Hello!
I'm 15, soon to be 16, and you can call me Gigi. I was diagnosed with Crohn's Disease in 7th grade, when I was 11. Now, going into my Junior year of highschool, I am still struggling on a daily basis to deal with the horrible affects of CD (although I'm very greatful it's not as bad as it could be.)
Pre-diagnosis, eating food and suffering from stomach problems was always big part of my life. I began to eat very bland foods by choice to avoid stomach problems and was labeled a horribly picky eater. Even limiting my diet to bland foods wasn't enough to keep my problem in check. I had many problems with uncontrollable diarreah after eating and in the middle of the night that left me fearful and embarrassed. When I had these "explosions" of the stomach, as I called them, I would cry and wonder if this would last my whole life. My mom didn't know how to help me handle it after having me try all sorts of stomach-aiding bacteria culture pills, anti-acid pills, etc. Thus, we asked my pediatrician for help.
Well, my pediatrician was skeptical of my problems and thought I was anorexic and trying to cover it up because I was 30 pounds underweight and started to look unhealtheir as each day passed. I pleaded with him to get me help and it took a few visits and a stool sample for him to finally send me to a GI doctor. After having a colonoscopy/upper-ednoscopy, blood tests, stool tests, and a barium test they diagnosed me with crohn's in spring of 2008.
It was a relief to have a diagnosis but it scared the crap out of me. The diagnosis was a lifelong uncureable disease, and thats enough to scare any kid. I was taking 25 different pills a day, 6 of them being sterroids. It took about 6 months for me to notice a difference in the way I felt but I wasn't growing.
So the summber before 8th grade doctors and I were unsatisfied with my growth because I was still 65 pounds and 4'5'' which was way too small so I started feeding myself through a nasal-gastro tube for 9 hours each night. I did that for 1 and a half years, but stopped because insurance didn't pay for it because it wasn't "necessary to my survival" and it was costing tons of money that we couldn't afford to keep up with. But it helped me a lot because I came out in 9th grade as 94 pounds and 5'3'' which are good results. However, since then my growth has been at a stand-still and I've not grown in height or weight for over a year which is a problem because I don't have a period so I haven't hit pueberty and doctors want to see as much growth development as possible while I still have a chance to change the outcome. Has anyone else had growth stunded by CD?
Nowadays I'm on a lot less medication although I'm not in remission. I take nexium, lialda, 6-mp, and lots of supplements that I can't remember. I am considering starting Remicade, but I have to think about it more before making my decision.
One thing I hope this forum will help me with is seeing if any other young CD patients can tell me how they put up with the stress of CD during school and social situations. I nearly failed an exam freshman year because I was having an awful flare-up and needing to use the bathroom. We were not allowed to use the bathroom though so i sat there for 2 hours barely focused on my exam and more on the fact that I didn't want to have an accident (the sounds that my stomach were making had the whole class distracted too.) I was asked to prom by a junior this year, an ideal situation for sophomores who usually cant go to prom. I was so excited until the night of, I started flaring so bad that I spent the entire night in the beautiful prom venue's bathroom crying and...well, you know. I ruined my date's prom night as well as an experience that should have been amazing for me as well.
Also, CD along with other things related to this disease have contributed to extreme anxiety (including anxiety attacks and panic attacks) and depression. Is this common with CD patients, or am I just one of those stupid hormonal teens that doesn't know how to deal with life?
So anyways, I'm excited to get support and learn how to deal with the everyday challanges of dealing with this crappy disease.
:biggrin:
I'm 15, soon to be 16, and you can call me Gigi. I was diagnosed with Crohn's Disease in 7th grade, when I was 11. Now, going into my Junior year of highschool, I am still struggling on a daily basis to deal with the horrible affects of CD (although I'm very greatful it's not as bad as it could be.)
Pre-diagnosis, eating food and suffering from stomach problems was always big part of my life. I began to eat very bland foods by choice to avoid stomach problems and was labeled a horribly picky eater. Even limiting my diet to bland foods wasn't enough to keep my problem in check. I had many problems with uncontrollable diarreah after eating and in the middle of the night that left me fearful and embarrassed. When I had these "explosions" of the stomach, as I called them, I would cry and wonder if this would last my whole life. My mom didn't know how to help me handle it after having me try all sorts of stomach-aiding bacteria culture pills, anti-acid pills, etc. Thus, we asked my pediatrician for help.
Well, my pediatrician was skeptical of my problems and thought I was anorexic and trying to cover it up because I was 30 pounds underweight and started to look unhealtheir as each day passed. I pleaded with him to get me help and it took a few visits and a stool sample for him to finally send me to a GI doctor. After having a colonoscopy/upper-ednoscopy, blood tests, stool tests, and a barium test they diagnosed me with crohn's in spring of 2008.
It was a relief to have a diagnosis but it scared the crap out of me. The diagnosis was a lifelong uncureable disease, and thats enough to scare any kid. I was taking 25 different pills a day, 6 of them being sterroids. It took about 6 months for me to notice a difference in the way I felt but I wasn't growing.
So the summber before 8th grade doctors and I were unsatisfied with my growth because I was still 65 pounds and 4'5'' which was way too small so I started feeding myself through a nasal-gastro tube for 9 hours each night. I did that for 1 and a half years, but stopped because insurance didn't pay for it because it wasn't "necessary to my survival" and it was costing tons of money that we couldn't afford to keep up with. But it helped me a lot because I came out in 9th grade as 94 pounds and 5'3'' which are good results. However, since then my growth has been at a stand-still and I've not grown in height or weight for over a year which is a problem because I don't have a period so I haven't hit pueberty and doctors want to see as much growth development as possible while I still have a chance to change the outcome. Has anyone else had growth stunded by CD?
Nowadays I'm on a lot less medication although I'm not in remission. I take nexium, lialda, 6-mp, and lots of supplements that I can't remember. I am considering starting Remicade, but I have to think about it more before making my decision.
One thing I hope this forum will help me with is seeing if any other young CD patients can tell me how they put up with the stress of CD during school and social situations. I nearly failed an exam freshman year because I was having an awful flare-up and needing to use the bathroom. We were not allowed to use the bathroom though so i sat there for 2 hours barely focused on my exam and more on the fact that I didn't want to have an accident (the sounds that my stomach were making had the whole class distracted too.) I was asked to prom by a junior this year, an ideal situation for sophomores who usually cant go to prom. I was so excited until the night of, I started flaring so bad that I spent the entire night in the beautiful prom venue's bathroom crying and...well, you know. I ruined my date's prom night as well as an experience that should have been amazing for me as well.
Also, CD along with other things related to this disease have contributed to extreme anxiety (including anxiety attacks and panic attacks) and depression. Is this common with CD patients, or am I just one of those stupid hormonal teens that doesn't know how to deal with life?
So anyways, I'm excited to get support and learn how to deal with the everyday challanges of dealing with this crappy disease.
:biggrin:
Last edited:
