Companion Magazine 2015

THE NEW YEAR ISSUE

holiday

IN THE HOSPITAL

COOKING WITH TCJF

RECIPES FOR BETTER HEALTH

tips for coping

J-POUCH or OSTOMY? A GUIDE TO THE DECISION

TRUST YOUR GUT

inspiration stories of hope for the New Year

GUTLESS & GLAMOROUS a look into the organization

(even if you don’t have one) an ostomate’s journey to health through yoga

JANUARY 2015

V1, ISSUE 5

JANUARY 2015

NEW YEAR’S ISSUE

FEATURES + COVER STORIES:

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holidays in hospitals tips for surviving the holidays in a hospital

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LETTER FROM THE EDITOR

inspiration stories of hope & bravery with IBD

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18 how yoga helped a young TRUST YOUR GUT

ostomate find her health

COOKING WITH TCJF IN THE HOSPITAL 5 HOLIDAY 20 Sarah shares a few recipes Amber shares tips on surviving the

“most wonderful time of the year”

INSPIRATION 10 IBD several stories of hope &

bravery with IBD

from her latest book

29 FASHOSTOMY holiday style guide GUIDE: 30 GLAMOUR HOLIDAY TIPS

OR OSTOMY? 23 J-POUCH a guide to the huge decision

GUTLESS & GLAMOROUS SURGERY TO CHRISTMAS 15 Laura shares her journey from 26 a look into the organization J-pouch reversal to Christmas TO STADIUM 16 AHOSPITAL baseball player’s battle

with ulcerative colitis

VS. EMPATHY 27 SYMPATHY Rasheed’s battle with himself while

fighting a chronic illness

trust your gut how yoga helped a young ostomate

LETTER FROM THE EDITOR Happy Holidays!

I can’t believe it is already that time of year again. I often reflect back on this year and think of how much I have been through and how far I have come since our debut issue of Companion last December.

This time last year, I was recovering from my second surgery and getting ready to spend my first disease-free Christmas with my family in 2 years. I felt better than I had in a long time and was looking forward to being able to eat Christmas treats and catch up with my family members without the worry of pain or running to the bathroom.

Getting used to my j-pouch has been tough, as those of you who read my blog may know. I have finally started to feel better this past fall and have been working on getting to know my body again. There are tough days, but the good days are now outweighing the bad.

I’m back in the gym, going out with friends, going on dates and taking the time to appreciate how truly blessed I am to be able to function at a normal (for a j-poucher) level of living.

Last New-Years I remember counting down to 2014 and thinking, “I can’t wait for this year to start. This year I will finally be healthy, this year I will have my j-pouch, I don’t have to worry about surgeries, medications or hospital stays. I can move on with my life.”

What I didn’t realize is that even though the majority of those things are true, 2015 is what I was really looking forward too. 2015 will be the year that I can finally begin to look at my disease as a growing experience, instead of a crutch.

Even at the beginning of 2014, I still had to worry about recovering from yet another surgery and re-teaching myself a new lifestyle yet again. When I was sitting at a bar with my friends last New-Years, I still had my Ostomy, I was recovering from surgery, and I couldn’t dance or stay out late because of fatigue.

This year will be completely different.

This year I will be traveling with my family to Washington D.C. to see my favorite band, Third Eye Blind. Anyone who truly knows me is aware that I live and breathe for Third Eye Blind (and chocolate). It’s going to be so great to be able to get in the car for the road trip without the added anxiety of having to stop 50 times to go to a gross gas station bathroom, travel and have the energy to stand up and sing and dance to 3EB.

STAFF

BROOKE BOGDAN EDITOR - IN - CHIEF KRISTIN HARRIS GRAPHIC DESIGNER EDITOR CONTRIBUTOR GAYLYN HENDERSON FASHION EDITOR CONTRIBUTOR EMMA CHAPPLE BEAUTY & LIFESTYLE EDITOR CONTRIBUTOR RASHEED CLARK EDITOR CON

CONTRIBUTORS BROOKE B. RASHEED C. GAYLYN H. EMMA C. AMBER E. LAURA Q. STACEY B. SHARI H. JACQUELINE L. JACKLYN S. ANDREW C. KATIE S. SARAH C.

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To those who have always been healthy, singing and dancing at a concert is a no-brainer. To someone like me who have suffered with chronic illness and have overcome obstacles that are unimaginable, those activities are much appreciated.

Try to take a moment and reflect on the year that you, your family and your friends have had. Crohn’s and ulcerative colitis are normally joy-sucking, but try to remember that the battles you have fought with your disease have undoubtedly brought you closer to the people that you love the most. That journey has also brought you closer with yourself and hopefully has made you realize that even though you might be sick, recovering or struggling with emotional backlash, there is always something to be thankful for during the holiday season.

So, sing and dance your heart out like I will be. Sparkle and shine and put your best foot forward going into 2015.

Thank those around you for being there, your disease doesn’t just take a toll on you, it does on everyone around you as well. Some days are tough, but you have to be tougher.

Merry Christmas, Happy Hanukkah, etc. and Happy New Year!

Brooke A. Bogdan Editor-in-Chief

CONNECT WITH US! companionibd@gmail.com @companionibd facebook.com/companionibd

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HOLIDAYS IN THE HOSPITAL:

KEEPING YOUR SPIRIT ALIVE

By Amber E.

@COLITISNINJA

Tips and activities to keep your mind at peace and your heart full of Christmas spirit.

It is well known that people with Inflammatory Bowel Diseases spend a lot of time in the hospital. Many of us have spent countless holidays there as well. I spent last Christmas (2013) in and out of the hospital. It was the sickest I’d ever been with Ulcerative Colitis. My husband and I were unable to see our families for the holidays. This obviously made it harder.

Being confined to a hospital can sometimes feel more like a prison filled with cruel and unusual punishments (sleepless nights, uncomfortable beds, noisy IV’s, bursting veins, etc.), but you don’t have to become Scrooge. Just because you’re disease has robbed you of your Christmas, doesn’t mean you have to let it rob you of your joy. It also doesn’t make it better for anyone else if you attempt to rob others of their Christmas cheer. It is no one’s fault that you are in the hospital. Not yours, not your family’s, not your nurses or doctors... so please be kind. Your family probably feels just as helpless as you do, being in the hospital during a time when you’re supposed to be out traveling and enjoying yourself. Being ornery toward the nurses won’t help your cause. If you’re looking to make the most of your hospital stay, being kind to others (even when you’re frustrated and in a lot of pain) will go a long way!

Have a family member bring you a mini Christmas Tree with mini decorations.

Not an option? No problem! Decorate your IV pole. I’m sure the nurses can help you scrounge up some pencils and paper for you to draw your own decorations.

1) DECORATE A TREE:

Being in the hospital unable to do much of anything else will give you a chance to catch up on sending out Christmas cards. I have found that one of the best ways to put cheer and a sense of fulfillment in your own heart is to spread cheer and do kind things for 2) SEND OUT CHRISTMAS CARDS:

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others. Let them know that you care and that you’re thinking about them. I promise you, a little kindness goes a long way.

A Christmas Carol by Charles Dickens, How the Grinch Stole Christmas by Doctor Seuss, Little Women by Louisa May Alcott and The Lion, The Witch and the Wardrobe by C. S. Lewis are sure to warm your heart and put you in the Christmas Spirit. Not much of a reader?

Well, you’re in luck; all these have been made into movies!

3) READ A BOOK:

Most hospitals have cable so you’d be hard-pressed to find a station that isn’t having their own movie marathon (The 25 Days of Christmas on ABC Family). If you have a laptop, you could always have your family bring you your own Christmas movies from home. Frank Capra’s, It’s a Wonderful Life is sure to fill your heart with joy and remind you that despite your circumstances, you really do have a wonderful life.

4) HAVE A CHRISTMAS MOVIE MARATHON:

Who can stay blue when listening to Rockin’ Around the Christmas Tree, Have a Holly Jolly Christmas or Jingle Bell Rock? Sometimes, just listening to the good ole Christmas Carols helps... there’s something so comforting about Silent Night and What Child is This? Tip: While dancing, watch out for your IV wires.

5) PUT ON SOME CHRISTMAS TUNES:

If you’re brave and well enough, maybe you could attempt to spread the Christmas cheer by making your rounds to your fellow hospital-bound people. After all, a brave elf named Buddy once said, “The best way to spread Christmas cheer is singing loud for all to hear!”

7) GO CHRISTMAS CAROLING IN THE HOSPITAL:

Not only is this therapeutic, but it’s fun. You haven’t had any adventures? Of course you have! Take one of my adventures for example. My IV pole’s name was Ivan. Here is one of the things I observed and documented about him: “December 16, 2013 - This is Ivan, the IV holder. He has been my constant companion since I got here. He follows me everywhere I go... including the bathroom. For some reason ever since he came into my life, I’ve had more urges to tinkle... I suspect foul play, but I can’t prove anything. He is always in my way, slows me down and is extremely tiresome. Apparently he thinks we’re best friends or something. Personally, I just think he’s a creeper.”

8) “JOURNAL” YOUR ADVENTURES IN THE HOSPITAL:

If you’re able to eat solids, maybe you can have your mom bring you some of your favorite Christmas treats. I have found that there’s just about NOTHING Moms won’t do for their babies... especially if they are ill and in the hospital. Use this to your advantage.

9) CHRISTMAS COOKIES:

Invite your family to come see you. Hand them their Christmas gifts and ask them to bring yours. Being in the hospital shouldn’t rob you of the joy of exchanging gifts.

10) ORGANIZE A MINI FAMILY GET-TOGETHER:

If all else fails, you can always slap on a pair of antlers, put some jingle bells around your neck and insist that everyone call you Cupid.

11) BECOME A REINDEER:

The hospital is no place to be during the holidays. Unfortunately when you have Crohn’s Disease or Ulcerative Colitis, this becomes the norm--the daily routine. The only thing you can do is attempt to make the most of it. Seek out the little joys here and there.

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IBD INSPIRATION

Inspirational stories about moving forward in life while battling IBD.

A young woman fights for her life and for the life of her newborn. A student, mother and wife shares how ulcerative colitis changed her busy life forever.

By: Stacey B. @STACEY_BONTZ Four months ago, I woke up with no colon.

I was diagnosed with Ulcerative Colitis in 2007 at the age of 28. I was a newlywed, in graduate school, and had no insurance. I waited way too long to go to the doctor because of this. Plus, I’d never been sick before, and I think I was in denial. I finally started losing so much blood and started getting so sick that after about 4 months I knew I had to go. I had that one, initial bad flare, and after about 3 months of prednisone I was feeling better. I continued to take Lialda for 4 years as a maintenance medication and was in remission until the end of 2011.

In 2011, I got pregnant. I started to have minor symptoms at the end of this pregnancy.

However, the pregnancy itself was pretty wonderful and easy. I was put back on prednisone after I had my daughter and my symptoms seemed to go away once again. When my daughter was 11 months old, I was pregnant again. This is when things went downhill fast. Fifteen weeks into this second pregnancy, I started having serious signs of inflammation. Within a couple of weeks, I was hospitalized for the first time ever due to my disease. I was transferred to a bigger hospital that could administer cyclosporine as a last resort to try to save both me and the baby. I was getting both prednisone and cyclosporine intravenously for a month when I was finally able to go home. I acquired prednisone induced gestational diabetes and was giving myself insulin shots up to 10 times a day, along with around 38 pills a day. My body finally gave out. I was flown by helicopter to a hospital that had a NICU so I could deliver my daughter. She was born at 32 weeks and 3 days. She was in the NICU for 6 ½ weeks, but she is now a completely healthy 16 month old.

The turning point for me was my second pregnancy. I never fully recovered. After my second daughter’s birth, I stayed on prednisone and tried everything, including Remicade and Humira. While on Humira, I contracted C. Diff and within weeks, I was in the hospital again. I was septic and unresponsive for days. My husband and mom had me taken by ambulance to University of Madison where I had a total colectomy. This was in July of this year. The surgery went great, but it was a huge shock waking up and having no colon and an ostomy. There were no other options left for me, it had to be done, but I still had to let myself grieve. I had my moments, but ultimately having an ostomy made me feel better and saved my life.

I had my second surgery to create my J-pouch on October 14. I have had a lot of setbacks and random issues come up (like adrenal insufficiency due to being on prednisone for 3 years), when all I really want to do is put this all behind me. But, I have to keep going. I do get frustrated. I do get sad and angry, but I let those be fleeting thoughts. Dwelling on negative things and ruminating about my bad luck will not help me get healthy faster.

I cannot control any facet of this disease, and I think this is the hardest part for me. I have had to let go. I have had to realize that some things just don’t matter. This disease has made me appreciate small moments with my family. Every day, normal things like doing laundry or watching snow fall, make me happier than they did before this happened to me. It is a sense of peace and calmness I feel just being able to get up in the morning and do ‘normal’ things.

I remember riding home one time after being in the hospital for almost a full month, looking out the window, seeing people outside just walking around, and feeling jealous that those people just got to live normal lives. I have come to realize that everyone has their cross to bear. Everyone has something that they are dealing with. Whether it is something health related (physical, mental, and/or emotional), relationships, family, etc. Their something is big to them.

I know that being a counselor and having certain coping skills has helped me through this. It is easy to let your mind go to the bad places, but I know that is not somewhere I want to visit for very long. I know it will not do any good, and I know I have two little ones counting on me to be here for the long haul. This means taking care of myself both physically and mentally. It is so important for anyone with a chronic illness to see therapy as an option. A good cry can go a long way, but always stay focused on what matters. A good therapist can lead you in the right direction. I honestly try to look at the positives of the bad things that happen because of ulcerative colitis. I have to have another surgery; okay at least I’m alive. I feel like crap today, it could always be

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worse. I’m back in the hospital, it isn’t forever. Those are just things I tell myself. Its positive self-talk, and it might sound corny, but you do what you have to do in order to get through things and not fall into depression.

I have learned so many things through this nightmare that is ulcerative colitis. There are certain people that I lean on: my mom, my husband, my two sisters, and I could not have done this without them. I have learned to let them help me. I have learned to ask for help. People, who truly love you, really do want to be there for you. I have learned who my true friends are. I have learned to advocate for myself and let others do the same for me. I have learned how blessed I really am.

My advice for anyone who has IBD is to not let it define you. This happened to you, it is not who you are. Your mindset can truly get you through the hard times. Do not let this disease get the best of you. There are a lot of ups and downs, but it WILL get better. Lean on people, your faith, your hobbies, your children. Make other things more important than the disease. Read other people’s stories. Empower yourself.

Having a positive attitude and outlook is a choice. It’s a choice I make every day. I know I cannot control what happens to me, but I do know that I can control how I react to it. Optimism is contagious. This holiday, when you are with your family or at a party, and people see you enjoying life regardless of your diagnosis, they will see how strong you really are.

A woman shows us how she stays one step ahead of her battle with ulcerative colitis through exercise and positive thinking.

By: Shari H. @73weed My name is Shari and I have UC. After a lifetime of not knowing why I felt poorly, my UC reared its head and I was diagnosed in 2002 at the age of 48.

My doctor told me the most important thing to do was to educate myself.

This is my major advice to all of the newly diagnosed!

My doctor suggested I go to a yoga or a Pilates class. I chose tPilates and loved it. I began to feel stronger and it mentally helped me get thru bad days. I took it further and became certified in Pilates, Personal training and Zumba.

I am also a licensed hairdresser by trade and I own my shop. In the evenings I teach Pilates and I personal train 3 mornings for a gym close by. By adding exercise, I began to feel better!

At the age of 52, I ran my first 5k with my daughter in Chicago. From there I trained for half marathons and have completed 3 and raised money for the CCFA (one race I ran in Las Vegas was with team challenge).

This July, at the age of 59, I biked across Indiana with my daughter in an event called Rain, which stands for ride across Indiana. The race took us 12 hours and we rode 161 miles.

Physical activity helps keep me in perspective I feel that my UC has been a gift to me. God chooses those who can handle the sadness we have that no one else sees. He chooses those of us who can go forth and speak, educate, fundraise for research, and advocacy.

While most know that IBD can go into remission and then tomorrow we may have to fight yet again, we also must know that because of our silent disease, we are strong, we are fighters and we should live life to the fullest.

I do not let UC rule me. Nor do I allow pity, I simply use it as a gift; one that has changed my pace and road in life. It has guided me to a much better place and to become a stronger woman. I am the face of UC. Can you see it in my pictures?

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A college and nursing student discusses how ulcerative colitis paused her dreams, but didn’t stop them.

By: Jacqueline L. @jklopezz My name is Jacqueline Lopez. I am a 20 year old, college junior at North Park University in Chicago, Illinois who is about to begin nursing school in the fall. I might sound and look like a typical college student, but what many don’t know from the outside is that I am currently living with a temporary ileostomy.

I was diagnosed with Ulcerative Colitis about 2 years ago, when I was attending the University of Iowa as a freshman. Out of nowhere, I began having terrible IBD symptoms (diarrhea, severe blood, and weight loss) that went on for months and I had no idea what to do. I was embarrassed to talk to my close friends and roommate about it because it was something I had never heard of and it’s not an easy topic to discuss. After a few months of experiencing these symptoms, I finally got a colonoscopy, which is when it was confirmed that I had a life long autoimmune disease, Ulcerative Colitis.

My doctors immediately started me on many different medications to hopefully relieve my symptoms and pain. Unfortunately, my body didn’t respond very well to any type of drug that I tried (Remicade, Imuran, Azathioprine, etc.) and after losing about 25 pounds I was admitted to the hospital for the first time. At this time I spent about 30 miserable days in the hospital hoping and praying that some medicine would begin to work its magic on me. I finally was able to leave after taking large amounts of IV steroids and an immunosuppressant called Cyclosporine.

Within the last year and a half, I still hadn’t been put into remission since I was diagnosed with my disease. This past July, I was admitted into the hospital for the third time due to my disease and didn’t have a choice but to get a total abdominal colectomy. I knew by getting this surgery that meant I had to face life as a college student with an ileostomy.

If you would have asked me before the surgery how I felt about getting it, I would have said a lot of negative things about how people will make fun of me and how I didn’t want to tell anyone that I had this condition.

All I could think about is how I would be able to tell people about this, especially while trying to live a normal college life.

After waking up from my first surgery, I had a whole new mindset about how I was going to face this bump in the road and decided that I wanted to make my condition as public as I could. I explained to all of my friends and family about my disease and I still constantly post on social media to try to show people that this disease is more common than many people would expect.

Even though living with an ostomy in college was one of my biggest fears, I am facing it head on and it isn’t that bad. Since I’ve started my junior year of college, everything has been going very well with balancing schoolwork and taking care of my ostomy.

Unlike before, I can actually attend class without having to worry about running to the bathroom. My grades have been improving because I no longer feel sick anymore and I can actually focus on learning rather feeling sick and always wondering in the back of my mind if I would make it to the restroom.

My disease has made me very passionate about going through nursing school in hopes to be an IBD nurse so I can help others who suffer and go through the same daily struggles as I do. The days that I don’t want to study for a test or go to class, I always end up thinking about how all of my hard work will pay off by being able to provide others with the compassion and care that the nursing staff gave me when I was a patient.

One of the biggest pieces of advice that I can give to someone who has an inflammatory bowel disease in college is to find a friend or a group of friends that you trust and tell them everything about your disease. By being able to confide in someone and share your experiences/concerns with them, it allows you to not have to go down this path alone. The first people I told about my ileostomy and surgery were my two roommates who were very understanding and willing to do anything to help me along the way.

I remind myself that getting this surgery potentially saved my life and has made me an all around better person. Even if there are those people who say negative things, I learned that is was best to just brush them off and remind myself that my quality of life

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has improved tremendously. My second surgery is coming up in December followed by my third in March. After that, I will be proud to say that I faced my biggest fear of being a 20-year-old girl who went through everyday college experiences with an ileostomy.

“A life not fought for would be so much easier, but so much less appreciated”

A young woman & college student opens up about how UC & harsh medications changed her perspective of not only herself, but of her life.

By: Jacklyn S. @jacklynmarie I stood in the bathroom looking in the mirror wondering what was happening right in front of my eyes. I was so confused that I couldn’t see what was wrong with me. But I knew that there was something that wasn’t right.

In that moment, I pushed the thought out of my mind and opened the door. Standing before me was my grandmother and the face of concern.

You know, the one with the smug look and the lifted eyebrow and she doesn’t even have to say anything, but you know exactly what she was thinking. It is a face that you can’t say “I’m fine” to. In turn, I told her everything that I was hiding for the past two months.

That night she called my parents who were away on a mini vacation and the next day I was admitted to the hospital.

Five years ago, I was diagnosed with ulcerative colitis. At the time I had myself convinced that the pain was normal and the bleeding was just the side effect of being stressed. I was a senior in high school and applying to colleges all while being active in school and a dancer. I played everything off like it was no big deal but deep down I knew that laying on the bathroom floor in pain and the amount of blood I would find in the toilet was a serious issue.

A lot of things have changed over the past five years, since that dreadful hospital visit. Even though most would view them as negative situations, I have learned from my family to look at everything in a positive light.

There were days where I couldn’t walk, but those were the days where I did the most homework or worked on projects I had put off. The days where I would lay on the floor in pain were the days filled with family board games. Living with this disease I have learned to take the good with the bad.

Thankfully, after all of the stress, I was accepted into college and hoped for the best. Starting a new journey, I had thought that I would have a new beginning. But I was so unbelievably wrong. To be completely honest, I almost failed out of college my first semester. I received a 1.3 GPA and needed a minimal of 1.5 to continue. Thankfully, I was granted permission to stay due to my circumstances.

After many countless and sleepless nights thanks to Prednisone, the lack of understanding from professors, my boyfriend and roommate carrying me across campus when I just couldn’t walk anymore and the hurtful misunderstandings from ‘friends’, I graduated from college in 4 years and made Dean’s list multiple times. I don’t mean to say this to brag but, I am pretty darn proud of myself!

Now I mentioned the countless, sleepless nights due to Prednisone. I will admit that it helped when I was so sick, but it was one of the scariest times in my life. I was on and off the medication many times but the longest duration was for 7 months. I had gained 50lbs and my face was so swollen that people that I had went to school with, had no idea who I was. Not only did it damage self-esteem that I had but it was quite depressing. This was very challenging for me at the time. I was never one of those overly confident people but I did my best to be comfortable in my own skin. After taking Prednisone for so long and seeing the changes my body went through, life was difficult to deal with. I didn’t see myself as others did and only saw my flaws. This, on top of being so sick led me down a very scary road. Depression set in and so did my anxiety attacks. I also kept this all a secret, or so I thought. I knew my mood had changed, my thought process did as well. Though I didn’t realize how noticeable it was to others. I didn’t know until years after that my roommate would text my mom at night to tell her that I was ok. It did hit me though when my mom asked me a very serious question, if I had ever thought about harming myself. I knew then that I needed to change my way of life and find medications that would work in a more positive way.

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I have been on Remicade for two years now and could not be more thankful for the improvement as well as the support I have received from nurses and other patients. Though I still battle with the depression and anxiety, I have sought help with the support from my IBD support group.

My support group is full of some of the most inspiring and supportive people I could ever be blessed with. They are actually why I am writing this right now! They have helped me so much through the past five years and can only hope those suffering from these diseases can do as well. Having people who understand what you are going through, and will not be disgusted or offended by what your body is going through, will give you a sense of comfort. Social media is filled with them!

My advice also consists of knowing your body. I know there has been many times where I have simply done just too much and my body is completely wiped out. Know when you can push the limits and sleep in the next day to rest up. Just because all you are out with all of your friends and they are eating food that looks absolutely delicious and you know that you will regret it, just don’t eat it, you will thank yourself later. Learn your self-control. Also learn that it is ok to say no. I know that I am one to always try my best to please everyone, but if you don’t take care of yourself then you will never be able to help others. You know when enough is enough both mentally and physically.

My last piece of advice is something that got me through the hard times. A quote that I had plastered over my room, my mirrors and social media. So I will leave you with this,

“Remember, you were given this life because you are strong enough to live it.”

You can have a life despite your diagnosis! Below, Jacklyn shares her hobbies and passions that help keep her fight with UC a winning battle: My hobbies include: I have danced for the past 18 years.

I enjoy video and audio editing (I graduated with my Bachelors in Journalism and Mass Communications with a dual specialization in broadcasting and public relations.)

I compete within the Miss America system (I have competed at the state level 3 times. I have also competed while very sick.)

I actively promote my platform while competing, “But you don’t look sick?” : Advocating for Invisible Disabilities I was an on-air DJ at Edinboro University I was also the co-captain of our university dance team. (My co-captain had Crohns!)

About me: I am 22 years old A recent graduate from Edinboro University of Pennsylvania The oldest of three daughters, all 7 years apart I am one of those crazy dog ladies who spoils her dog rotten.

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FROM SURGERY TO CHRISTMAS:

6 WEEKS WITH A J-POUCH By: Laura @UC_GIRL2008 If someone had said to me back in 2008 that my newly diagnosed ulcerative colitis would one day lead to the removal of my entire colon, I have no idea what my reaction would have been. At the time, my focus was on learning more about my diagnosis and getting into remission as quickly as possible.

Six years later and I have now undergone three surgeries, the last of which was only six weeks ago. On November 5, 2014, having lived without a colon and with an ileostomy for a year, I had my takedown surgery. My ileostomy was reversed and so began life with a j-pouch (or ileo-anal pouch).

So what have the first six weeks with a j-pouch been like?

WEEK 1: IN THE HOSPITAL My pouch started working (at full force!) about 36 hours after surgery, and for the first few days it was a bit like having ulcerative colitis all over again. I was rushing to the toilet every two hours both day and night, and because of my small appetite, the much read about “butt burn” was now a reality. Thankfully, all of this was normal for new j-poucher, and after six days I left hospital. I went home with just a few medications: Painkillers, Loperamide (to slow digestion), and a good barrier cream for butt burn protection.

WEEKS 2 & 3: HOME COMFORTS & POUCH TRAINING By the time I left hospital my appetite had improved greatly and I had started the process of “pouch training.” The idea is to train the new j-pouch to hold in its contents for as long as possible, which means fewer trips to the toilet. Being at home made this much easier and allowed me to completely focus on adjusting to my new normal.

WEEKS 4 & 5: VENTURING OUT After a couple of weeks that involved lots of resting and training, I started to venture out of the house more. Although the process was slow-going, my j-pouch’s functioning was continuing to improve, and to my delight, I was now sleeping through the night with no need to get up and use the toilet. Five weeks after surgery I met with my surgeon for my post-op follow up appointment and he was very pleased with my progress. I’ve been able to test out my pouch and build confidence in its ability by having dinner out with friends, going to the cinema, Christmas shopping, and taking a trip to the theatre.

WEEK 6: ALMOST CHRISTMAS It is now six weeks since surgery and a week until Christmas (at the time of writing) and life with a j-pouch is so far, so good. I have mostly stuck to a low-residue diet that consists largely of foods that are easy to digest, and good for bulking up my stool. I take Loperamide once a day, before bed, and my pouch training is an ongoing process. It can take up to two years for a j-pouch to reach its optimal performance and even though I still go to the toilet more than a person with a properly functioning colon, I go far less than I did during my flare-ups of ulcerative colitis. Hopefully those days are now behind me for good.

Earlier in the year I had said to my surgeon that I would like to complete my last of three surgeries with enough recovery time to enjoy Christmas and to start the new year feeling healthy and strong enough to get back to work full-time. I am happy to say that it looks like I will achieve those goals. Two years of ongoing ulcerative colitis flares, followed by a year of surgeries and recoveries, has meant that the last three years have been extremely hard going at times.

Did I want to go through those multiple surgeries? No. Was I nervous about them? Yes. Do I regret them now? Absolutely not!

As the new year fast approaches, I hope 2015 will mark the start of an ongoing period of good health as I get back to living life to the fullest!

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ANDREW’S STORY:

FROM THE HOSPITAL TO THE STADIUM

By Andrew Cain My name is Andrew Cain. I am a 24 year old male from North Carolina. I grew up living a very healthy life, but at the end of my senior year of high school I was diagnosed with ulcerative colitis. At the time, I knew nothing of the disease and didn’t think it was very serious because I didn’t have any bad symptoms, just some blood in my stools. I was prescribed Lialda, 4 pills a day, and it managed the disease very well. I went to college to play baseball at the University of North Carolina at Wilmington. Minus one flare up a year later every summer, I never had any problems with the disease. It did not affect my very active lifestyle. After a successful junior season, a lifelong dream of mine was fulfilled and I was selected in the 12 round of the MLB draft by the Milwaukee Brewers. I declined the offer to return to school for my senior season. After another successful season and regional appearance, I was drafted again in the MLB draft, this time by the San Francisco Giants. I accepted the offer and began playing professional baseball.

The lifestyle of a professional baseball player in the minor leagues is a very tough life, playing about 140 games from April 1st to September 1st in the hottest time of the year. My first full season was in Augusta, Georgia, which seemed to the hottest place I’ve ever been, especially with the humidity. Being on the road so much, the nutrition is very poor. Nutrition had never been a problem for me, but one day it all seemed to catch up with me. A combination of stress (from playing almost 40 games in the month of August) and eating terrible food like waffle house and Denny’s after late night games seemed to be the final blow.

I woke up one morning with a terrible pain in my side and had blood in my stools. Diagnosed with a flare up, I was prescribed 20 mg of prednisone by a general doctor. At the time, I had no idea the correct dosage I needed, I just knew what I needed. I took it for 2 weeks and got drastically worse. It was a very tough time for me because just a few weeks before, we had clinched a spot in the playoffs. I knew I was a vital part of the team and needed to be playing. I kept trying to push through it but the pain got too bad. I woke up at 2am to use the bathroom and was up every 30 minutes after that. It’s not an easy thing to go through because on the outside looking in I looked fine. Anyone who ever experiences it knows; you will never understand the pains unless you go through it. The day before we were supposed to leave for playoffs, my coaches and I decided it was best for me to go home to see my GI doctor.

After a full day of driving home, my symptoms became worse. I couldn’t eat or drink anything because I would throw it back up.

As miserable as I was at the time, I really didn’t think this flare up was as serious as it turned out to be. For a few days, I ate as

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bland as possible in an attempt to control my symptoms with my diet. After nothing worked, I went to see my doctor. On my good days, I am 6’6 230 lbs. I walked into my doctors visit, stepped on the scale and it read 207 lbs. Realizing I lost over 20 lbs in a 3 week span, I began to tear up and realize this was very serious. I was admitted to the hospital immediately.

I was put on a high dose of prednisone, which did nothing for me. I was also given IV fluids because of severe dehydration, as well as pain medication. The first medication we tried was Cymzia. After doubling the dose and seeing no improvement, we then tried remicade. I was given a double dose of that as well to try to get into remission.

I was in the hospital for 2 weeks, and was on a clear liquid diet and TPN. I finally began improving slowly. I was scheduled to be released the very next morning but, sure enough, I took a turn for the worse that night.

No medication could control this flare up, so I was forced to make the toughest decision of my life: surgery.

The toughest part for me was accepting that something was wrong that would never be right. I had to spend 2 more weeks at the UNC hospital regaining some strength and preparing for the surgery to remove my entire large intestine. All I could think about was never being able to play baseball again and the fact that I would probably be very limited in my activity the rest of my life.

For a few weeks I was in denial. I kept thinking about how far I had gotten in my baseball career and how it was all ending right then and there because of this terrible disease. I prayed continuously about it and had so many people praying for me. I finally was able to accept what was happening. I knew it would be life changing and would never be the same again, but I was going to fight and beat this disease. I told myself that everything happens for a reason and one of these days it will be discovered.

I went into the surgery with an open positive mind, relieved that all of this pain and misery would come to an end. The surgery was a success other than a few complications: a small bowel obstruction and abscess, ironically the size of a baseball.

At first I felt awkward going into public places with my ostomy, but after a few weeks of having it, I had no shame whatsoever. It was a part of life, fortunately only temporary, but I would not let it hold me back. I lived my life like a normal person for the few months I had it. Instead of dreading it, I was grateful it was helping “cure” my illness.

The second surgery was also a success, and here I am today. Seven months ago I had that final (second) surgery. I have since gained back all 80 lbs I lost. I was 149 lbs in December 2013; I am now up to about 230 lbs. Most of that weight is muscle I gained back from focusing on weight lifting.

I have no restraints and refuse to let anything hold me back now. One doctor told me I would probably not be able to play baseball again. I practice baseball every day at a high intensity to get ready for spring training 2015. Some days I play golf, other days I play basketball. I go to the beach just about every day.

The most important lesson I learned is to make the most of every day and to not take anything for granted. I wake up every morning and smile knowing I have a second chance at life and am healthy again. Although my plumbing system is different than everyone else’s, I refuse to let it hold me back. I find that this disease is very common and a lot of people have to have the jpouch procedure done. It is nothing to be ashamed of. Instead, be thankful there is a cure.

I share my story in hopes that people will open up and reach out to others. It makes the entire process much easier when you can talk to people about what is going on and express your feelings. The most important thing to remember is that everything happens for a reason!

STARTING AT UPPER LEFT PICTURE, MOVING COUNTER-CLOCKWISE: Andrew in spring training with the Giants, 2013; After the team clinched 1st place in the playoff berth in August 2013, Andrew and his team enjoyed a celebratory champagne shower; Andrew taking his 1st walk post-surgery in December of 2013 (pictured with his former UNCW college coach [left], his mother [back] and nurse [right]); In October 2013, Andrew weighed in at 149 lbs; On July 4th, Seven months after his final surgery, Andrew weighed in at a healthy 230 lbs.

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TRUST EVENYOUR GUT IF YOU DON’T HAVE ONE

By Katie S. INSTAGRAM: @STOMIYOGI

How yoga helped a young woman heal herself and love being an ostomate.

Your body knows how to heal itself; it wants to feel good.

Plagued with chronic digestive issues since birth and enduring everything from chronic idiopathic constipation, Irritable Bowel Syndrome, slow-transit constipation, colonic dysmotility, gastroparesis, and gastric ulcers, it wasn’t until I reached the age of nineteen that I was officially diagnosed with Pelvic Floor Dysfunction (PFD) and gastroparesis.

PFD is a very misunderstood condition, and the fact that every individual affected by it suffers different symptoms adds to the complications involved with diagnosing and treating this debilitating and traumatizing condition. Some experience sexual complications while others endure digestive symptoms.

I do not intend to discount the treatments offered today for PFD as many have benefited from them, especially those who acquired pelvic floor issues later in life due to an injury or other digestive or reproductive issues. Most likely because my personal experience with PFD is very severe and different from that of others, it took over nineteen years of misdiagnoses and unhelpful treatments, physical turmoil from the condition itself and various medications, emotional roller coasters of confusion, frustration, and depression, inability to work, socialize and have a ‘normal’ life before I found the one surgeon who listened to my long story and immediately understood that I was the rare unicorn with this condition who needed surgical intervention.

Despite the missed opportunities and prolonged pain and suffering, it was my yoga practice that helped me survive until the point of my ostomy surgeries, that helped me make sense of it all and give meaning to low points of my journey.

When my chronic constipation started causing severe fecal impactions in high school, some so large that they dilated my colon to the point radiologists and gastroenterologists were left shocked, I had my first colonoscopy and upper endoscopy at age fifteen and was told everything looked healthy and that I just needed to add fiber to my diet.

When I was finally diagnosed with PFD and during my physical therapy treatments, I was still maintaining my running and gym routines and was reluctant to alter my diet. I noticed during my physical therapy how similar the stretches prescribed were to yoga poses, so my commitment to a regular practice became more of a staple in my life.

Becoming more in touch with my body through yoga helped me realize that, as crazy as it may sound, I felt better when I stayed away from high fiber foods and raw produce. Still, as I was finding no constipation relief, having to rely more and more on strong depleting laxatives, and making no progress with physical therapy, I sought help at Mayo Clinic in Rochester, MN, only to find their PFD physical therapy program to be extremely disappointing.

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Physical therapists and doctors were giving up on me left and right, I had to withdraw from college three times, did not finish my undergraduate degree until the age of twenty-five despite being incredibly intelligent and intellectually capable of so much more than my body could handle.

I was still plagued daily with pain and social isolation, unable to work, and had to turn down every opportunity to spend time with family and the few friends I had left as many abandoned me over the years due to rumors and the inability to understand what I was enduring.

During the years I tried healing myself through alternative therapies when conventional medicine seemed to have given up on me, it was my yoga practice that kept me going. My life was unlivable, and I knew I had to try one last time to have the surgery I had begged for nearly ten years earlier.

Luckily, Dr. Orkin had recently been appointed the Chief of Colorectal Surgery at University Surgeons of Rush University Medical Center, and my gastroenterologist Dr. Bruninga agreed an ileostomy was a viable option and referred me to the man who would become my savior.

The first surgery was a success, and my stoma, Marvin, was born! With some medication and dietary adjustments, I was finally able to eat comfortably for the first time in my life! I was actually able to enjoy Thanksgiving dinner with family I had not seen in years due to my illness the day after being released from the hospital! I learned that 100% grape juice is the key to preventing blockages, as is staying hydrated.

I love hearing Marvin ‘talk’ and even opt for transparent pouches to make sure he’s happy and healthy. Problems ensued when my colon that was still inside me continued to produce gas and mucus that my pelvis needed to expel but couldn’t. Dr. Orkin understood the troubles I was still having with my colon and agreed to perform a total proctocolectomy (TPC) just a few months after my ileostomy surgery.

I still have plenty of days when my appetite is irregular and the dysmotility in my stomach and small intestine create blockages, but I know that deep breathing, meditation, twisting postures, backbends, and inversions keep Marvin happy. I now have an amazing job I love, helping others live healthy lifestyles and hope to inspire others through my yoga practice, showing them that, even with an ostomy or any other supposed limitation, that anything is possible.

Most ostomates are reluctant to have their surgeries, need their stomas for different reasons than mine, and feel that their life may be over once they end up with the dreaded ‘bag.’

I’m hoping my story shows that ostomies aren’t the end of the world but actually a wonderful new beginning, full of more opportunities than ever before. Yoga helped me live through so many years of pain and suffering, and now it’s helping me thrive with an ostomy and appreciate the fact that Marvin and I are together forever.

Katie Schroeder is a Yoga Alliance 200-Hour Registered Yoga Teacher and Whole Body Team Member at Whole Foods Market, and she’s doing it all with an ileostomy! She is now thriving as an island girl in Hilton Head Island, SC, loving her job, and her new life with her stoma Marvin.

Dubbed the “handstand queen” on Instagram as @stomiyogi, she has used her yoga practice to recover and regain strength after her surgeries as it had helped her cope with her chronic condition prior to finally getting the necessary surgical resolution.

Although she was afraid that she’d have to give up yoga entirely due to having an ostomy, she hopes to inspire others that the sky is the limit – ostomy or not – as long as you trust, believe, and love yourself and have the confidence to put it all into action. Please refer to her @stomiyogi Instagram account for updates on her upcoming website and blog with helpful tips for ostomates and those interested in yoga.

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COOKING WITH

CROHN’S JOURNEY FOUNDATION Hey everyone, Sarah here from The Crohn’s Journey Foundation and my new baby, Sarah’s Paleo Kitchen. I wanted to share with you some holiday appetizers and treats that are gut healing, easy on digestion and nutrient dense! I hope you enjoy them. For more recipes please visit my kitchen and for love and support for your IBD soul join my IBD Family.

RECIPE 1: BREAKFAST OR DESSERT Going Banana’s for Blueberries (SCD, GAPS, PALEO, AIP) 1/4 cup frozen organic blueberries 1/3 cup probiotic yogurt (I used homemade coconut yogurt) 1 1/2 frozen organic bananas 2 teaspoons grass-fed collegen (*remove for vegan) 1 teaspoon cod liver oil (*substitute with flax seed oil for vegan) My Favorite Gelatin and Fish Oil Place all ingredients in a blender (i used my vitamix) and blend on low. You will have to push down the frozen fruit a couple of times as it blends, until it becomes a frozen yogurt consistency.

RECIPE 2: APPETIZER Butter Nut Squash Hashbrowns aka Latka Wanna Be’s (AIP, PALEO) 1 cup shredded butternut squash (peeled and deseeded) 1 tablespoon arrowroot 1 tablespoon ghee salt to taste (I made this recipe so that you can double, triple or quadruple the ingredients, depending how much your butternut squash gives you).

Use a food processor’s shred feature to shred your butternut squash. Place the shredded butternut squash on a paper towel and press with another paper towel to squeeze out the excess water.

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Mix together the shredded butternut squash and the arrowroot.

Place ghee/coconut oil in a large frying pan over medium heat.

Once melted, add ¼ cup of the hash mixture into the pan, making 4 pancakes.

Press down using the back of your spatula once and leave it alone to cook for 3 minutes.

Flip after 2.5 - 3 minutes, the bottom should be light brown/crispy. Cook more if you want it crispier or check earlier if you prefer it softer.

Continue to cook for an additional 1.5-2 minutes, depending on how crispy you want it.

Salt to taste and enjoy with some avocado, eggs, bacon or just on their own!

TIP: Because I like my hash very crispy I cooked it for approximately 3 minutes on the first side and 2-2.5 minutes on the other. (gotta love a timer).

TIP: I noticed that one side of my pan seemed to get hotter than the other so I rotated my pan when I flipped the hash to insure even browning.

FREEZE: If you cooked too many, which I always do, you can place them in a freezer bag, with parchment paper between each hash. Reheat on a skillet over medium heat. Make sure to spray it with coconut oil to make sure it doesn’t stick.

You can make them even smaller and use as a base for a fun appetizer. Check out my “BKA Bites = Bacon, Kale, Avocado”.

RECIPE 3: Healing Bone Broth (AIP, Paleo, Whole 30, SCD, GAPS)t 2.5 pounds organic, grass fed bone broth 2 tablespoons apple cider vinegar 1 gallon filtered water 1 organic onion 2 organic carrots 2 stalks organic celery stalks 2 dry bay leaves 1 teaspoon salt - more later to taste 1/2 teaspoon pepper - more later to taste PREHEAT OVEN TO 350 DEGREES Place the bones on a baking tray and bake for 30 minutes.

Put the baked bones in a deep sauce pot and top with water and vinegar, let it sit for 30 minutes.

Add salt, pepper, bay leaf and onion into the pot and bring it to a boil. Once at a boil, reduce to a low simmer and cover for 20 hours.

Taste to see if you would like more salt and/or pepper, add the carrots and celery and simmer for an additional 4 hours.

Strain the broth and make sure to place all the bone marrow and connective tissue back into the broth.

Store in a glass jar.

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TIP: Make sure to let the broth cool before placing it in the fridge. The broth should last about 4 days in the fridge. It can last up to a year in the freezer.

TIP: If you are not feeling like broth, you can use it to create a hearty soup or slow cooker dish, a great way to get the nutrients without getting bored.

TIP: You can cook the bone broth for up to 48 hours but I have found it will become gelatin after 24 hours of cooking. That is your goal, that once the broth is placed in the fridge it will look like “jello.”

For more recipes and advice from Sarah, please visit her website at www.sarahspaleokitchen.com/books/ and purchase Living with Crohn’s & Colitis Cookbook: Nutritional Guidance, Meal Plans, and Over 100 Recipes for Improved Health and Wellness.

For the millions of people afflicted with inflammatory bowel disease (IBD), including Crohn’s and colitis, it can be a daily struggle to find nutritious meals that won’t aggravate symptoms or cause a flare-up. The Living with Crohn’s & Colitis Cookbook is your essential nutrition guide with over 100 recipes and meal plans expertly designed to improve daily functioning and help relieve symptoms of Crohn’s and colitis.

The Living with Crohn’s & Colitis Cookbook contains everything you need to plan your meals, balance your diet, and manage your symptoms, including: • A guide to keeping a food journal • Sample meal plans • Tips for shopping for an IBD diet • Gentle and nutritious recipes to help soothe flare-ups …and much more!

The Living with Crohn’s & Colitis Cookbook features over 100 recipes, including Zucchini Buckwheat Banana Bread, Homemade Almond Milk, Dr. Lang’s Healing Soup, Garlic-Herbed Scallops, Coconut Curry Chicken over Brown Rice, Mushroom Risotto with Cashews and Parmesan, Crabapple Walnut Cake, and many more. The book also features Paleo recipes.

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J-POUCH OR OSTOMY? By: Brooke Bogdan EDITOR-IN-CHIEF @BRKLYNBOUNCER

Many patients struggle with the choice between having a permanent Ostomy and a j-pouch. For some, one or the other is not an option at all. Let us share some facts and opinions from those who have either made the choice or had the choice made for them.

For me, having an ostomy was never a choice that I had to make. My surgeon made it for me. I was fortunate enough to be able to also have the ability to have a j-pouch built, which I have now.

There are many patients that do not have the ability to live life with a j-pouch and struggle daily with the symptoms of their inflammatory bowel disease. I’ve also heard of a few people who have been renastomosed and then chosen to go back to having an ostomy.

I won’t lie, the first 6-7 months with my pouch was rough. There were days when I would text friends or cry to family that having an ostomy was so much easier than having to learn to live a life with a j-pouch. My surgeon’s nurse was correct in telling me that when I was recovering from my final surgery and learning how to lead a j-pouch lifestyle, it would feel like I was dealing with ulcerative colitis all over again.

My bathroom trips were still frequent and it was painful at times to go to the bathroom. I was up what seemed like a million times at night again and the nauseous feeling that I would have constantly with colitis was back as well.

My family and I did our best to manage my symptoms, even worrying that I had developed pouchitis. After a scope from a specialist at the Cleveland Clinic in Clevleland, Ohio, we learned that I did not have pouchitis after all, but instead a severe case of cuffitis.

Cuffitis is a condition that affects the lining of your rectum that surgeons leave in place in order to give the patient the ability to feel the, “urge,” to use the restroom. Without that lining in my rectum, I would have accidents and would not be able to control my functionality. Apparently, there is still active ulcerative colitis in the 2 inches they left in my rectum, making me feel sick again and causing me to have to watch my diet, take medications and make sure that I’m doing everything in my power to keep the flare in my rectum at bay.

For some, that sounds awful. Who would want to go through all of those surgeries, wear an ostomy for an extended period of time to only have it removed and still have issues with colitis?

Isn’t surgery supposed to take away the symptoms of ulcerative colitis?

Sure it is, but there are still possibilities that some things could go wrong. Those of us who have had any kind of surgery are always at risk for blockages or obstructions and are at a higher risk

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for dysplasia. Those among many others are just the kind of things that we are going to have to deal with for the rest of our lives, which is why it is important to take such good care of your body.

The other important thought that comes to my mind is, how many people are struggling with the back and forth of having to learn how to live with a j-pouch, versus sticking to an ostomy?

“Since my second surgery constructing my j-pouch, I have had a variety of problems and my last surgery was delayed and delayed. I had some medicine complications/interactions and also found out that after years of steroid use because of ulcerative colitis, my endocrine glands were no longer working, I am currently on a low dose of steroid, possibly for life,” writes one patient on an ostomy online board.

“The surgeon is giving me the option of connecting my j-pouch or just going with a permanent ileostomy. I’m 50/50 on whether the j-pouch will be successful. I have had a case of pouchitis and my ostomy output is constantly high.”

The question remains as to whether patients such as this should spend the time and energy on having the final surgery. To some, it may seem like the best choice to try. To others, it may seem like a better idea not to even risk it.

For others, the lifestyle of having a j-pouch may not be ideal either. Having to rely on the bathroom again may not be as urgent, but is still relevant when dealing with a j-pouch. Eating only means having to find a bathroom in a certain amount of time and eating or doing the wrong thing could result in nausea, increased output or other complications.

“With either a j-pouch or an ileostomy, bowel movement frequency is going to be more than for someone with a normal digestive system. However, I personally felt that dealing with frequency would be easier on a climb with an ostomy appliance than a j-pouch,” writes Ostomy Outdoors finder, Heidi S. The kind of lifestyle you lead definitely should be taken into consideration when deciding what you’re going to be dealing with when you go to the bathroom is.

Another factor is the severity or kind of inflammatory bowel disease that you may be dealing with.

Since Crohn’s disease is known to affect more than just your colon, having a healthy j-pouch may not be an option. Ulcerative colitis can be known to severely destroy the lining of your rectum as well, leaving the patient with no choice but to have a permanent ostomy.

About 23 to 45 percent of people with ulcerative colitis and up to 75 percent of people with Crohn’s disease will eventually require surgery. Only your doctor and other members of your health care team can determine whether surgery is a good option for you or not.

For my lifestyle and the severity of my disease, a 3 step surgery process with a j-pouch in the end result was the best way for me to go. It’s important to share (if you feel comfortable) with others what your journey brought forth for you.

You never know who you might be helping and supporting with your story.

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GUTLESS & GLAMOROUS

ORGANIZATION

By Gaylyn Henderson FASHION EDITOR @GUTLESSGLAMOUR

Our style editor gives us an in-depth synopsis of her new organization and how sharing her struggles has inspired her to help others.

At the age of 14 I was diagnosed with a severe case of Crohn’s Disease. The disease has drastically impacted my life, as well as those that are close to me.

I decided that I wanted to make a difference and improve the lives of others dealing with not only IBD but other chronic illnesses. I don’t want others to suffer because of the fear of being stigmatized of life saving procedures.

I aim to encourage young women and men to embrace chronic illness through my blog and organization. Starting this organization has been a dream of mine for so long, but as we all know, life’s circumstances can change at a moment’s notice. But one thing I have learned, our circumstances my change, our timing of planned events my change or get altered, but everything will eventually work out as it was always intended to be!

Gutless and Glamorous is a start-up organization dedicated to improving the lives of those living with chronic illness. Through the development of programs we will provide support, education, and awareness.

With a special interest in those living with or contemplating life altering surgeries my mission is to empower and uplift those living with chronic illness and to raise awareness and erase the stigmas and misconceptions of life saving procedures.

My vision is a world free of unnecessary suffering from chronic illness due to stigmas associated with and around chronic illness. Gutless and Glamorous will leverage its resources and its voice to educate the masses. Effective education not only provides awareness but increases knowledge that can empower patients to achieve optimal health.

“

My body has tried to kill me. Yet I survived. But it left behind a constant reminder that I must look at daily. I know what it’s like to see your reflection in the mirror and feel unattractive. I used to be disgusted at the very thing that restored my health.

But then I realized, that anything that has the power to save a life can be nothing but beautiful.

”

- Gaylyn

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ONE RESULT OF LIFE WITH AN IBD: LESS SYMPATHY, MORE EMPATHY

By Rasheed Clarke CONTRIBUTING EDITOR @RASHEEDCLARKE Before I ever heard the phrases ulcerative colitis or inflammatory bowel disease, I had a mantra that I would refer back to whenever I felt as though my life was rough: “Starving kids in Africa.”

That mantra was, and still is, a sweeping overgeneralization of life on a continent comprised of 53 nations, no two of which are the same. As such, I retroactively apologize to African people for using a stereotype as a tool to alleviate my disappointments.

Perhaps it was leftover teenaged angst, but in my early twenties, I often felt as though my life was rather shit. During those low moments, I’d remind myself that even though I was in the midst of a mediocre existence, there were millions of people on this planet who had nothing, and likely never would.

Have to work odd hours? Starving kids in Africa.

No girlfriend? Starving kids in Africa.

Not rich and famous? Starving kids in Africa.

I still had a job, and an apartment, and food in the fridge. How could I be upset with my life when there were destitute human beings, many of them merely children, wasting away on dusty expanses of scorched earth?

My mantra never made me feel better, in the sense that it never made me feel happy. In fact, it made me feel worse because it forced me to awaken to the reality that for so many people, life is hopeless and agonizing and wretched, and there’s precious little that I could do to make things better. But that awakening shook me out of my sadness; largely by injecting a dose of guilt that convinced me I had absolutely no right to feel upset. How dare I complain when others have it worse? So much worse. And not just kids. And not just in Africa.

I used my silly saying even after I was diagnosed with UC, while fighting the flare-ups. Even though I was running to the bathroom 30 times a day, even when I was bleeding from my rectum, even when I was soiling my pants, I’d remind myself that somehow, in a sign of how horrible life on this planet can be, I was still better off than many people. It’s that line of thinking that kept me from complaining about my condition to other people. Even though I patronizingly referred to the downtrodden as “starving kids in Africa”, I still felt sympathy towards people who have a real rough go of it.

My first operation dealt a blow to my capacity for feeling sympathy. My colectomy in May of 2013 came with a series of complications that left me in many ways worse off than I ever was with UC. My poorly-constructed ostomy caused a daily burning of its surrounding skin, lodged awkwardly in my left buttock was a drainage tube, and strapped to my thigh was a plastic bag that collected the foul-smelling fluids of an abscess. Showering was hard. Dressing myself was hard. Going for a walk was hard. Sitting down was hard. Lying down was hard. Full-time work was out of the question. Running was virtually impossible. And what made it all worse was that for months I had more setbacks than signs of progress.

In that time, whenever I thought of someone worse off than myself, I shrugged it off. So what if there were homeless people? So what if there were needy children? So what if there were refugees? So the fuck what? I was in the worst condition I had ever been in, and my life was garbage. Sure other people may technically have had it worse, but my life was nothing to covet.

As my condition gradually improved, my ability to sympathize began to recover. On the day I had my drainage tube removed, I felt, dare I say, good. I left the hospital that afternoon and went for a long walk around downtown Toronto. I dropped a $5 bill in the black, beaten up baseball cap that a homeless man held out while asking for change.

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I had my second operation in February 2014, this one to reverse the ostomy and get my J-pouch running. The ensuing recovery has had its setbacks and successes, and as a result, I still don’t express sympathy as easily as I used to. I know life without a colon from here on out is always going to present difficulties. Difficulties that I’ll never be able to shake. That’s a hard reality to confront every day, and one that makes me feel little sympathy for people who complain about bad coworkers or bad boyfriends or bad bus service or bad weather or bad colds. Suck it up.

Having to endure a number of trying events, it makes it hard to feel sympathy for people when they moan about petty things.

It even takes a toll on one’s ability to show compassion for those who have big, pressing problems. It’s only after navigating to calmer waters that the capacity to sympathize can grow again.

It’s a different story when it comes to empathy, at least for me. While both sympathy and empathy are feelings of compassion, empathy is marked by compassion from the perspective of someone who’s been there. To that end, my experiences with UC and surgery and an ostomy and now a J-pouch have let me empathize much more with others who have similar health issues.

When I read posts written by other IBDers in the midst of their own challenges, I feel a connection with them, and I want to do something to make them feel better. I’ll leave short notes of encouragement or well-wishes, just to let them know someone else gets how shitty things are, and that same someone else really wants them to find better days.

Sometimes I find myself feeling empathy at unexpected times. On the bus to work one morning, an old woman stepped on and took a seat across the aisle from me. She reeked of urine. My first thought was not to feel repulsed or change seats. My first thought was about my old drainage tube and collection bag, both of which emitted a nasty odor. I remembered how I felt in public when I could smell the odor emanating from my fucked up body – scared, embarrassed, frustrated, and sad. I imagined the woman might feel the same way. I imagined she had a medical condition that required surgery and a rejigging of her internal organs. Maybe she had to wear adult diapers, like I have at various points both before and after surgery, and they weren’t containing the odor as they should. I didn’t say anything. I didn’t do anything. I just sat where I was and read my copy of Alan Weisman’s Countdown. I hoped that by behaving as though nothing was amiss, she might feel even a little less self-conscious. It was a silent expression of empathy.

For those of us with Crohn’s disease or ulcerative colitis, I think the ability to empathize with other IBDers comes easily. We want to make ourselves better, of course, but we want to make others with our conditions better as well, because we know damn well the severity of the diseases. And if we can’t medically heal others, we want to at least offer them our support.

I’m grateful for the kindness that other IBD patients have shown me over the years; the sort of kindness that’s rooted in truly understanding another’s plight. As a community, I’m confident that IBDers will keep expressing our hard-earned empathy to one another, not only at this festive time of the year, but any time it’s needed. As for my ability to sympathize with others, I hope it will grow as conditions around and within me improve. Just don’t bitch to me about a stuffy nose.

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FASHOSTOMY:

SHINE BRIGHT THIS HOLIDAY IN STYLE

By Gaylyn Henderson FASHION EDITOR @GUTLESSGLAMOUR

It’s the most wonderful time of the year. Or…it’s supposed to be right? If you are like me holiday season can be quite stressful.

However, it does present another opportunity to reflect on the craziness that is my life and be thankful that I made it yet another year.

Although the year may have been a tough one, it just proves that I am that much tougher yet again. It also provides an opportunity to be thankful for the friends and family that have stuck around through your craziness, through the good and bad, happy and sad.

Without our support systems it could be much tougher than it already is.

The holiday season can be stressful, but it does not have to show on the outside. Holiday parties, “gut” togethers, and events present yet another reason to show up in style. Here are a few of my favorite holiday inspired tips and looks for this season: You can never go wrong with a little black dress. I am always one for themed parties and adding a bit of festive décor is always appropriate!

A textured coat adds a pop of color to an otherwise plain ensemble. And can complete almost any outfit. It’s feminine and a sassy, also perfect to throw over a cocktail dress for a night out.

This holiday season I had a themed holiday party. I stepped out of the traditional feminine style comfort zone and tried something and it worked out great! The theme was “Roaring 20’s” and I opted for the traditional masculine attire during this era. Still glamorous!

Happy New Year!! I am a sucker for anything that sparkles and shines! A sequin dress is absolutely perfect for a New Year’s Celebration.

As always, make it work for you and your body. Try to step out of your comfort zone this season. Let that be your holiday gift to yourself. Only out of our comfort zones is ‘wear’ the true Christmas miracles can happen, anyway.

Muah! Happy Holidays!

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GLAMOUR GIFT GUIDE:

HOLIDAYS

By Emma Chapple BEAUTY & LIFESTYLE EDITOR @EMMA_CHAPPLE

Happy Holidays, everybody! For many of us IBDers, the holidays are that time of year where it’s socially acceptable to wear pyjamas all day, and you hope your intestines don’t pay you back for all the cheese you ate at that Christmas party (not that I know from experience or anything).

But what I really love about the holidays is the gifts! Not getting them, but giving them. Nothing’s better than seeing your loved one’s reaction when they tear off the wrapping paper of your carefullychosen present. After all, we’ve all been taught how it’s better to give than receive.

Everyone wants to give a good gift. The best ones are thoughtful and personal (seriously, gift cards are the biggest gift-giving cop out). So, how do you show the person in your life with IBD that you care?

That’s where I come in! Eight Christmases with Crohn’s disease (and four with an ostomy) have made me more than qualified to answer all the important questions. I know what we want.

I think it’s incredibly important to feel beautiful on the inside. When you’re dealing with crazy weight fluctuations, moon-face, or sporting a bag on your abdomen, it can be a struggle to find yourself attractive or sexy. Sometimes we need a little extra push to feel confident.

Where can you feel more beautiful than at a spa? Spa treatments big or small always leave me feeling fabulous. For me, it can be as simple as a mani-pedi. Just a note – saunas and ostomy flanges do not mix, so maybe refrain from giving the hot tub experience to the ostomate in your life.

Speaking of bettering oneself, yoga! Yoga can be incredibly beneficial for people with chronic illness, and IBD is no exception. (Check out our yoga pose suggestions from Katie S. in this issue).

For the uninitiated, there are many different types of yoga that are based in different poses and comfort zones (ashtanga, yin, vinyasa…). So, there’s literally something for everyone. Purchase a yoga studio membership for your loved one, or sign up for a class together.

If you’re more interested in the material gifts, worry not. I’ve also got something for you!

One gift that I love giving (and admittedly, getting) is the themed gift basket. It’s simple, but at the same time very sweet and personal.

A self-care basket is a fantastic gift idea. No, I’m not talking about stuffing a basket full of ostomy supplies and multivitamins.

I’m talking about the little luxuries – a warm bathrobe, a personal massager, and beauty products. The possibilities are truly endless (especially if you know your gift-ee’s favorite things).

For example, perhaps you’ve got a tea-lover in your life, and picking out a personalized tea collection is the ultimate way to their heart. After all, when you’re feeling sick, nothing’s better than curling up on the couch with a warm cup of decaf.

Retailers and e-tailers like David’s Tea, Teavana, or my new fave, My Beauty Tea definitely deliver. Skip the pre-made baskets and go for the customized experience (you might have to do a bit of snooping, but it’ll be worth it!).

Giving the perfect gift can be a challenge. It’s not as easy as stuffing an envelope full of gift cards, but trust me when I say the reaction is worth the extra effort.

Have a healthy, happy, and of course glamorous holiday!

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