Hi everyone, I'm Charlotte, new to the forum but unfortunately not new to Crohn's. Here is a brief rundown of my story...
I'm a 23 yr old, diagnosed when I was 11 = NIGHTMARE puberty. Ended up being tube fed into my stomach at about 15, turned out to be the best decision to keep my nutrition up during that time. That and the wonderful Elemental diet which I somehow managed to put up with for a few months!
Started on Pentasa, to Azathioprine, to Methotrexate (all interspersed with Pred. courses) then found a miracle drug in the form of Infliximab (remicade). Kept me well enough to get me through A levels and first year at uni...but then I got a bad skin reaction to it
Next step was inevitably Humira but by this point I was too far gone to respond well to it.
So next step was a colonoscopy to see what was going on - unsuccessful because of a stricture preventing the camera getting through - urgh! So a resection was really my only option. Plan was to have 2 sections removed at the end of my small intestine and start of colon. So I went in, started to recover well but then took a turn for the worse - turned out to be 2 leaks where my bowel had been rejoined. Resulted in emergency surgery to take out the 'middle bit' and an emergency ileostomy. I was devestated!
Following that I then got pneumonia and was in for another 2 weeks, dropped 2 stone and lost virtually all my muscle. This was a few months ago and now I'm well on the road to recovery. Hopefully the ileostomy is only temporary but to be honest I'm so glad not to have Crohn's symptoms now that it doesn't really bother me now. I would like to wear a bikini again one day though! If only to show off my awesome scars.
Short story is, after being reasonably well on meds for so long the surgery came as a bit of a shock. I know I had a bad experience but I'm determined for it not to happen again! So I'm looking for advice on how to keep myself as well as possible now I have my shiny new, no-so-diseased bowel. Doctors are all very well but it's crohnies that offer the best experiences I find.
Hope I can help some of you too!
I'm a 23 yr old, diagnosed when I was 11 = NIGHTMARE puberty. Ended up being tube fed into my stomach at about 15, turned out to be the best decision to keep my nutrition up during that time. That and the wonderful Elemental diet which I somehow managed to put up with for a few months!
Started on Pentasa, to Azathioprine, to Methotrexate (all interspersed with Pred. courses) then found a miracle drug in the form of Infliximab (remicade). Kept me well enough to get me through A levels and first year at uni...but then I got a bad skin reaction to it
Next step was inevitably Humira but by this point I was too far gone to respond well to it. So next step was a colonoscopy to see what was going on - unsuccessful because of a stricture preventing the camera getting through - urgh! So a resection was really my only option. Plan was to have 2 sections removed at the end of my small intestine and start of colon. So I went in, started to recover well but then took a turn for the worse - turned out to be 2 leaks where my bowel had been rejoined. Resulted in emergency surgery to take out the 'middle bit' and an emergency ileostomy. I was devestated!
Following that I then got pneumonia and was in for another 2 weeks, dropped 2 stone and lost virtually all my muscle. This was a few months ago and now I'm well on the road to recovery. Hopefully the ileostomy is only temporary but to be honest I'm so glad not to have Crohn's symptoms now that it doesn't really bother me now. I would like to wear a bikini again one day though! If only to show off my awesome scars.
Short story is, after being reasonably well on meds for so long the surgery came as a bit of a shock. I know I had a bad experience but I'm determined for it not to happen again! So I'm looking for advice on how to keep myself as well as possible now I have my shiny new, no-so-diseased bowel. Doctors are all very well but it's crohnies that offer the best experiences I find.
Hope I can help some of you too!
