I was diagnosed with Crohn's about 10 years ago when i was about 13 or 14yo and since then i've kept things very private. I've never spoken to anyone with Crohn's or any other IBD before and find it very hard to explain my problems to other people, even my parents. So i apologise if this post is a bit scattered and badly worded in places.
As i say, i was diagnosed in my early teens, although i was very sick throughout my entire childhood the doctors couldn't explain it. The late diagnosis was probably because my main symptom was constipation instead of the usual diarrhea associated with IBD and several early colonoscopies and barium tests came out negative. There wasn't a specific date that i was diagnosed either, the group of doctors i was seeing at the time just sort of gradually came to accept it was Crohn's over a long period of time but i do remember my first course of steroids as a pivotal point in my life. I'm sure others on here can relate to when you start feeling unwell over a long period of time, you don't really know how ill you are until you experience full health again, so being on steroids was a huge shock to me. Suddenly i had the energy to do everything i wanted and more, i felt so great that i joined all the school sports teams (football, tabletennis, golf, even track and field, things i can't even imagine doing now), so imagine how depressed i was to find myself virtually bedridden and housebound just six months later.
Like everyone else with Crohn's i went through the list of drugs trying to find one that worked for me, starting with pentasa and antibiotics. Nothing seemed to work so surgery was suggested as an alternative, i had nothing to lose so i agreed to whatever the surgeon thought necessary. My first major surgery was to bypass my colon completely to give it a break, leaving me with a colostomy.
Things gradually started to improve, i got used to having a stoma and got back into school part time, gaining a few qualifications in the process. I was still trying to find a treatment that worked and i thought i had found the answer with infliximab, the first 3 infusions went without any problems and i was feeling well enough to start looking for a job. I went in to hospital for my 4th infusion when i had an allergic reaction to the drug so the doctors agreed that infliximab was no onger an option for me any longer.
I spent almost a year without any medication at all and i quickly deteriorated in the last month or two, eventually leaving me hospitalized with septicemia. i just felt generally tired and feverish but i could tell that the doctors were really worried about me. Apparently the problem was my colon and there was nothing else that could be done apart from to completely remove it along with a small section of small bowel. Having an ileostomy was no big deal to me, after all i had lived nearly two years with a colostomy. Although the original plan was to reverse the colostomy after 5 or 6 years, in my mind it was allways permanent so i was a little bemused by all the fuss everyone was making.
Since the ileostomy, i haven't had a single problem with my digestive system in years but i have had a lot of probems with the rest of my body. First came the Fistulae then the abcesses which developed into hidradenitis and finally in the last few weeks i've had a lot of joint pain wich the doctor suspects is some form of artharitis, although i'm still waiting on a concrete diagnosis.
Thank you for giving me a place to talk about my problems, i feel so much better already:ysmile:
As i say, i was diagnosed in my early teens, although i was very sick throughout my entire childhood the doctors couldn't explain it. The late diagnosis was probably because my main symptom was constipation instead of the usual diarrhea associated with IBD and several early colonoscopies and barium tests came out negative. There wasn't a specific date that i was diagnosed either, the group of doctors i was seeing at the time just sort of gradually came to accept it was Crohn's over a long period of time but i do remember my first course of steroids as a pivotal point in my life. I'm sure others on here can relate to when you start feeling unwell over a long period of time, you don't really know how ill you are until you experience full health again, so being on steroids was a huge shock to me. Suddenly i had the energy to do everything i wanted and more, i felt so great that i joined all the school sports teams (football, tabletennis, golf, even track and field, things i can't even imagine doing now), so imagine how depressed i was to find myself virtually bedridden and housebound just six months later.
Like everyone else with Crohn's i went through the list of drugs trying to find one that worked for me, starting with pentasa and antibiotics. Nothing seemed to work so surgery was suggested as an alternative, i had nothing to lose so i agreed to whatever the surgeon thought necessary. My first major surgery was to bypass my colon completely to give it a break, leaving me with a colostomy.
Things gradually started to improve, i got used to having a stoma and got back into school part time, gaining a few qualifications in the process. I was still trying to find a treatment that worked and i thought i had found the answer with infliximab, the first 3 infusions went without any problems and i was feeling well enough to start looking for a job. I went in to hospital for my 4th infusion when i had an allergic reaction to the drug so the doctors agreed that infliximab was no onger an option for me any longer.
I spent almost a year without any medication at all and i quickly deteriorated in the last month or two, eventually leaving me hospitalized with septicemia. i just felt generally tired and feverish but i could tell that the doctors were really worried about me. Apparently the problem was my colon and there was nothing else that could be done apart from to completely remove it along with a small section of small bowel. Having an ileostomy was no big deal to me, after all i had lived nearly two years with a colostomy. Although the original plan was to reverse the colostomy after 5 or 6 years, in my mind it was allways permanent so i was a little bemused by all the fuss everyone was making.
Since the ileostomy, i haven't had a single problem with my digestive system in years but i have had a lot of probems with the rest of my body. First came the Fistulae then the abcesses which developed into hidradenitis and finally in the last few weeks i've had a lot of joint pain wich the doctor suspects is some form of artharitis, although i'm still waiting on a concrete diagnosis.
Thank you for giving me a place to talk about my problems, i feel so much better already:ysmile:
