IBD awareness week

8 years, 4 hospitalizations, 7 colonoscopies, 10+ different medications, 2 surgeries, one ileostomy, countless missed life opportunities, one journey with crohns disease.

Yesterday marked the start of crohn’s and colitis awareness week. This first week of December is designed as a time where the thousands of people living with these incurable illnesses are able to come together to raise awareness for bowel diseases. This week is super important to me, although I try to spread awareness all year round, because I know how important it is to get people talking about these often unheard of illnesses. I have had crohn’s disease for 8 years and I know how hard it can be to debunk the myth that Irritable Bowel Diseases (IBD) are just a “stomach ache”, a “choice”, or simply an un-talked about “poo-disease”.

To me and the other thousands of people living with IBD it is so much more than that. Crohn’s disease does not have a cure. Although it can be managed and put into remission with medication and surgery, it will be a lifelong struggle for someone, like me, diagnosed with it. One of the most frustrating things about living with a bowel disease is that they are invisible diseases. When people find out I am suffering from a chronic disease they often have a hard time grasping the severity of what I have been through because of my outer appearance. On any given day, you could look at me and see nothing wrong with me, where on the inside I am struggling from numerous debilitating symptoms. This invisibility to my sickness can cause problems when it comes to people’s views and legitimacy of crohn’s and other bowel diseases. Its hard to understand or relate to how sick someone really is when you look at them and from the outside they look perfectly normal. This begs the question, if you look fine from the outside, are you really that sick? I have dealt with this problem for years in my social life, my emotional life, my work life, and my school life just to name a few. Just because you cant see the problem doesn’t mean it doesn’t exist. This invisibility is a double-edged sword. It allows me to live a semi-normal life where my disease isn’t center stage, which is a blessing. It allows me a sense of discretion about my symptoms and the severity of my disease, but this invisibility also impacts the awareness or understanding of IBD. This week is a perfect opportunity to raise awareness for bowel diseases and to explain what someone living with one may encounter on a day-to-day basis. Crohn’s disease can affect so many other areas than just your entire digestive tract. I have suffered with eye problems, arthritis at the age of 19, dental issues, and fatigue so extreme its nearly impossible to get out of bed in the morning, and skin issues, just to name a few. Although someone with an IBD may be able to put on a brave face, please never doubt that they are probably struggling tremendously on the inside.

Going back to high school I remember a time where my symptoms were so extreme, so painful, so horrendous, I thought I was dying. I was young, I was scared, and I was reluctant to seek help. This was partially my own insecurity, but I also attribute it to the fact that back then no one around me talked about IBD. No one. Over the years I have seen improvements in this, with commercials and celebrities coming out of the woodwork to talk about their experiences with IBD. No one should have to go through what I went through. My world changed with my diagnosis in 2008. I had never known anyone with crohn’s disease and I felt like I was alone in this new “adventure” before me. It was a game I had no interest in playing. Being diagnosed with a chronic illness young, as I was, is a very hard thing for someone to wrap their head around. When you are 18 it’s hard to imagine living with pain and struggle for the rest of your life, but when your suffering its hard to imagine a time where it will be under control. It is because of this I care so deeply about spreading awareness about my disease.

For those who are blissfully unaware of what crohn’s disease is, (as I was prior to being diagnosed), it is a inflammatory condition that can affect the entire GI tract, from the mouth, all the way to the anus. Crohn’s is not to be confused with colitis, which is a similar in symptoms bowel disease that only affects the colon. Crohns most commonly affects the small intestine, or ilium, which is where the small intestine meets the colon. According to the Crohns and Colitis Foundation of America, crohns is also different from colitis in that it can affect the entire thickness of the intestines, where colitis involves only the innermost lining. Both crohns and colitis are irritable bowel diseases and both are chronic. According to CCFA, up to 800,000 Americans, both men and women of all colors alike, are affected by crohns disease. I would say it’s a safe bet to say that every person reading this knows someone else living with IBD. Awareness for crohns is so important because there is no cure. In fact, they don’t even know what causes it. There is always countless research and discussions about what causes crohns disease, but as of now there is no answer. What they do know is that crohns may have hereditary, environmental and genetic factors. In someone with crohns, the persons white blood cells mistake the digestive tract as an intruder, and essentially attacks it, causing inflammation which leads to the bouts of symptoms someone with iBD faces.

I have, not by choice, learned so much about crohns disease over the past 8 years. I have been forced to learn things I never imagined would affect me. My mission now is to pass some of that wisdom on to all of you because we all know someone with IBD, and it may help you better understand them. I encourage all of you to look at the CCFA website and see what you can learn and how you too can help break the stigma of those of us with an irritable bowel disease.

my two year lifetime

A lot can change in two years. The first week of September is always an emotional and challenging week for me. Its hard to wrap my head around the fact that it has already been two years since my emergency proctocolectomy. It seems like it was yesterday and a lifetime ago all at the same time…

When I really think about it though, for me, it was a lifetime ago. A short two year lifetime ago. Before September 3, 2014 I didn’t really know who I was. I was struggling with this identity of being a fun, energetic, happy young adult trapped in a sick girls body who I didn’t know, recognize, or like. I was “me” but I wasn’t. Since my diagnosis of crohns at 18 I have come to terms with the fact that I will always be a girl with a chronic disease. I learned to cope with and accept it. What I needed to learn the hard way was that there really is no way to cope with a disease such as crohns because it is constantly changing. No two days are ever the same and you never know what tomorrow will hold for you. Even on your good days, you’re sick. This becomes a sad part of your life. I have always embraced the challenge of accepting my body and all the different challenges that comes with it. I had never heard the words crohns before that phone call from my doctor in 2008 and from that moment on I promised myself that I would make it my lifes mission to inform as many people as I could about this disease that stole so much from me. Crohns has taken more from me than I could ever imagine it would, but it has also given me more in return than I could have ever asked for. It taught me compassion, it taught me empathy, it taught me that it is ok to ask for help, and most importantly, it taught me about a strength deep inside me I never knew existed. Sometimes I sit and I wonder who I would be and what choices I would have made if I never had to deal with this disease, and to be honest with you, I don’t know that I like the answer. Its so easy to look at someone in my situation and feel sorry for me, its most peoples first reaction. Once you get to know me, you will know that this couldn’t be further from the truth. Don’t feel sorry for me, because I know who I am, and for that I thank my crohns disease.

            On this week in 2014 I was preparing myself for what would be the biggest gamechanger in my disease progression so far. Learning to live with an ostomy bag was, and still is, hard to cope with. When I was told I would need this bag for the rest of my life (at the age of 24), it felt to me at first like there was a death in the family. A part of me died that day. My whole life as I knew it was turned upside down and for once I had no control over what was coming. I was entering an uncharted territory and while I had a wonderful support group around me, I was absolutely alone because unless you have it, you don’t get it. Two years ago I was experiencing a lot of “lasts”, some, stranger than others. You all may laugh, but farting. I will never fart again. I can no longer take long hot showers. I cant eat mushrooms, or pineapple, or brussel sprouts. I would never have a soft, smooth stomach that my husband could rest his head on. These may all seem like small things to you, but to me, they were lifechanging, and still are. What I didn’t realize at the time was, two years later, I wouldn’t remember this whole situations as a “death” but rather as the start of a new life. I will always consider September 3 as a “birthday” of sorts to my ostomy.

Dear ostomy,

Its hard to believe we have made it through two years together. There have been (countless) times where I wanted to give up, where I thought we would never be able to make this work. When we first met, I cant even describe to you the resentment I felt towards you. I never wanted you. I told numerous doctors to let me die before giving me an ostomy bag. I was a kid when I met you, and now, because of you, I have grown up. I will never be able to put into words what you have done for me and my quality of life. I simply didn’t have a quality of life before you came along, and together we have accomplished more then I ever thought possible. Its only been two years, but I find myself not being able to remember what life used to be like without you. This is probably because some of my best memories have you in them, and it isn’t hard to understand why. You saved my life on so many levels. Physically and emotionally I was ready to give up two years ago, and you were able to give me the gift of a lifetime; you made me healthy. Being healthy is something that I think a lot of people take for granted. Until you or someone you love is sick, youll never understand how lucky you are to be able to do day to day activities. Every single thing I do in my life I know I have you to thank for, because I know that two years ago without you it wouldn’t have been possible. Sometimes I get emotional thinking about how people I meet in my life now have NO idea what it took to get to where we are today. They will never be able to see the struggle, pain, and determination it took to get to this point in my life, and that is because I am not sick anymore, and I owe that to you, ostomy bag. Two years may seem like a long time, but in the bigger picture of things, we have a long time left together. I may not like you all the time, some days I will cry and hate you, but I promise to always remember a time when I didn’t have you, and I will associate those times with pain that I no longer feel because of you. I promise you to continue to do my part to break the stigma and raise awareness about you, and most importantly I promise to live my life to the fullest, never take a breathe for granted, and be the best me I can be. Happy birthday ostomy.

Cheers,

C

the infertility rollercoaster

Since opening up about my roller coaster ride that is IVF I’ve had many people tell me how brave it is to share my story, but also that they are not super familiar with what the procces of IVF really is. Our journey with infertility started years ago. Because of the severity of my crohns disease I hadn’t gotten a period for over 5 years. Without ovulating and menstruating, you obviously cannot become pregnant. Our journey with infertility became very closely connected to our journey with crohns. Those who know me know that kids are my passion and I have wanted a large family my entire life. Believe it or not, working with 12 infants everyday only made this ache for kids grow larger. Upon being diagnosed with a genetic chronic disease like crohns, and being so sick that I almost died, I began an internal struggle that was, and still is, hard for me to cope with. How could I possibly think about having children if there is any chance that I could pass this horrid condition on to my baby. For a long time I decided I wouldn’t be able to do it, and this realization that my dreams were shattering caused me endless tears. River and I would eventually go through rigorous genetic testing and counseling before making the decision to go through with IVF. The first step to this whole process was first and foremost to get me healthy. I knew in the condition I was in my body would never allow itself to conceive, or carry a child. After failing countless medications and surgical procedures in September 2014 I was told that the only option I had left for my crohns was a surgery called a total proctocolectomy. In the crohns world this is the surgery of all surgeries and the decision to go through with it was not a hard one because for me, it was literally life or death. During the proctocolectomy I had 14 (additional from my small bowel resection in 2012) inches removed from my small intestine, my entire colon, my rectum, and my anus removed and was left with a permanent ileostomy bag. My world class surgeon told me that I had the worst colon and rectum he had ever seen. Upon getting this surgery my body responded SO well even my doctors couldn’t believe it. Aside from the absolutely horrific recovery my body was so happy to be rid of the sick parts. When River and I made the decision to go through with this surgery we realized we were cutting our fertility rates by 80%. Once you are able to comprehend just how aggressive my surgery was it is easy to understand why we are in the position we are in today. When you remove such a large part of your internal organs your body develops scar tissue to fill the massive gaps left behind. In my case, my uterus tilted when my colon was removed and scar tissue began growing near my tubes, making it virtually impossible for me to conceive naturally. Of course, at the time, this wasn’t something we knew and we spent a year and a half trying for something that would ultimately never happen.

            Once we settled in Cleveland and my body was finally at a place where I knew I would be able to give a baby a healthy home, we began investigating our fertility options. I also have to take a minute to brag about my company, Hyland software. A typical round of IVF costs around $12,000. My amazing company pays for fertility treatments up to a certain limit, and we have paid $0 to this point. How AMAZING is it that they are giving me this opportunity? Sure makes me work a little harder at the office…

            The beginning consultations to see if we were even candidates for IVF were pretty strenuous and involved lots of tests, including an HSG to check if my tubes were open, genetic testing for river and myself, as well as lots and lots of paperwork. The paperwork before we even started the actual IVF cycle really discouraged me and knocked me back down to reality. Having to sit in an office with a lawyer and sign documents saying that if IVF resulted in twins we would have to terminate a pregnancy and signing a notarized document saying what would legally happen to our embryos if a.) one or both of us died or b.) we got divorced was overwhelming to say the very least, and this was before all the insane hormone treatments…

Next time, the IVF process.

Hugs,  C

infertility...warrior?

I am not a victim to my crohns disease. I am not embarrassed about my disease and what comes with it. I choose to face everyday head on and look at the hand ive been dealt as a blessing in disguise rather than a death sentence. I am not a victim.

Crohns disease is most commonly diagnosed in young adults, age 18-24. This also happens to be one of the most important and difficult times in ones life. It is, or was for me, when I was learning about self-confidence, about respect, and about who I was. From the start, I fell right into the statistic. I was diagnosed shortly after my 18^th birthday on the night before I was leaving for college. Although I was 18 when I first heard the words “crohns disease”, I was sick for many years before I decided to seek answers. Being different in high school is the one thing I didn’t want to be, but my sickness forced me to learn things about myself and change into the strong independent person I am today. Blessing. When I was 16 all I cared about was what I was wearing to school the next day, who was hosting Saturday nights party, and how I could sneak home after curfew. Having to change plans because I couldn’t leave my bathroom was not in my agenda, but it became my reality. I knew on the day I received that phone call that I had a choice to make. Be a victim, or be a warrior.

I like to think of myself as a positive person when it comes to most, if not all aspects of my life. Yes, sometimes I am pessimistic about the Cleveland browns superbowl hopes, but lets face is, who isn’t? On the other hand, when it came to my disease I never allowed myself to be defeated…or at least until recently.

Since my surgery in September 2014 that left me with a permanent ileostomy, I have achieved medical remission from crohns disease. For the first time in the 8 years since I was diagnosed I am healthy. I often get emotional when I am doing something as simple as gardening, going on a roadtrip, or as adventurous as hiking the hills of California because these are all things I was not able to do 2 short years ago. I do not take anything for granted anymore. Nothing. I know that everything I am able to accomplish in my day to day life is a gift, because I remember very clearly a time when I would not have been able to do it. This healthy version of myself has so many plans and dreams for the future, including the one thing I have wanted more than anything; a family.

When it comes to my crohns I have always been comfortable, which is strange considering that crohns deals with intestines, and poop, and things one generally would not talk about. You could ask me literally ANYTHING about my crohns and I would get so excited and tell you everything I know. When it comes to infertility I am the opposite, and I don’t know why. Even writing the words down pains me. I suffer from infertility. Because of all the trauma that my body has endured due to my surgeries and medications from crohns disease, my ability to do the one thing I feel like my body was made for has been compromised. When it comes to infertility I feel more like a victim than a warrior because I cant understand why this happened to me… To help me step out of this negative stigma I associate myself with, I am choosing to share my journey. For the past few months, my husband River and I have started the process of IVF, or in-vitro fertilization. In short terms, the process involves many different injections to stimulate your ovaries to grow more eggs than the body typically would, daily ultrasounds and bloodwork, a surgery to remove the eggs, where they are then combined with the sperm and grown in a lab before being transferred back into the female already fertilized. I have been through a lot in my life, but this is physically and emotionally one of the hardest things ive ever done. The process of trying to have a baby is hard enough before you add countless shots and hormones…

Many of you have seen pictures ive posted in the past few weeks in the hospital or at a doctors office, which once again has started to feel like home during these past few months. Although this has been a process that we don’t yet know the outcome of, the one thing I do know is no matter what the pregnancy test says at the end of this, it is a success in my book. It has brought River and I to a new level in our marriage. If your marriage can survive crohns disease it can make it through anything. If it can survive IVF, you deserve a fucking medal. Whats next? We wait. We wait and we enjoy each others company and time spent together, because if all goes as planned time will be few and far between in 9 months…

Only time will tell.