Hey!
I'm not entirely sure what I'm supposed to do on this site, but it seems like it could be reassuring at times, and give good advice/let me give advice, so, I thought I'd give it a go
please, if anyone can help me get to grips with this site etc, post in this or something?
Anyway, this is my crohns story.
When I was 11 I became increasingly ill, losing a lot of weight (I got down to a stage where a size 4 (US size 0) was falling off of me and my height of 5'3 well, I haven't grown since) and I was rushing to the toilet every half an hour, also I avoided eating because whenever I did, I got intense stomach pains which would make me cry. I was pretty reserved and shy so didn't tell anyone I had diahorrea until I was sent to the doctors to be treated for anorexia, and by that point they didn't believe me anyway! After a few months of getting worse and worse, ending up off school and unable to get downstairs because I'd be straight back up again, I had a blood test taken by a doctor and was diagnosed with crohns.
After that I got signed into a clinic at Birmingham Children's Hospital where they did colonoscopy's and all that stuff, and said I was one of the worst they'd seen not on medication, which wasn't that encouraging haha I also had some symptoms most of the doctors had only ever read about, yet alone seen them with all the others too, so I had loads of photographs taken for medical journals which upset me because I felt like a freak, but I was glad I could at least help.
After that I got admitted to hospital and I don't remember much of the next few months, other than I only moved from bed to use the toilet, and I had an NG tube put in and was nil by mouth from November - February. I put back on some weight during that time, and was allowed home where I was still tube fed, and bed bound, but it was nice not to be surrounded by screaming babies and the odd teenager in for their stomach pumped (you would not believe how upset it made me that people with health were destroying it like that!) Over that time my parents were told multiple times that I wasn't going to make it, and it was just a case of waiting for organ failure. Luckily, I'm stronger than that
Upon gaining weight, I gained strength etc, and my colon healed slightly. I was put on prednisone, which didn't really work, but it let me go back to school, which I liked. After that I had azathioprine, which also didn't work, then infliximab which was like a magical super treatment which worked so fast I wheeled the wheelchair back out of the hospital after my first treatment I was on that every 8 weeks for a few months, then they tried methotrexate, which worked for a short time, but I ended up back on infliximab again. I didn't mind too much, you get used to all the drips and needles, as I guess loads of you know!
After being on infliximab for a number of years I ended up with side effects such as hair loss and certain deficiencies. (Once I got such a bad infection because of the lowered immune system - and my allergies to penicillin - that I ended up on an antibiotic drip which tissued and burnt the muscle in my wrist and I had to have it in a vertical sling for three days to drain the liquid back out! Funny but painful haha) It also started to stop working, so I was put on 4 weekly infusions, and double the dosage.
During all this time I also had fistulas and other various complications, the fistulas were removed and I ended up just having to cope with the intense backpain and the like haha, but it was all worth it for longer out of the toilet! Which is pretty much what most 15 year olds want haha.
At the age of 17, I got tried on Adaliamab/Humira, which completely failed. Within two months I was admitted to hospital again, and underwent loads of tests, most of which I don't remember because of being so ill and underweight again. The surgeon who did my colonoscopy actually came to tell my parents the results in tears because she thought I was going to die, haha (another one I proved wrong, I guess) but basically when they did the procedure, my colon started to fall apart. She said I'd need an NG tube to get my weight up for surgery, and would need a permanent stoma. I was literally terrified, and cried for hours. Though I quickly realised I'd been told I wouldn't get through before, so I started eating, and forced myself to take small walks. When the nurses weighed me each day, I slowly started to put on weight. By the following Monday I'd put on enough that my doctor allowed me a few more days to try, under close observation of course.
After a few weeks I'd put on enough weight and gained enough strength through exercise that they allowed me home, although I was still on the waiting list for an ileostomy.
My next appointment with my consultant and he said that because of how well I'd done, he was confident that if it was what I wanted, I could have an ileostomy with my colon left in, giving it chance to heal, which I was so happy about, even though it was still going to take up to two years.
Five weeks ago I had the surgery, and managed to eat and drink the same day, and get off of morphine by the following morning, when the surgeon told me I was free to go home as soon as I'd learnt to deal with my stoma. I was really happy, until it dawned on me that I had to deal with a stoma. I hadn't even looked at it.
My boyfriend helped me a lot, as did one of my sisters and cousins. And over the next few days I managed to get walking around, although it hurt so much I couldn't talk whilst doing so, or straighten up (!), and helping empty my bag. On the Friday, I watched whilst a nurse taught me how to empty it, although I was terrified, and thought it was the ugliest thing I'd ever seen
I went home that day, and by the Sunday I was changing the bag myself, with my sister passing me the equipment and a week after that, I was due to be staying with another sister, and her boyfriend, to go to a Blink 182 concert (my favourite band and an early 18th birthday present!), I was desperate to go but still couldn't walk that much, I went anyway, and changed the bag totally alone each day, went to the gig, enjoyed it more than ANYTHING, and since then have felt fine my dissolvable stitches hurt like anything, but whatever, they're almost gone now
I feel loads better already, despite the trip to a&e where they thought I might need surgery to remove some adhesions. I'm glad I had it done, even if I'm still getting used to it, and by no means healthy yet haha. Plan to go to Leeds Festival in August, and all my friends are jealous that I won't need the toilets haha, they're super supportive, which helps a lot
Thanks for reading this anyway, sorry if it was long, I'm not sure how to condense that anymore! Haha. I'd be super happy to talk to some people with similar or even totally different experiences though? x
I'm not entirely sure what I'm supposed to do on this site, but it seems like it could be reassuring at times, and give good advice/let me give advice, so, I thought I'd give it a go
please, if anyone can help me get to grips with this site etc, post in this or something?Anyway, this is my crohns story.
When I was 11 I became increasingly ill, losing a lot of weight (I got down to a stage where a size 4 (US size 0) was falling off of me and my height of 5'3 well, I haven't grown since) and I was rushing to the toilet every half an hour, also I avoided eating because whenever I did, I got intense stomach pains which would make me cry. I was pretty reserved and shy so didn't tell anyone I had diahorrea until I was sent to the doctors to be treated for anorexia, and by that point they didn't believe me anyway! After a few months of getting worse and worse, ending up off school and unable to get downstairs because I'd be straight back up again, I had a blood test taken by a doctor and was diagnosed with crohns.
After that I got signed into a clinic at Birmingham Children's Hospital where they did colonoscopy's and all that stuff, and said I was one of the worst they'd seen not on medication, which wasn't that encouraging haha
I also had some symptoms most of the doctors had only ever read about, yet alone seen them with all the others too, so I had loads of photographs taken for medical journals which upset me because I felt like a freak, but I was glad I could at least help.After that I got admitted to hospital and I don't remember much of the next few months, other than I only moved from bed to use the toilet, and I had an NG tube put in and was nil by mouth from November - February. I put back on some weight during that time, and was allowed home where I was still tube fed, and bed bound, but it was nice not to be surrounded by screaming babies and the odd teenager in for their stomach pumped (you would not believe how upset it made me that people with health were destroying it like that!) Over that time my parents were told multiple times that I wasn't going to make it, and it was just a case of waiting for organ failure. Luckily, I'm stronger than that
Upon gaining weight, I gained strength etc, and my colon healed slightly. I was put on prednisone, which didn't really work, but it let me go back to school, which I liked. After that I had azathioprine, which also didn't work, then infliximab which was like a magical super treatment which worked so fast I wheeled the wheelchair back out of the hospital after my first treatment
I was on that every 8 weeks for a few months, then they tried methotrexate, which worked for a short time, but I ended up back on infliximab again. I didn't mind too much, you get used to all the drips and needles, as I guess loads of you know! After being on infliximab for a number of years I ended up with side effects such as hair loss and certain deficiencies. (Once I got such a bad infection because of the lowered immune system - and my allergies to penicillin - that I ended up on an antibiotic drip which tissued and burnt the muscle in my wrist and I had to have it in a vertical sling for three days to drain the liquid back out! Funny but painful haha) It also started to stop working, so I was put on 4 weekly infusions, and double the dosage.
During all this time I also had fistulas and other various complications, the fistulas were removed and I ended up just having to cope with the intense backpain and the like haha, but it was all worth it for longer out of the toilet! Which is pretty much what most 15 year olds want haha.
At the age of 17, I got tried on Adaliamab/Humira, which completely failed. Within two months I was admitted to hospital again, and underwent loads of tests, most of which I don't remember because of being so ill and underweight again. The surgeon who did my colonoscopy actually came to tell my parents the results in tears because she thought I was going to die, haha (another one I proved wrong, I guess) but basically when they did the procedure, my colon started to fall apart. She said I'd need an NG tube to get my weight up for surgery, and would need a permanent stoma. I was literally terrified, and cried for hours. Though I quickly realised I'd been told I wouldn't get through before, so I started eating, and forced myself to take small walks. When the nurses weighed me each day, I slowly started to put on weight. By the following Monday I'd put on enough that my doctor allowed me a few more days to try, under close observation of course.
After a few weeks I'd put on enough weight and gained enough strength through exercise that they allowed me home, although I was still on the waiting list for an ileostomy.
My next appointment with my consultant and he said that because of how well I'd done, he was confident that if it was what I wanted, I could have an ileostomy with my colon left in, giving it chance to heal, which I was so happy about, even though it was still going to take up to two years.
Five weeks ago I had the surgery, and managed to eat and drink the same day, and get off of morphine by the following morning, when the surgeon told me I was free to go home as soon as I'd learnt to deal with my stoma. I was really happy, until it dawned on me that I had to deal with a stoma. I hadn't even looked at it.
My boyfriend helped me a lot, as did one of my sisters and cousins. And over the next few days I managed to get walking around, although it hurt so much I couldn't talk whilst doing so, or straighten up (!), and helping empty my bag. On the Friday, I watched whilst a nurse taught me how to empty it, although I was terrified, and thought it was the ugliest thing I'd ever seen
I went home that day, and by the Sunday I was changing the bag myself, with my sister passing me the equipment
and a week after that, I was due to be staying with another sister, and her boyfriend, to go to a Blink 182 concert (my favourite band and an early 18th birthday present!), I was desperate to go but still couldn't walk that much, I went anyway, and changed the bag totally alone each day, went to the gig, enjoyed it more than ANYTHING, and since then have felt fine my dissolvable stitches hurt like anything, but whatever, they're almost gone now I feel loads better already, despite the trip to a&e where they thought I might need surgery to remove some adhesions. I'm glad I had it done, even if I'm still getting used to it, and by no means healthy yet haha. Plan to go to Leeds Festival in August, and all my friends are jealous that I won't need the toilets haha, they're super supportive, which helps a lot
Thanks for reading this anyway, sorry if it was long, I'm not sure how to condense that anymore! Haha. I'd be super happy to talk to some people with similar or even totally different experiences though?
x
