- Joined
- Apr 13, 2012
- Messages
- 6
Hello all! I've frequented this forum, looking up lots of information about medication, but never joined! I'm ready to creep out of my shell and tell my story...
I was diagnosed eleven years ago to this month, when I was ten years old. I was in fourth grade at the time, and for a scrawny little grade school girl--BOY was I a skelaton. I coulden't eat anything without having to run into the bathroom. It all started after a strange bout of pneumonia in third grade, and all of a sudden the symptoms started surfacing. I was suspected to have lactose intolerance, celiac disease, name any kind of food related intolerance and they thought I had it. I was really young at the time, so no one suspected that I had developed Crohns! I remember being that small, falling asleep on the bathroom floor on school nights, because I had to keep running back and forth all night. Though I've had to deal with various bouts of flares through my history with the disease, I never want to get back to that place. It was a nightmare.
Fourinatly, Childrens Hospital Boston served as my knight in shining armor. I had an inconclusive barium swallow test, and let me tell you that liquid does NOT taste like a strawberry shake, so they signed my up for a colonoscopy and upper GI. I remember waking up after the procedure in recovery, looking up and seeing a girl of my age staring right back at me from across the room. We both waved at each other, in our drug induced state, and smiled. In that moment, I began to realize the amazing power that two people bound by illness can have, even if it was for a split second.
I got my cherry popcicle, and when I came to, I came to terms with my Diagnosis. Crohns illeitis. I had no idea what it meant at first, but I was given asacol tabs to swallow. I diddn't know how to swallow pills, so my mom and my brazen irish babysitter tried to teach me how one morning. Bernadette goaded me into angrily swallowing my first pill of Asacol, and after that, I could do it all by myself. I was so stubborn! Even on just the Asacol, I improved rapidly. I was a dancer, a soccer player, and participated in school plays. I could resume activity as normal, and I began to think that all of my fears had washed away.
Thinking back on my diagnosis at such a young age, I was so lucky to have had caught it so early. I accepted the fact that I had Crohns so easily, even though I coulden't tell anyone beyond my family what was going on. I was so afraid that my classmates would see me differently, or worse, make fun of me for having to run to the bathroom every ten minuites of class!
My adolescence proved to be challenging, especially during puberty. I would go in and out of flares every couple months, never totally being in remission. I ate VERY well for a budding teen, and I attribute to a lot of my good health to that. My mom is an RN, and my entire family was so supportive of my through my early, and even later years. Through 6mp, prednisone, flagyl, even when things were at their worst, I had a team waiting behind me to step in and lend me a hand. Childrens hospital was a fantastic resource to me, and later I moved onto Mass General. When I was old enough to look up more information about Crohns, I got really scared. It was really depressing to see what might be on the horizon for me, and I diddn't want to come to terms with it. I did my fair share of running away from the fact that I have to live a different, very much medicated, lifestyle. Though I still fall into this place from time to time, I am now more empowered by the relationship I have with my body, and my symbiotic relationship with disease.
I'm 21 years old now, and I can't tell you how lucky I've been to have come this far without surgery. To everyone that has had to have surgery, or multiple surgeries, you completely inspire me. I know that someday I will have to face what you are facing, and I want to wish you the best and hope the road to recovery is smoother from here on out... I hope I have the same resilliance when the time comes for me. I've had nasty hemmerhoidal lesions from having crohns for a while, but nothing serious enough to operate on. I had my gallbladder removed October of 2011, every uncle and aunt from my moms side of the family has had theirs taken out, I guess I just had mine out early! I shattered my femur in 7th grade due to a horsebackriding accident, which was AWFUL not being mobile with crohns, but ten months later I was up and walking again, AND in remission for a bit=) I've been hospitalized a few times, but it was more hydration issues from being sick for a prolonged period of time, or from nausea onset from 6mp. I never responded well to that drug. I've been on it a handful of times, and I've had bouts with it where the nausea was SO bad, I would just vomit bile profusely until I coulden't take it anymore and had to be admitted to the ER.
I try to stay positive in the face of illness, but sometimes I falter. I still get embarrased of having to run out of dinner with friends to the bathroom, where I'll stay for a good half an hour or so. And sometimes, when you try to talk about what life has been like with crohns, its really difficult to try not to make your listner uncomfortable. I'm in my junior year of college, and I talk with an amazing counsellor at school to talk about what I feel like I can't express to my peers.
I've been dealing with more of Ileocolitis now a days. Currently I'm steroid dependant, Entocourt (EC) just worked TOO WELL for me. I'm on a 20mg dose of prednisone now, and my usual asacol, to tide me over until I go on Cimzia. As a woman, thinking about my ability to have kids or not, Cimzia seems like the perfect biologic for me--I go on it in two weeks, and if you have any advice i'd love to hear it! Though, at this stage in my life, i don't really want kids--I just want to have so many puppies=) St. Bernards to be exact... I just want the option to choose some day.
I'm currently centering my BFA thesis in photography at the Art Institute of Boston, photographing those who have experienced chronic illnesses and physical traumas. My experiences with Crohns have given me a wonderful gift--I get to reach out to those who feel as I do, and have a convorsation with them. To learn what its like to be living with illness, in different ways that I do, or even similar to my own story. It has really been an eye opening experience for me, and I cherish the time I have spent with each and every one of the people I have met in this process. It all started when I met a wonderful character in MGH, when I was waiting for some test results to rule out a possible stricture, YIKES, and it completely changed my life. If you want to read more, I have a wordpress blog and the link to the project is on there--its my Crohnie art blog! Yay!
http://bridgetinabox.wordpress.com/
Well, thats me I guess=) I just wanted to reach out to all of you and hope you are feeling well, and if not, that you can harness immense power inside yourself to press forward, even in the face of incredible hardships. You all inspire me to do the same=)
I was diagnosed eleven years ago to this month, when I was ten years old. I was in fourth grade at the time, and for a scrawny little grade school girl--BOY was I a skelaton. I coulden't eat anything without having to run into the bathroom. It all started after a strange bout of pneumonia in third grade, and all of a sudden the symptoms started surfacing. I was suspected to have lactose intolerance, celiac disease, name any kind of food related intolerance and they thought I had it. I was really young at the time, so no one suspected that I had developed Crohns! I remember being that small, falling asleep on the bathroom floor on school nights, because I had to keep running back and forth all night. Though I've had to deal with various bouts of flares through my history with the disease, I never want to get back to that place. It was a nightmare.
Fourinatly, Childrens Hospital Boston served as my knight in shining armor. I had an inconclusive barium swallow test, and let me tell you that liquid does NOT taste like a strawberry shake, so they signed my up for a colonoscopy and upper GI. I remember waking up after the procedure in recovery, looking up and seeing a girl of my age staring right back at me from across the room. We both waved at each other, in our drug induced state, and smiled. In that moment, I began to realize the amazing power that two people bound by illness can have, even if it was for a split second.
I got my cherry popcicle, and when I came to, I came to terms with my Diagnosis. Crohns illeitis. I had no idea what it meant at first, but I was given asacol tabs to swallow. I diddn't know how to swallow pills, so my mom and my brazen irish babysitter tried to teach me how one morning. Bernadette goaded me into angrily swallowing my first pill of Asacol, and after that, I could do it all by myself. I was so stubborn! Even on just the Asacol, I improved rapidly. I was a dancer, a soccer player, and participated in school plays. I could resume activity as normal, and I began to think that all of my fears had washed away.
Thinking back on my diagnosis at such a young age, I was so lucky to have had caught it so early. I accepted the fact that I had Crohns so easily, even though I coulden't tell anyone beyond my family what was going on. I was so afraid that my classmates would see me differently, or worse, make fun of me for having to run to the bathroom every ten minuites of class!
My adolescence proved to be challenging, especially during puberty. I would go in and out of flares every couple months, never totally being in remission. I ate VERY well for a budding teen, and I attribute to a lot of my good health to that. My mom is an RN, and my entire family was so supportive of my through my early, and even later years. Through 6mp, prednisone, flagyl, even when things were at their worst, I had a team waiting behind me to step in and lend me a hand. Childrens hospital was a fantastic resource to me, and later I moved onto Mass General. When I was old enough to look up more information about Crohns, I got really scared. It was really depressing to see what might be on the horizon for me, and I diddn't want to come to terms with it. I did my fair share of running away from the fact that I have to live a different, very much medicated, lifestyle. Though I still fall into this place from time to time, I am now more empowered by the relationship I have with my body, and my symbiotic relationship with disease.
I'm 21 years old now, and I can't tell you how lucky I've been to have come this far without surgery. To everyone that has had to have surgery, or multiple surgeries, you completely inspire me. I know that someday I will have to face what you are facing, and I want to wish you the best and hope the road to recovery is smoother from here on out... I hope I have the same resilliance when the time comes for me. I've had nasty hemmerhoidal lesions from having crohns for a while, but nothing serious enough to operate on. I had my gallbladder removed October of 2011, every uncle and aunt from my moms side of the family has had theirs taken out, I guess I just had mine out early! I shattered my femur in 7th grade due to a horsebackriding accident, which was AWFUL not being mobile with crohns, but ten months later I was up and walking again, AND in remission for a bit=) I've been hospitalized a few times, but it was more hydration issues from being sick for a prolonged period of time, or from nausea onset from 6mp. I never responded well to that drug. I've been on it a handful of times, and I've had bouts with it where the nausea was SO bad, I would just vomit bile profusely until I coulden't take it anymore and had to be admitted to the ER.
I try to stay positive in the face of illness, but sometimes I falter. I still get embarrased of having to run out of dinner with friends to the bathroom, where I'll stay for a good half an hour or so. And sometimes, when you try to talk about what life has been like with crohns, its really difficult to try not to make your listner uncomfortable. I'm in my junior year of college, and I talk with an amazing counsellor at school to talk about what I feel like I can't express to my peers.
I've been dealing with more of Ileocolitis now a days. Currently I'm steroid dependant, Entocourt (EC) just worked TOO WELL for me. I'm on a 20mg dose of prednisone now, and my usual asacol, to tide me over until I go on Cimzia. As a woman, thinking about my ability to have kids or not, Cimzia seems like the perfect biologic for me--I go on it in two weeks, and if you have any advice i'd love to hear it! Though, at this stage in my life, i don't really want kids--I just want to have so many puppies=) St. Bernards to be exact... I just want the option to choose some day.
I'm currently centering my BFA thesis in photography at the Art Institute of Boston, photographing those who have experienced chronic illnesses and physical traumas. My experiences with Crohns have given me a wonderful gift--I get to reach out to those who feel as I do, and have a convorsation with them. To learn what its like to be living with illness, in different ways that I do, or even similar to my own story. It has really been an eye opening experience for me, and I cherish the time I have spent with each and every one of the people I have met in this process. It all started when I met a wonderful character in MGH, when I was waiting for some test results to rule out a possible stricture, YIKES, and it completely changed my life. If you want to read more, I have a wordpress blog and the link to the project is on there--its my Crohnie art blog! Yay!
http://bridgetinabox.wordpress.com/
Well, thats me I guess=) I just wanted to reach out to all of you and hope you are feeling well, and if not, that you can harness immense power inside yourself to press forward, even in the face of incredible hardships. You all inspire me to do the same=)
