Sunday, November 11, 2012
Guest Post: Sarah's Story
We love meeting new gutsy friends - and are thrilled when they want to contribute to our blog! Meet Sarah: the founder of My Journey with Crohn's, a great site featuring interviews with IBDers and lots of information. Be sure to check her out on Facebook and Twitter as well!
My name is Sarah Choueiry and I am honored to share my story with Crohn’s Disease.
I have to say that I never really took my Crohn’s seriously until these last couple of years. I remember my doctor telling me this, but there is something about being young and being diagnosed with something that may be too big to understand at the time. He said that typically, we have an “invincibility” feeling about ourselves and we don’t think it can really affect our lives. Well for me, I know that was the case.
I was 12 when I started to have symptoms of Crohn’s Disease. It happened after a trip to Lebanon, were I caught a bad stomach virus (along with the rest of my family) but ever since that my stomach was never the same. My theory is that it was dormant till then, and that event woke it up, but who really knows. It took about two years for my doctors to finally diagnose me. Initially, my general doctor blamed it on a lot of things, saying it was psychological, my eating habits were bad and so on. Funny thing is, I was a happy kid who came from a loving family and who ate a very healthy Mediterranean style diet, so that did not add up. My mom fought with this doctor a lot and finally got him to send me to a specialist, who once hearing my symptoms automatically said, “I would like to test you for Crohn’s Disease.” I remember thinking, “What is Crohn’s Disease?” but never really asking it out loud.
Well after my first, of many of course, colonoscopies at 14 (and many other tests) my gastroenterologist was right, I had Crohn’s Disease. The thing is, at that time, there was not a lot of research on Crohn’s Disease. The doctor put me on Asocal and that was about it. She had said that diet did not matter so we didn’t think of altering anything I was eating. When I would have a flare up, I would automatically eat light out of survival and I remember having a lot of rice and bland chicken, toast with cream cheese and melted cheese on pita bread. Notice the amount of dairy? We had no idea that dairy could be an issue because my whole life I always ate a Mediterranean diet, and that consists of a lot of cheese. Actually, to be honest, I didn’t really associate the harm of cheese in my stomach (it doesn’t affect all with Crohn’s but it definitely does mine) until two years ago when I did a “vegan” cleanse for a month and started to add cheese back and noticed the negative effects it had. Now that was a sad day for me . Who doesn’t love cheese, right? That is one hard thing about my disease for me. I am a huge lover of food and love to create recipes and I become limited on what I could eat, depending on how my body was feeling. It also limits a lot of the places I can go to eat, because the majority of my diet to be organic, fresh and meat free. For me, this diet works best to make me feel good. But hey, it is a challenge to be more creative and I am more then happy to accept it!
But back to high school, all I really remember is not telling anyone because I felt embarrassed. Embarrassed that I had to run to the bathroom after every meal and that it would smell so bad. The worst! I remember having to go so bad and getting up to leave a class and the teacher called me out on it. Made me stand in front of the class asking, “Where do you think you are going? Can you not hold it in?” I thought I was going to die. After the class, I went up to her to tell her my situation in private and she definitely never did that again. I had my visits to the emergency room but nothing a weekend at home, with some TLC, couldn’t cure.
In college, I started to feel it more. Maybe it was because I moved away from home (only an hour away but being in the dorms and away from my norm was stressful for me) and I had my first real boyfriend. He was actually great when it came to me and having Crohn’s. We would have a secret code that I would use when I had to use the bathroom ASAP and with out a question he would get me to a bathroom. I was lucky, because I know that dating in college, especially with Crohn’s Disease, is not easy at all. I remember having more attacks then but not running to the emergency room like I used to because I figured, it doesn’t do anything for me. I end up going right back home anyways with them saying, “stay hydrated, take your meds and try not to stress out.” As if that was the magic to keeping it all in remission and I was actively trying to not do it. It got annoying to be blamed or told I was causing my attacks, because people did not get it, I could be perfect and still have a flare up.
Mid college it got pretty bad and I began a medication called 6mp, I also met my doctor who I have today and adore. It is so important to find a gastroenterologist you can develop a true respect and relationship with. I began the 6mp, gritting my teeth and complaining, because I believed that this was an over exaggeration. That taking these meds was admitting it was a bigger deal then it was. I thought, “so what, some tummy aches, who cares. Ill get over it, why are we getting so dramatic with 6mp.” BUT I took them and I did a shitty job of it, to be honest. I still at that point never took the time to research what Crohn’s Disease really was. I never even met anyone at that time who had Crohn’s Disease. I didn’t think anything could get me down. Also at that time I broke up with my boyfriend and very quickly began a relationship with someone that unfortunately was not as positive and supportive, and I think that contributed to the issues with my Crohn’s acting up. With me, I began to notice how much my stress level and happiness level played a role with how active my Crohn’s could get.
Well since then I don’t think I ever really remember having “normal” poops. Sorry to be graphic but its true. I was used the consistent stomach aches and pains, and I just knew how to deal with it. My norm was going to the bathroom after stressful tests, after meals and I slowly started to notice the correlation between food and my stomach around the end of college. Crazy to think it took that long but I typically am a very healthy eater, so I never thought that there was more to it then just doing what I was doing. I went straight from college to my masters. After my masters I moved to Arizona to be with the guy (the one that I SHOULD have let get away… haha) and just a month after I moved I broke up with him and began a life on my own, away from my family, starting a new career and just learning to be with me. I have to say, it was the best year in my life. I also decided to stop taking the medication on my own, without consulting with my doctor. That was very stupid of me and I was lucky nothing bad happened, I would never recommend that to anyone. I really began to take time to learn about food and its effects in my body. I began to do yoga a lot more and study the effects of meditation on calming stress. I began to make great friends and grow closer to the ones I had back home and I also was not on medication. I have to say, I went into remission that year. I don’t recall any stomach problems at all. I have to contribute that to me finally finding a balance that worked for me. I cooked every night and never went out to eat, so I was in control of what went in my body and really made sure to take care of myself physically, emotionally and mentally. I always made sure to be surrounded by love too and had a great support system. I am lucky because I am blessed with a mother and father who ALWAYS stood by me and supported all my choices in life, and I honestly, still, don’t know what I would do with out them. It makes me sad to think that some may not have that support and that is one of the reasons I created my web site, but ill get to that later!
So after Arizona I moved back to LA, met a new man in my life, started to work at a school I loved (I forgot to mention, I am a Speech Language Pathologist), and was back near my family and friends. I was doing ok not being medicated. Key word is ok. I was not perfect but I could handle the bathroom runs and occasional bad tummy aches. My Crohn’s, I think, was tired of getting ignored and decided to scream a little louder. In this last year and a half I started to go downhill. I was experiencing a lot of stress in my life, I moved to a new city away from my family (again), got engaged, was working at a job where everyone was so negative (that really affects me, being surrounded by negative people), got married and was meeting new people all over again. I am the type of person that does not do good with big changes or not feeling secure/stable in my life. Well, this last year a lot of that was happening. I began to try and search natural ways to heal my flares because they were getting much worse and I was having a hard time dealing with my every day routine. I even went to a holistic doctor and drank this specialty tea three times a day that tasted like crap and went on a pure vegan diet. That did not work. I ended up giving in and made an appointment with a gastroenterologist down in San Diego, while emailing my Gastroenterologist in LA to help guide me because I still considered him to be MY doctor and I trusted him. Well, after all the tests were done, I was right, my Crohn’s was back and with a vengeance. This was about 5 months ago, which means it had been active for a while because it took me a while to speak up. Well, we got an opportunity to go back to LA because my husband found a partner for a business he was starting and I knew I had to get back to LA to get better. I wanted to go back to my doctors and start, what I called, “the healing process.” The first week I moved back I had an appointment with my general doctor (who I also adore and have been with for a long time) and my gastroenterologist. We began me right away on 6mp and entecort, and of course I was gritting my teeth. Well, 2 months into the treatment I was hospitalized. I knew something bad was coming and tried to see my doctor the day before I went to the emergency room because the pain I was enduring was worse then normal, well I was right (that is one thing I know I am good at, listening to my body. That is key, if I can give any advice. Listen to your body and don’t ignore it. If you feel something is going on, check it out and go see your doctor. Be your advocate!). I ended up hospitalized for 7 days because my small intestine had obstructed and I needed to be put on IV steroid to see if that would open it back up by reducing the swelling OR it was surgery. Thank god the IV steroids worked. Also to find out the 6mp and the entecort was not doing it for me. My blood counts were VERY low and I just kinda fell apart. That week was hard for me, emotionally, mentally and physically. I was lucky because between my parents and my husband, I was never left alone to get too depressed about it all but it was hard. I understand if you are there now or have been there, its tough but man I give us props because I feel people who have Crohn’s are really a tough group of people. You cannot knock us down easy!
Well, that experience led me to create www.myjourneywithCrohn’s.com. I hope with this web site to share everything I know about Crohn’s and the tips that have helped me. I share things like recipes (a lot of course I give credit to my mom creating), news updates, interviews with people in the Crohn’s community, eastern/western medicine, funny stories and much more. I am proud of this web site. I think I need this web site. It is my therapy and it has allows me to meet such amazing people who have Crohn’s and hear their story, which it inspires me every day! I am hoping to do the same for others. So right now, I am all about My Journey With Crohn’s, healing and living my life. I start back up at work in January and will continue to dedicate a lot of my time on My Journey with Crohn’s. My future goal is to create a retreat at the end of next year for people with Crohn’s and oh, it will be GREAT! Can’t wait to share that soon. I am also starting up on a medication called, Humira and waiting to see if it works for me. I will continue to eat right and take care of myself emotionally and mentally, and try always to surround myself with positive people that make me laugh. I truly believe holistic methods help but there has to be a balance, at least for me, between eastern and western medicine at this time. I do hope to go into remission and only rely on eastern medicine to stay that way, but we will see what the future holds and I will keep fighting.
My advice, if I may share, is to never give up. Always try. Set goals for yourself and if you mess up, who cares, you are HUMAN. Just try again tomorrow. No need to ever be harsh on ourselves. Surround yourself with only positive people (if you can, because that can be hard, I know). Remember life is about choices (well not the choice to have Crohn’s haha) but you know what I mean, a choice to fight!
I send all my love to all of you who have struggled or are struggling and I want to let you know you are not alone! Please visit me any time on my web site