P
PlasmaStu
Guest
Dear Crohn's Forum:
My name is Stu, and I'm a 29 year old living with Crohn's Disease.
I was originally diagnosed with Crohn's/Colitis (they started by just calling it IBD and worked from there) when I was about 8-9 years old.
I've probably been through most medications out there over the 20 years from diagnosis to the present, from combinations of Sulpha drugs and Immodium in the beginning, to a combination of Lialda, Librax and Remicade infusions (every 6 weeks). I'm also not afraid to admit that I do find that, in a pinch, a few puffs of weed certainly settle things down.
I've been on prednisone for various lengths of time to respond to flare ups (which worked great aside from the side affects). I also went through a period of tube feeding during high school (that was a blast! j/k)
I really wish that 20 years ago (or even 15 years ago!) there were support group forums such as this. I've noticed threads about kids growing up with Crohn's and know exactly what they are going through. The embarrassment of having a lack of control... being afraid to go on field trips or to be more than a 2 minute walk from a bathroom was/is absolutely horrible.
I've also dealt with Crohn's in a very stressful work environment, trying to get projects done in advance of meetings... making sure I had time to use the bathroom right before a meeting and praying that I'd make it through.
Over the past 2 years or so, I've found that my treatment regime and GI doc have done a very good job of keeping my symptoms in check. I don't expect to ever be 100%, but I know the tricks of the trade now. Some of them may not be completely legal where I live, but they make it so I can live with this chronic disease.
I wish you all the best in finding the right combo to work for you and if my 20 years with Crohn's can be of some help, I'll certainly do my best!
-Stu
My name is Stu, and I'm a 29 year old living with Crohn's Disease.
I was originally diagnosed with Crohn's/Colitis (they started by just calling it IBD and worked from there) when I was about 8-9 years old.
I've probably been through most medications out there over the 20 years from diagnosis to the present, from combinations of Sulpha drugs and Immodium in the beginning, to a combination of Lialda, Librax and Remicade infusions (every 6 weeks). I'm also not afraid to admit that I do find that, in a pinch, a few puffs of weed certainly settle things down.
I've been on prednisone for various lengths of time to respond to flare ups (which worked great aside from the side affects). I also went through a period of tube feeding during high school (that was a blast! j/k)
I really wish that 20 years ago (or even 15 years ago!) there were support group forums such as this. I've noticed threads about kids growing up with Crohn's and know exactly what they are going through. The embarrassment of having a lack of control... being afraid to go on field trips or to be more than a 2 minute walk from a bathroom was/is absolutely horrible.
I've also dealt with Crohn's in a very stressful work environment, trying to get projects done in advance of meetings... making sure I had time to use the bathroom right before a meeting and praying that I'd make it through.
Over the past 2 years or so, I've found that my treatment regime and GI doc have done a very good job of keeping my symptoms in check. I don't expect to ever be 100%, but I know the tricks of the trade now. Some of them may not be completely legal where I live, but they make it so I can live with this chronic disease.
I wish you all the best in finding the right combo to work for you and if my 20 years with Crohn's can be of some help, I'll certainly do my best!
-Stu
