Just joined up today, but lived with Crohn's for about 9 years starting at age 11.
I guess it started when I'd just started secondary school. I was fairly active fitness wise before getting any symptoms, and was pretty good with regards to my grades. A few months in I just started feeling huge constipation and stomach pains. Some kids thought I was faking it but I wasn't too bothered by that really, I wasn't really interested in their opinions. The main problem I had was with doctors. I mean this is 9 years ago now so I can't tell you what they put me on trying to relieve me of my symptoms, but none of it worked. A good 8-9 months later they decided I'd be better off visiting a doctor a good hour and a bit away, in a childrens hospital.
While this was a bit of a inconvenience for me, they were right. After spending a week inside (and one 12th birthday!) I was diagnosed. If I remember right I was put on azathioprine and started a modulen only diet for 8 weeks. While it wasn't the nicest thing in the world it did make me feel better, for a while at least. The problem was that after a while I would get ill again, as you do, so they'd start the modulen course again. After a while of going on the diet and upping my meds it had got to the point where I was spending 6 weeks well and 8 weeks not eating, so that had to go.
I then started infliximab (remicade is it called in other countries?), which did help for a little while, but again I guess I built up a tolerance towards it, and it just didn't work for long enough.
I'm going to shorten the next couple of years but essentially it's going on infliximab, upping the dose/lowering the time between weeks. Going on roids, that needle I've seen discussed here that you take every couple of weeks. I went through diets, tried getting fit, but nothing really worked. You name it I've probably been on it at some point.
At 19 it was the worst it had been ever. I was struggling to get through college (with a 50% attendance or something, and I never really did stay in the whole day). I couldn't concentrate on anything, didn't allow myself to drive for obvious reasons. Eventually it got to the point where I had to go into A&E. I had doctors monitoring me for a couple of days, having CT scans (or something, I wasn't quite with it that week!) to check the state of my stuff. After a few days they decided it had to be emergency surgery, somewhere near my 20th birthday (within a day or two, I don't remember much).
Spent the next week after it in hospital sleeping, then got allowed to go home. Through all this I managed to get a place at university in Portsmouth, where I'm at now.
In 9 years this is the first I've registered or even looked at a crohns forum. I guess now I'm just confused. I mean apart from the stoma I feel a lot better than I have at any point through my teenage years. But now I just don't know what to do. I'm doing well in my course, learning things and teaching myself things. I've been hitting the gym 3/4 times a week. Eating well. Been social for the first time in a while, going clubs/pubs/out in general. But I still just don't feel right. I guess I'm wary of the fact that I am most likely going to get ill again in future, and that most things I do now won't have much of an impact later on, but I don't really know.
Looking forward to talking to you all and posting here
Sean
I guess it started when I'd just started secondary school. I was fairly active fitness wise before getting any symptoms, and was pretty good with regards to my grades. A few months in I just started feeling huge constipation and stomach pains. Some kids thought I was faking it but I wasn't too bothered by that really, I wasn't really interested in their opinions. The main problem I had was with doctors. I mean this is 9 years ago now so I can't tell you what they put me on trying to relieve me of my symptoms, but none of it worked. A good 8-9 months later they decided I'd be better off visiting a doctor a good hour and a bit away, in a childrens hospital.
While this was a bit of a inconvenience for me, they were right. After spending a week inside (and one 12th birthday!) I was diagnosed. If I remember right I was put on azathioprine and started a modulen only diet for 8 weeks. While it wasn't the nicest thing in the world it did make me feel better, for a while at least. The problem was that after a while I would get ill again, as you do, so they'd start the modulen course again. After a while of going on the diet and upping my meds it had got to the point where I was spending 6 weeks well and 8 weeks not eating, so that had to go.
I then started infliximab (remicade is it called in other countries?), which did help for a little while, but again I guess I built up a tolerance towards it, and it just didn't work for long enough.
I'm going to shorten the next couple of years but essentially it's going on infliximab, upping the dose/lowering the time between weeks. Going on roids, that needle I've seen discussed here that you take every couple of weeks. I went through diets, tried getting fit, but nothing really worked. You name it I've probably been on it at some point.
At 19 it was the worst it had been ever. I was struggling to get through college (with a 50% attendance or something, and I never really did stay in the whole day). I couldn't concentrate on anything, didn't allow myself to drive for obvious reasons. Eventually it got to the point where I had to go into A&E. I had doctors monitoring me for a couple of days, having CT scans (or something, I wasn't quite with it that week!) to check the state of my stuff. After a few days they decided it had to be emergency surgery, somewhere near my 20th birthday (within a day or two, I don't remember much).
Spent the next week after it in hospital sleeping, then got allowed to go home. Through all this I managed to get a place at university in Portsmouth, where I'm at now.
In 9 years this is the first I've registered or even looked at a crohns forum. I guess now I'm just confused. I mean apart from the stoma I feel a lot better than I have at any point through my teenage years. But now I just don't know what to do. I'm doing well in my course, learning things and teaching myself things. I've been hitting the gym 3/4 times a week. Eating well. Been social for the first time in a while, going clubs/pubs/out in general. But I still just don't feel right. I guess I'm wary of the fact that I am most likely going to get ill again in future, and that most things I do now won't have much of an impact later on, but I don't really know.
Looking forward to talking to you all and posting here
Sean
I'm glad you found your way here and appreciate you sharing your story!