the pharmacy counter and meet your local pharmacist! Angela Dimos, PharmD Candidate 2014 Northeast Ohio Medical University Rootstown, Ohio 34

HOLISTIC SPOTLIGHT: SEAFARMACY by Ms Arifa Grebennikova - DIRECTOR, SEAFARMACY LTD - www.seafarmacy.co.uk Seafarmacy tells us a little about an IBD Natural Remedy that some patients have found helped them achieve remission. I’m sure there is always a story behind every company. Seafarmacy is not an exception. This is a story of my miraculous recovery from IBD. I think every IBD patient still remembers the day when he or she have heard about the diagnosis from the doctor: “You have ulcerative colitis (or Crohn’s disease). This is an Infammatory Bowel Disease. We don’t know the reason for it and we have no cure for it. Your chances of the development of the colon cancer are very high. You may end with the colon surgery soon…” I was 33 years old those days. It was like a thunder on a blue sky and sounded like it was not negotiable; I just had to accept it and follow the medical advices only. My condition was awful. I felt like I had a severe disability and my active life was completely destroyed by the disease. For 4.5 years, I tried different types of medication including Mesalazine (and its variation), the immunosuppressive drug Azathioprine and two courses of Prednisolone treatment. All these medications didn’t perform well and remission was the unachievable goal. In October 2011, I found KELP Jelly. After fnishing the third jar, I felt incredibly healthy, something I had not felt for the last 4.5 years! I achieved remission only by eating natural 35

seaweed product! I was taking one jar of Kelp jelly per month afterwards and reducing my medication daily intake. In April 2013, I stopped taking any medication for UC completely. Nowadays I have a healthy diet which includes all types of fruits and vegetables. For maintaining my remission, I am taking one jar of KELP Jelly per month. I found out that KELP Jelly has been clinically tested at the Central Clinical Hospital of the Russian Academy of Science, Moscow. It has received the certifcate of state registration as a food product for dietary (health) nutrition for the sufferers of gastrointestinal disorders and received a lot of good responses from IBD sufferers in Russia. I know how miserable life may be with IBD. IBD is a merciless disease, even to children whose happy childhood may end when IBD starts.That is why I’ve decided to bring KELP Jelly to the UK. In January 2012, I met the inventor of KELP Jelly, Professor Vyacheslav Sova, Institute of Protein Research, Russian Academy of Sciences, Moscow, and we developed the new taste of the KELP jelly. In October 2012, the frst batch of KELP Jelly came to the UK. During 2013, Seafarmacy has been also supported by the UK Government business initiatives. I will soon publish the feedback from Simon C., who has UC, as he continues the course of KELP Jelly at the moment. But I already know that he feels much better now. Please visit the testimonial page on our website www.seafarmacy.co.uk for the feedback. As for doctors, I never expected to receive the feedback from them, as they don’t treat patients with natural remedies, unfortunately. The development of the market of the new product is a very diffcult task, but I always remember the people who are severely suffering from IBD and those families with children who had to face the colon surgery as early as the age of 4! This lifts me out of bed early in the morning, and I am moving on. Everyone can order KELP Jelly online and we will send it to any destination around the world. Hopefully KELP Jelly will be on the shelves in health shops as soon as next year. I would like to wish all of you to keep faith in the success of natural healing. It is necessary to help your body heal itself and it will reward you with a joy of active life and new discoveries. Stay positive in any situation! If you have any questions, you may send them directly to [email protected] and I will be more than happy to answer! 36

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OVERCOMING OSTOMY CHALLENGES by Johnnie Cason FOUNDER OF OSTOSOLUTIONS, INVENTOR & USER OF THE OSTOMY POUCH DISPOSAL SEAL Living with an ostomy is a challenge. But in almost all cases, it’s a second chance to regain our health without dealing with the life-threatening illness or devastating bowel or urinary problems that lead up to ostomy surgery. I did everything possible to avoid having a permanent colostomy. Mine has been a long thirty-two year journey, flled with setbacks and triumphs that have ultimately led to living life to the fullest. In 1980, I was a healthy 21 year-old college student at Florida State University. I started having abdominal pain, and was diagnosed with an inoperable grapefruit-sized pelvic tumor and I was aggressively treated with chemotherapy and radiation. After fve months of chemotherapy and two weeks of radiation to my pelvic area, a tumor-related bowel blockage was discovered. An abdominal surgery was needed to remove the blockage, and radiation was restarted. I was given fve additional weeks of radiation, resulting in signifcantly more radiation than the usual protocol. At the same time, a new regimen of chemotherapy was started since the frst combination of drugs had no effect on the tumor. Eight months into treatment, my doctors told me that the treatments had failed and that I had only three months to live. Despite this prognosis, I never gave up hope and continued on with chemotherapy. Finally, after a year of chemotherapy, I received the frst positive news since being diagnosed. A CT scan revealed all that remained of the tumor was scar tissue. The recovery from treatment was slow, the road back to health was hard, but I was alive and determined to pick back up where I left off. I graduated from Florida State, got married, and despite having been told I wouldn’t be able to have children due to the cancer treatments, I have two beautiful daughters. As I was busy with my career and raising a family, I lived with signifcant urinary and bowel functionality problems for many years. Over time, the treatments that saved my life had taken their toll. In 2002, I developed a complex condition related to radiation damage that could only be fxed with surgery. A colo-rectal reconstructive surgery was performed that resulted in an ileostomy, designed to be temporary during the healing process. 38

I can remember fghting so hard to regain my health after surgery and doing everything possible to regain normal bowel function once the ileostomy was reversed. During my time with the temporary ileostomy, I was not very accepting of it. After eight months with the temporary ileostomy, reversal surgery was performed. Due to the pelvic damage caused by the radiation, the surgery failed. In 2003, I had my fourth abdominal surgery resulting in a permanent transverse colostomy. Even though I was devastated that the colo-rectal reconstruction had failed, I know for certain that I would not be alive today without the colostomy surgery. Finding the right ostomy system is very much a personal choice but I believe that many times people living with ostomies fnd a system that works and just stick with it. For me, I found that I could change my closed-end pouch in a matter of seconds and put on a clean, fresh pouch. However, there was one major disadvantage to using closed-end pouches in that there was not an odor-proof way to dispose of them. I was determined to fnd a solution to this problem. I tested every conceivable bag and disposal container I could think of. After many trials, I came up with the idea for a sealing mechanism for used pouches known as the Ostomy Pouch Disposal Seal. The seal snaps onto the opening of the used pouch to create an odor-proof closure, much like the seal would snap onto a pouch wafer. The seal works on both closed-end pouches and drainable pouches with the new clip-less technology. I founded OstoSolutions, LLC in order to share this simple solution with the ostomy community. I believe all of us in the ostomy community face challenges similar to those I encountered. It is my hope that anyone who fnds themselves limiting the activities they once enjoyed continue to seek out solutions, try new products and pouching options, and be open minded to make a change. 39

The first and only, patent-pending Ostomy Pouch Disposal Seal Simple to Use Care-free Pouch Disposal “I’ve been using OstoSolutions’ Ostomy Pouch Disposal Seals and love them. They’re wonderful, and have eliminated the disposal odor that I found so embarrassing. I’m now willing to accept invitations to someone's home, and travel is so much easier! Most of all, my husband appreciates the improved odor in our shared bathroom. Thank you, thank you!” - Jeanne Available to fit Hollister, ConvaTec and Coloplast ostomy pouches www.OstoSolutions.com | info@OstoSolutions | 888-549-3555 40

CREATIVIBD by Kristyn T. CUREFORCOLITIS.WORDPRESS.COM A brave woman shares her journey and how her artistic talents and various array of treatments have helped steer her in a new direction. I agreed to write about my journey with ulcerative colitis over one month ago. I wondered over the last few weeks what was making it so diffcult for me to sit down and write this. I hashed it up to wedding planning and studying for my licensing exams. However, as I sit down now, I am surprised by the waterfall of tears streaming down my face; I guess it was more than wedding planning and studying that was keeping me from reliving my many years of illness. I was diagnosed with ulcerative colitis over 15 years ago at the age of 19, and a day has yet to pass when I can have a bowel movement without inspecting it for possible traces of blood or mucus. I have had more fare-ups than I can keep count of. Some fares lasted for around a year or so, one lingered for about 3 years. If you suffer from IBD, I’m sure none of this is shocking to you and only too familiar. I guess I passed the realm of “normal” when I had my frst colonoscopy before the age of 50, and instead at the age of 19. I was just beginning my sophomore year of college as a painting major when I experienced my frst symptoms of ulcerative colitis. I remember being out in the woods where I had carried all my paints. While painting, I was seized up with a cramping sensation. Since my perfect landscape location was far from a bathroom, I did what any sensible young lady would do and popped a squat. As I bent over to cover up the evidence, I noticed small streams of blood in the pile. The blood and cramping continued over the next few weeks until I fnally went to the school health center and was relieved to be diagnosed with hemorrhoids. The doctor, in a very thick Chinese accent explained what a hemorrhoid was. I don’t think I told anyone about just how bad it was. I began to feel hopeless and helpless and cried a lot. I eventually developed pancreatitis on top of my ulcerative colitis. I couldn’t even eat a saltine cracker without buckling over in stabbing pain. I eventually admitted myself to the emergency room. Prognosis: 41

acute pancreatitis and ulcerative colitis. I had my frst colonoscopy during this hospital stay and also began my frst regimen of Prednisone. The only dietary restriction they put me on was not to eat any salt. After that incident, my pancreatitis seemed to subside. A recent blood test revealed “pancreatic insuffciency” but my doctor didn’t seem too concerned about it. After that frst hospitalization, I decided to change my life around, including my major. I am always looking for explanations for why this illness has come into my life and why it continues to poke its ugly head in time and time again. I think it started with the doctors telling me that stress was causing the symptoms. I started blaming myself for getting sick, for not taking better care of myself. Doctors always said I was an anomaly. Every time I would go to my doctor, he would threaten surgery. He had me on such high doses of Prednisone that I didn’t even bother with avoiding food with salt; the horrible side effects were inevitable. I focused on my art and in particular on two main themes: that of “starting over” or “beginning again” and that of “spinning.” I can either wallow in self pity and be sick as a dog or take as much control as possible and do what I can to take care of myself and get well. I would not have had the time, money or the emotional strength to do my art had it not been for the continued support of my family and friends. It was not until I had that frst doctor who was willing to treat me like a human and explain the benefts of 6-mp, that I was able to have a bit more control over my illness through medication. After fnding the seemingly perfect balance of Western medication to maintain my health, I had an interesting experience with a Japanese herbalist that eventually helped to stop and soothe my symptoms. My experience with the Japanese herbalist opened my eyes to the existence of alternative therapies for treating ulcerative colitis. Currently, I am the healthiest I’ve ever been. I see an herbalist/acupuncturist twice a week and take 45 supplements a day, in addition to an herbal tea that I prepare every three days and drink twice a day. My goal is to be off all Western medications and be pregnant in the next year. Acupuncture, herbal medication, western medication, meditation, qigong, diet, lifestyle change, yoga, I’ll try it all if means I can be healthy and free of ulcerative colitis. Even my husband has adapted many of the changes. For those of you who are newly diagnosed, my advice to you is to keep living your life. I learned this from a Reiki master who was treating me for a bit. Put your hand over your descending colon (along the lower, right section of your abdomen). You can do this over your clothing. You don’t have to put pressure, just place the hand there. If your left arm gets tired, you can switch to your right hand. Do this when the feeling hits you. I never had an accident again after I learned this technique. Also, don’t lose your sense of humor. IBDs are not only debilitating at times but also can be very embarrassing. It’s nothing to be ashamed of and you’d be surprised how many people have IBD, or just stomach issues that they felt just as uncomfortable talking about. 42

CREATIVIBD IBD’ers share their favorite outlet that helps them to cope with their disease: art. “Little Miss Self Destruction” by Kristyn T. “Don’t Really Feel So Well” by Kristyn T. “A Shrine to My Colon” by Kristyn T. 43

“Three” by Kristin W. @semisweetcolon “Pen and Needle” by Kristin W. “Midsummer’s Lunch” by Kristin W. “Fairhope Resident” by Kristin W. DO YOU HAVE THINGS YOU HAVE CREATED TO COPE WITH YOUR DISEASE? SHARE WITH US! [email protected] 44

FAMILY AND LOVED ONES LIVING WITH UC, WITHOUT IT; WATCHING A LOVED ONE BATTLE UC By Daniel Balyint @BALYINT The most important part of being diagnosed with infammatory bowel disease is feeling the love and support of family and friends. Without that support system, most of us wouldn’t be here to tell our inspirational stories. Here, a boyfriend tells of his journey, watching two of the most important people in his life being affected by IBD and how it changed his view on life, love and health. I have lived with ulcerative colitis in my life since October 2012. Not once have I had a painful bowel movement, passed bloody stool, or struggle with insurmountable pain to the point that I became sick in this time. I have had to speed through traffc, counting down the miles to the next exit with a bathroom on the highway, anticipating sure disaster at any moment. I have been very accustomed to where the bathrooms are in the local grocery store, Wal-Mart, mall and restaurants all over town. I have become aware of packing toiletries and regularly buying toilet paper and moist wipes to help in any way. I have ulcerative colitis by extension. My girlfriend has battled through this awful disease for what feels like years, I can only imagine how she feels. Let me start off by saying that my own father almost lost his life to ulcerative colitis before I was born. He would have lost the battle if it weren’t for an emergency surgery to remove his colon and leave him with an ostomy for life. Strangely, however, I have never really known much about this terrible disease until I watched my girlfriend battle it with my own two eyes. To be honest, I didn’t even know what my dad suffered through, at all, until recently. I’ve found that UC is a strange beast. It will cause some people to go silent and just live with the cards they have been dealt, like my father. I have never really heard him talk 45

about it until he was helping my girlfriend cope with it. It seems to be something he is ashamed of, when he should be proud that he made it through that, and went on to be a successful businessman. My experience with UC has been more with my girlfriend than with my father. That is not to say that I know he didn’t suffer. He went through it before I was born, and doesn’t speak much about it because it is what it is now for him. At least that is how I see it on my end. I have gained insurmountable respect for what he went through and what he has been able to do, after watching my girlfriend. In October of 2012, I received a text message from my now girlfriend telling me she had a parasite go undetected for months and that she has a IBD disease called ulcerative colitis. To me, those were just fancy medical terms saying that she was sick and she’d be okay. It was only then that I spoke to my parents and found out what UC was, it was why my dad had the ostomy that I just thought was normal for some people. I immediately did not like where she was, I knew she was in trouble. As I write this, I do not want to describe the deterioration of a UC patient; rather, I want to describe what it is like to live with the disease, without ever actually having it. Never will I claim to have suffered as a UC patient does, because I have watched that suffering. Not once will I try to tell you I know what having UC is like, because I don’t, I only know what it does to someone physically and emotionally. There are multiple dimensions to UC, the most important being the UC patient. However, in most instances, for every one IBD patient, there are whole families and signifcant others who live with the disease, without it. I am the signifcant other, living with UC, without it. It is hard to describe the sensation of watching someone battle this disease. My girlfriend went through an extreme case of UC, so severe her doctor hadn’t seen it that bad in over 20 years of practice, that is what I am basing my story on. My experience may differ in some ways, but I am certain it is similar to many others. Patients suffering through UC do not choose to have this disease. No one in their right mind would choose to suffer in the way that UC patients do. In a way, a patients’ signifcant other has chosen this disease. There are a lot of people who would simply get up and leave when they hear the news. Plenty of people, not all, would leave after fnding out just what exactly UC consists of. No matter what stage in a relationship a couple fnds themselves, this disease will make or break it. The frst decision to decide to stay and fght through this together is an easy one, of course you want to stay and help the person you love in any way you possibly can. That decision will be the easiest thing through this whole process. When I frst learned of what my girlfriend was diagnosed with, I immediately fgured she would end up with an ostomy, based on my father. In the early stages of the disease, there are both good and bad days. Sometimes you don’t even realize there is a disease quietly lurking inside your loved one. You may be 46

able to go out and have a great dinner, avoid certain foods and drinks, and never see a symptom pop up whatsoever. You could, however, be driven to a TV night, constantly asking what you can do to help, only to realize shutting up will help just fne. I must admit, the early and easy days seem so far away to me. In all honesty, the “good days” were few and far between. What I remember most is watching my girlfriend deteriorate right in front of my eyes. The hardest thing is watching the disease killing her from the inside and not being able to do one thing to help, at all. We found ourselves in a different situation than most. While we both live in the same city, we were not yet living together. There was really not a day that went by where I would not see her, we essentially lived together. However, her health got so bad, so quickly, that she ended up having to go back home with her parents (two hours north). I have a full-time job in Columbus, which meant I only had time to see her on the weekends. During that time, I was also working part-time as a bartender for some side money. In hindsight, I should have quit that job right when she had to go home due to her health so that I could be with her every weekend. A part of me thinks, now, that I was trying to distract myself with work to keep my mind off of how completely powerless I was in her treatment. That was completely selfsh behavior on my part. The only thing I can think of at this time, is that it was a very poor way of coping with the situation. During her worst, I would see her after possibly weeks had gone by. I remember vividly, to this day, the day that I came home after two or three weeks without seeing her. Our communication was rare. Unbeknownst to me, she was so physically ill she could barely fnd the strength to pick up a phone to send a text message. I was ignorant to any of this information, due to my selfsh ways. Walking into her room, I could see a frail, skeleton of a person in the fetal position on the far end of the bed. My girlfriend was lying there, a shell of her former self. In no way had I thought the disease could physically beat someone into the state I saw her in. To this day, she loves having me rub her back to make her feel better; I immediately began to rub her back, based on habit. Every single rib and vertebrae was painfully visible throughout her entire back, from the base of her neck down to the swell of her back. She did not even have the strength to turn around and look at me in the eyes to acknowledge me seeing her after a lengthy time away. The only thing she could do with any energy she had was save it to make her 30-some odd trips to the bathroom a day. There was an emptiness in my stomach. A feeling came over me that I have never described to anyone in that time. For the frst time in my life, I was certain I was speaking to someone for one of the last times and all I could do was pretend it would be okay. I wholeheartedly thought she was going to lose the fght, the evidence was right there. There are a lot of emotions that you fght with being the healthy one in a relationship, where your loved one is wasting away before your eyes. In no way could I begin to try to describe every individual feeling that comes when you are experiencing this. Looking back on where we are now, the best way to describe that blur of time is, “helpless”. If I have to use one word, for the sake of boring you, I would say I felt completely helpless during that time. With everything in your heart you want to be there for your girlfriend, stick up for her, comfort her, tell her it will be okay, and make it okay. All of those words are 47

empty when you are fghting a disease like UC, you may mean them, but you can’t fulfll the promises. Of course, not everyone will experience the awful lows that I watched my girlfriend go through with UC, thank god. However, a lot of people may experience years and years of a middle-ground with no real hope of getting better. No matter where you are, or have been, it will get better. My girlfriend fnally won her battle with UC this past June, she got her colon taken out and began a series of surgeries that will ultimately result in her having a “J Pouch”. She is back to her crazy, funny, awesome self, and I couldn’t be happier. Instead of being insecure about this disease and being quiet about it, she actually started this magazine with her awesome friend she met trying to help people fghting the same fght. There are not words to describe just how truly proud I am of her, or how much I unconditionally love her, and there doesn’t really have to be. Seeing how bad things were, and where she is now in her life, nothing is going to stop her. I’m just lucky I get to be along for the ride. 48

DIET AND RECIPES by Jodie W. with Sweetly Simple LTD. WWW.SWEETLYSIMPLE.CO.UK @SWEETLY_SIMPLE Being diagnosed with Crohn’s or ulcerative colitis can mean many things, but one major change that everyone always has to keep in mind is diet. A company shares their expertise with delicious diet secrets and recipes that proves eating can still be enjoyable with IBD! Please, do try at home! Food is one of the most important aspects of our lives, and in people with IBD, this importance increases tenfold. Whilst some dieticians and nutritionists prescribe a diet high in lean animal protein and starchy foods, this doesn’t sit too well for me as all my free time is spent advocating a plant-based diet. Luckily, though, I have some tricks up my sleeve in the form of probiotics. Probiotics contain millions of live, active, ‘good’ bacteria and have been found to be particularly benefcial in aiding IBD amongst many other digestive conditions. Whilst they can be consumed in tablet form, I am a huge fan of probiotic functional foods. These can come in the form of miso, pickles, sauerkraut and tempeh. Miso has been consumed daily in The Far East for thousands of years, with the population shown to live extremely healthy and balanced lives. It is common for those in Japan to eat miso soup before every meal, including breakfast, which is said to aid digestion and prepare the body for food. Miso is made from fermented soybeans and comes in many different varieties like brown rice or barley. MISO SOUP 1 onion (fnely sliced) 1-2 carrots (matchsticks) 2 inch strip wakame 1-1 1/2 tbsp miso (barley or rice) sesame oil 2 or 3 spring onions (fnely sliced) water Rinse wakame and soak in water until soft, then slice into small pieces. Heat oil in pan and sauté onions until clear. Add carrots and fry for another 1-2 minutes. Add about 2 pints of water, bring to boil, cover and simmer. Add slice wakame and soaking water. 49