Hello Everyone, I'm new to the forum thing, and have been reading your posts for a few years now but here’s my 1st 
I was diagnosed with Crohn's in my terminal Ileum when I was 21 at the beginning of 2009. Previous to this I had Ecoli when I was 13 and never remember my bowels being the same since the Ecoli, I have tended to think this was the cause of Crohn's but my nan died through her bowel rupturing and maybe she had undiagnosed Crohn's??
Ever since then I have been trying to fight this and have been back and to from the hospital ever since with them messing about with different drugs and doses etc.
I understand that Crohn's is a very complex disease and every situation is different and unpredictable but for some reason I'm finding it hard have any faith in that maybe one day I might be in remission from the pain and toilet happenings as everything the hospital has tried seems to go wrong.
Back in 2009 I was initially put on Prednisone and this seemed to settle my Crohn's down for a few months.
But no sooner I was feeling "well" (can’t exactly remember what it should be like to not be in pain and have the runs most of the time) I was back in hospital losing weight and generally feeling rubbish around December time 2009.
Next I was placed on Azathioprine and Pentasa. The azathioprine was a hard one it seems to get at the right levels in my body as one minute the drug was sub-theraputic and the next my white blood cells were too low as soon as they put the dose up.
Anyway to cut a long story short in the space of time Dec 2009 to now I have only recently been on the correct dose of azathioprine and correct me if I’m wrong, is that a hell of a long time??
During this time my Crohn's has fistulised and made a hole into my large bowel I partially blame the hospital for taking so long to get my dose right of azathioprine, currently 200mg.
But guess what!? now the dose is at the right level it isn’t having any impact on my Crohn's, I’m still in heaps of pain, going to the loo god knows how many times in a day and am just really fed up with it!
A few weeks ago the hospital offered me the Infliximab drug or the option of surgery.
This was quite a difficult decision for me as I would love to have the sections removed and in a couple of months be back to normal "whatever that may be" but because I’m a massive whimp and hate hospitals, blood and injections I've opted for the Infliximab.
I’m actually going for my 1st infusion tomorrow; this is probably why I’m here writing this... I’m a little nervous but everyone’s comments on here have really boosted my confidence. Although I’m still a little optimistic that it will actually work as I’ve been told the ulcers will be treated but my hole will quite possibly not, so I may need surgery in the future anyway
Family, work and friends are all really supportive (especially my mum dad and partner) dont know what I'd do without them, but I guess no one really knows what it’s like unless you have Crohn's yourself so any advice please feel free to post.
I currently weigh 13 and a half stone, 3 stone heavier than I should be but everything I try to do to loose weigh just gets in my way for example, dieting; how can someone diet and eat all the healthy fruit and veg when it’s the main thing that upsets Crohn's and 2nd when you’re feeling down and tired from the Crohn's how do you get enough energy to do any exercise??
I feel like I’m going around in circles but it is really getting me down at the moment and I know a lot of people on here would love to have a little extra weigh but I hate being a fatty none of my clothes fit any more and even the surgeon told me I’d need to loose weigh for surgery, so any tips or pointers would be greatly received.
Sorry for going on a bit here but I suppose I should have introduced myself sooner
I was diagnosed with Crohn's in my terminal Ileum when I was 21 at the beginning of 2009. Previous to this I had Ecoli when I was 13 and never remember my bowels being the same since the Ecoli, I have tended to think this was the cause of Crohn's but my nan died through her bowel rupturing and maybe she had undiagnosed Crohn's??
Ever since then I have been trying to fight this and have been back and to from the hospital ever since with them messing about with different drugs and doses etc.
I understand that Crohn's is a very complex disease and every situation is different and unpredictable but for some reason I'm finding it hard have any faith in that maybe one day I might be in remission from the pain and toilet happenings
as everything the hospital has tried seems to go wrong.Back in 2009 I was initially put on Prednisone and this seemed to settle my Crohn's down for a few months.
But no sooner I was feeling "well" (can’t exactly remember what it should be like to not be in pain and have the runs most of the time) I was back in hospital losing weight and generally feeling rubbish around December time 2009.
Next I was placed on Azathioprine and Pentasa. The azathioprine was a hard one it seems to get at the right levels in my body as one minute the drug was sub-theraputic and the next my white blood cells were too low as soon as they put the dose up.
Anyway to cut a long story short in the space of time Dec 2009 to now I have only recently been on the correct dose of azathioprine and correct me if I’m wrong, is that a hell of a long time??
During this time my Crohn's has fistulised and made a hole into my large bowel I partially blame the hospital for taking so long to get my dose right of azathioprine, currently 200mg.
But guess what!? now the dose is at the right level it isn’t having any impact on my Crohn's, I’m still in heaps of pain, going to the loo god knows how many times in a day and am just really fed up with it!
A few weeks ago the hospital offered me the Infliximab drug or the option of surgery.
This was quite a difficult decision for me as I would love to have the sections removed and in a couple of months be back to normal "whatever that may be" but because I’m a massive whimp and hate hospitals, blood and injections I've opted for the Infliximab.
I’m actually going for my 1st infusion tomorrow; this is probably why I’m here writing this... I’m a little nervous but everyone’s comments on here have really boosted my confidence. Although I’m still a little optimistic that it will actually work as I’ve been told the ulcers will be treated but my hole will quite possibly not, so I may need surgery in the future anyway
Family, work and friends are all really supportive (especially my mum dad and partner) dont know what I'd do without them, but I guess no one really knows what it’s like unless you have Crohn's yourself so any advice please feel free to post.
I currently weigh 13 and a half stone, 3 stone heavier than I should be
but everything I try to do to loose weigh just gets in my way for example, dieting; how can someone diet and eat all the healthy fruit and veg when it’s the main thing that upsets Crohn's and 2nd when you’re feeling down and tired from the Crohn's how do you get enough energy to do any exercise??I feel like I’m going around in circles but it is really getting me down at the moment and I know a lot of people on here would love to have a little extra weigh but I hate being a fatty
none of my clothes fit any more and even the surgeon told me I’d need to loose weigh for surgery, so any tips or pointers would be greatly received.Sorry for going on a bit here but I suppose I should have introduced myself sooner
