- Joined
- May 16, 2011
- Messages
- 11
Hi guys! I've been lurking here for a while, I finally pulled my finger out and joined, so here's my story (in short, I'd be here forever if I wrote it out in detail!) 
I was diagnosed in 1998 at age 11, after 3 or 4 months of symptoms. I went to 3 or 4 GPs, with one finally clicking to what my symptoms may have been caused by. He was an absolute godsend - he phoned a paediatric gastroenterologist straight away and I was in hospital that night. Crohns was confirmed 2 days later after a endoscopy/colonoscopy. I started on the IV hydrocort/oral prednisolone and sulfasalazine regime as well as a low residue diet, that lasted me in good stead for a year. In 1999 I ended up with a flare that resulted in a 4 week hospital stay...not the best of fun, especially considering I was in hospital for my birthday! Meds/nutrition were TPN (ew!) and then a low residue diet, more IV hydrocort/oral prednisolone and this time the sulfasalazine went and cyclosporin came in.
Cycolsporin worked really well for about 2 years, until in 2001 I ended up in hospital with a small bowel perforation. When I first got to Emergency, it was dismissed as Crohn's pains but both Mum and I knew that it definitely wasn't. The doctors wouldn't listen to either of us saying that it was something more serious, so Mum requested a transfer to the other paediatric hospital (further away, but where my gastroenterologist was) and off I went - my first and only ambulance ride so far I got there, saw my gastro immediately and had an xray to confirm a bowel perf, and was in theatre almost immediately after that. They went in laproscopically first, and after draining nearly 2L of goo, they couldn't find the perforation, so had to go for the laparotomy...yay! They still couldn't find the perforation, so assumed it had self-closed, and off I went to PICU. I was in hospital for 4 weeks in total and was discharged on Prednisolone, Imuran and an elemental diet...ew!
Imuran worked really well, I got through Year 12 exams with no hassles (we all thought I was going to flare from stress), and got into Biotechnology at uni, and saw my paed gastro for the last time. All in all, Imuran got me 7 years of medicated remission, it was absolute bliss and I think I started to take it all a little for granted, forgetting that there would come a time that it would stop working. And that it did, big time in 2009! I ended up in Emergency, and was admitted straight away. I got a new gastroenterologist (as I was wayyy too old for my old paed gastro!) who is just lovely, my diagnosis of severe Crohn's Colitis was confirmed, and I was started on IV hydrocort, IVABs, sulfasalazine and maxolon, plus increasing my Imuran dose. After 3 weeks there was no improvement at all, so the idea of Remicade was thrown around. It took over a week to get approval (the longest week of my life!), but eventually had my first infusion - it literally worked overnight! I wasn't by any means back to normal, but I'd gone from going to the loo every hour, to 3-4 times a day. Remicade worked really well for about 6 months, until I had an anaplyhactic reaction to it within 5 minutes of the infusion starting. It was pretty scary and I was devastated, as it meant I had to go to Humira.
I started Humira in June/July last year, and it worked probably half-heartedly for the first 6 months, however just before Christmas I found that it started to work to it's full effect. I'm just coming up to 6 months of full effect now, fingers crossed it will keep working for much longer despite how much I hate those needles, as Humira is pretty much the end of the line for Crohns meds in Australia as far as I'm aware.
So that's me in a nutshell I'm now 24 and loving life despite Crohn's and those evil Humira needles, I've started competing in triathlons (never thought I'd be able to be away from the loo for that long!), applying for jobs I never thought I would, and slowly finishing my nursing degree, with the aim to work in palliative care once I've finished.
Catie
I was diagnosed in 1998 at age 11, after 3 or 4 months of symptoms. I went to 3 or 4 GPs, with one finally clicking to what my symptoms may have been caused by. He was an absolute godsend - he phoned a paediatric gastroenterologist straight away and I was in hospital that night. Crohns was confirmed 2 days later after a endoscopy/colonoscopy. I started on the IV hydrocort/oral prednisolone and sulfasalazine regime as well as a low residue diet, that lasted me in good stead for a year. In 1999 I ended up with a flare that resulted in a 4 week hospital stay...not the best of fun, especially considering I was in hospital for my birthday! Meds/nutrition were TPN (ew!) and then a low residue diet, more IV hydrocort/oral prednisolone and this time the sulfasalazine went and cyclosporin came in.
Cycolsporin worked really well for about 2 years, until in 2001 I ended up in hospital with a small bowel perforation. When I first got to Emergency, it was dismissed as Crohn's pains but both Mum and I knew that it definitely wasn't. The doctors wouldn't listen to either of us saying that it was something more serious, so Mum requested a transfer to the other paediatric hospital (further away, but where my gastroenterologist was) and off I went - my first and only ambulance ride so far
I got there, saw my gastro immediately and had an xray to confirm a bowel perf, and was in theatre almost immediately after that. They went in laproscopically first, and after draining nearly 2L of goo, they couldn't find the perforation, so had to go for the laparotomy...yay! They still couldn't find the perforation, so assumed it had self-closed, and off I went to PICU. I was in hospital for 4 weeks in total and was discharged on Prednisolone, Imuran and an elemental diet...ew!Imuran worked really well, I got through Year 12 exams with no hassles (we all thought I was going to flare from stress), and got into Biotechnology at uni, and saw my paed gastro for the last time. All in all, Imuran got me 7 years of medicated remission, it was absolute bliss and I think I started to take it all a little for granted, forgetting that there would come a time that it would stop working. And that it did, big time in 2009! I ended up in Emergency, and was admitted straight away. I got a new gastroenterologist (as I was wayyy too old for my old paed gastro!) who is just lovely, my diagnosis of severe Crohn's Colitis was confirmed, and I was started on IV hydrocort, IVABs, sulfasalazine and maxolon, plus increasing my Imuran dose. After 3 weeks there was no improvement at all, so the idea of Remicade was thrown around. It took over a week to get approval (the longest week of my life!), but eventually had my first infusion - it literally worked overnight! I wasn't by any means back to normal, but I'd gone from going to the loo every hour, to 3-4 times a day. Remicade worked really well for about 6 months, until I had an anaplyhactic reaction to it within 5 minutes of the infusion starting. It was pretty scary and I was devastated, as it meant I had to go to Humira.
I started Humira in June/July last year, and it worked probably half-heartedly for the first 6 months, however just before Christmas I found that it started to work to it's full effect. I'm just coming up to 6 months of full effect now, fingers crossed it will keep working for much longer despite how much I hate those needles, as Humira is pretty much the end of the line for Crohns meds in Australia as far as I'm aware.
So that's me in a nutshell
I'm now 24 and loving life despite Crohn's and those evil Humira needles, I've started competing in triathlons (never thought I'd be able to be away from the loo for that long!), applying for jobs I never thought I would, and slowly finishing my nursing degree, with the aim to work in palliative care once I've finished.Catie
