Hi, i'm new to this site! it's been great so far finding out about everyone elses experience(s) with crohns.
my name is Josh, i'm 15 and live in the uk.
since september i had been dealing with weight loss and feeling sick when eating (and sometimes being sick). we went to the doctors, who said i was "just skinny" which my mum did not believe - and neither did i!
so we went to another doctor, who just observed my weight for about 2 months, before referring me to a gastroenterologist at the local hospital. at the first meeting with him, he asked if we had been told what i "might" have - said no. he said he was 90% sure I had crohn's disease, and the reason it had taken this long to get to that conclusion was the fact that i had different symptoms than normal - no diarrhoea - just nausea and weight loss. Then he said i will have to have a colonoscopy to confirm the diagnosis, but they couldn't do it there, i would have to have it done at birmingham. So a few weeks later i went for the colonoscopy. when i woke up i was in agonising pain - and could barely move. (after very painful movements to get onto the X-ray trolley/bed) the doctors said i had a perforation in my bowel and would need surgery. (not that i remember any of this! parents informed me afterwards...)
i just remember being told we were going up to the theatre and then having a mask put over my face. woke up a few hours later..dozing in and out of consciousness.
the surgeons knew the surgery was healing well after 5 days, and so i was "signed off" the surgeons "list", and onto the gastro team's "list". after a week or two, the central line in my neck "gave up" (as apparently they have a limited life), and the doctors needed to decide what to do next. It was either to have an ng tube put in, or a hickman line(spelling?) put into my chest - which i was not keen on. so they decided on the ng tube - if i could tolerate it. which i did - luckily! after a few days they had slowly increased the ML/H enough so that it would only be on for 12 hours a day - while i'm sleeping. a couple of weeks later (5 weeks after initial colonoscopy!!), i was allowed home. so at home i'm having the overnight feed every night, and my medication - azathioprine and omeprazole. Every 8 weeks i'm supposed to have a infusion of Infliximab(remicade), but the last couple of infusions have been brought forward slightly because the effects (being hungry!) wore off. Thanks for reading and would love to hear others' stories! Josh
my name is Josh, i'm 15 and live in the uk.
since september i had been dealing with weight loss and feeling sick when eating (and sometimes being sick). we went to the doctors, who said i was "just skinny" which my mum did not believe - and neither did i!
so we went to another doctor, who just observed my weight for about 2 months, before referring me to a gastroenterologist at the local hospital. at the first meeting with him, he asked if we had been told what i "might" have - said no. he said he was 90% sure I had crohn's disease, and the reason it had taken this long to get to that conclusion was the fact that i had different symptoms than normal - no diarrhoea - just nausea and weight loss. Then he said i will have to have a colonoscopy to confirm the diagnosis, but they couldn't do it there, i would have to have it done at birmingham. So a few weeks later i went for the colonoscopy. when i woke up i was in agonising pain - and could barely move. (after very painful movements to get onto the X-ray trolley/bed) the doctors said i had a perforation in my bowel and would need surgery. (not that i remember any of this! parents informed me afterwards...)
i just remember being told we were going up to the theatre and then having a mask put over my face. woke up a few hours later..dozing in and out of consciousness.
the surgeons knew the surgery was healing well after 5 days, and so i was "signed off" the surgeons "list", and onto the gastro team's "list". after a week or two, the central line in my neck "gave up" (as apparently they have a limited life), and the doctors needed to decide what to do next. It was either to have an ng tube put in, or a hickman line(spelling?) put into my chest - which i was not keen on. so they decided on the ng tube - if i could tolerate it. which i did - luckily! after a few days they had slowly increased the ML/H enough so that it would only be on for 12 hours a day - while i'm sleeping. a couple of weeks later (5 weeks after initial colonoscopy!!), i was allowed home. so at home i'm having the overnight feed every night, and my medication - azathioprine and omeprazole. Every 8 weeks i'm supposed to have a infusion of Infliximab(remicade), but the last couple of infusions have been brought forward slightly because the effects (being hungry!) wore off. Thanks for reading and would love to hear others' stories! Josh