Hi 
By the way, if my name is in any way familiar to you, you are imagining things... <_<
Annoying emoticons familiar as well? Imagining that, too... >_>
Actually, it's not likely you will recognise me, but given that I recognise a couple of usernames, they'll probably recognise me in turn.
Anyway, this is my first post. Diagnosed with Crohn's 12 years ago at the age of 25. Could not have had a milder start. Diarrhoea 1-2x a day, absolutely nothing else. At first I put it down to Christmas excess, since it started soon after Christmas Day, but when it didn't go away my mum got me to make an appointment. I saw the one GP in the land who didn't brush me off with "LOL, IBS, come back in 5 years' time if you're still having problems", but actually ordered blood and stool tests. The next tests were a colonoscopy and small barium follow-through, and I got a diagnosis of Crohn's disease.
The diagnosis puzzled me more than anything. I was not remotely upset or angry. Just remember thinking that the diarrhoea would go away at some point and that would be the end of it.
Literally could not have got it more wrong if I had tried. Long story short, I have never even been in remission since then, let alone had the disease f*** off for good. It remained mild for five years; chronic but mild, with little pain or discomfort and diarrhoea 2-3x a day.
I relapsed in the mid 2000s, but it was not a typical presentation, and so I did not recognise it as a Crohn's flare. The main symptom was fevers - very bad fevers, not wussy low-grade stuff here. No cause of them was ever found, but in retrospect I do think it was the Crohn's because I had other signifiers of inflammation too, such as high platelets, anaemia, etc. In 2007, a colonoscopy showed severe disease, but not much was done other than putting me on steroids and Imuran.
After a couple of years the fevers stopped, but I was never the same as before them. Plus my baselines symptoms were worse, but not so much that I couldn't live with them, eg having diarrhoea 5x a day, plus some discomfort after meals.
In 2009 I worsened again, but not in the same way as before. Hard to describe the symptoms, because in a couple of ways it sounds like an improvement when it really wasn't. For example, becoming more prone to constipation. That led to the occasional nightmarish bout with faecal impaction; and no more shall ever be said of that again. Pain was worse, fatigue was worse. In 2010 another colonscopy showed more severe disease and again, not much was done about that either, except to put me on more meds which didn't work.
I was really unhappy with that hospital and ended walking out of there. The trouble is I was quite ill really. A few months later I gave in, went to my GP (who's great, by the way) and asked for a referral to another hospital. I'm still at that hospital... the consultant is very good, the IBD nurse: yeah, let's not go there.
To cut a desperately tedious story short, my Crohn's is not one whit better. I developed a stricture in the terminal ileum which led to obstructions. But I could not have a resection, because my entire colon was affected, meaning no healthy tissue to connect to. I have been on Remicade for a year and it's done diddly-squat. Steroids are the only med which have pulled me out of acute flare-ups and that's good and bad: bad because it's only delayed the surgery I'm beginning to desperately want.
Surgery in my case would involve removing the colon and rectum and having a permanent ileostomy.
I still don't really accept it's come to that, but I have to. There are other things I could try, but see, the thing is - I'm not prepared to. I have literally run out of patience. I was interested in trying anti-MAP antibiotics at one point; I can't bothered anymore, even though my consultant - while not enthusiastic about them - was willing to give them a go.
And don't even mention diet to me. Not to be an arse, but just... please don't. I do know all about the different diets and it's not for me.
And finally; I'm female, 37 (ancient!) and from the UK. My apologies for inflicting this long and boring post upon you. I just wish I could do this to this disease:
:voodoo:
By the way, if my name is in any way familiar to you, you are imagining things... <_<
Annoying emoticons familiar as well? Imagining that, too... >_>
Actually, it's not likely you will recognise me, but given that I recognise a couple of usernames, they'll probably recognise me in turn.
Anyway, this is my first post. Diagnosed with Crohn's 12 years ago at the age of 25. Could not have had a milder start. Diarrhoea 1-2x a day, absolutely nothing else. At first I put it down to Christmas excess, since it started soon after Christmas Day, but when it didn't go away my mum got me to make an appointment. I saw the one GP in the land who didn't brush me off with "LOL, IBS, come back in 5 years' time if you're still having problems", but actually ordered blood and stool tests. The next tests were a colonoscopy and small barium follow-through, and I got a diagnosis of Crohn's disease.
The diagnosis puzzled me more than anything. I was not remotely upset or angry. Just remember thinking that the diarrhoea would go away at some point and that would be the end of it.
Literally could not have got it more wrong if I had tried. Long story short, I have never even been in remission since then, let alone had the disease f*** off for good. It remained mild for five years; chronic but mild, with little pain or discomfort and diarrhoea 2-3x a day.
I relapsed in the mid 2000s, but it was not a typical presentation, and so I did not recognise it as a Crohn's flare. The main symptom was fevers - very bad fevers, not wussy low-grade stuff here. No cause of them was ever found, but in retrospect I do think it was the Crohn's because I had other signifiers of inflammation too, such as high platelets, anaemia, etc. In 2007, a colonoscopy showed severe disease, but not much was done other than putting me on steroids and Imuran.
After a couple of years the fevers stopped, but I was never the same as before them. Plus my baselines symptoms were worse, but not so much that I couldn't live with them, eg having diarrhoea 5x a day, plus some discomfort after meals.
In 2009 I worsened again, but not in the same way as before. Hard to describe the symptoms, because in a couple of ways it sounds like an improvement when it really wasn't. For example, becoming more prone to constipation. That led to the occasional nightmarish bout with faecal impaction; and no more shall ever be said of that again. Pain was worse, fatigue was worse. In 2010 another colonscopy showed more severe disease and again, not much was done about that either, except to put me on more meds which didn't work.
I was really unhappy with that hospital and ended walking out of there. The trouble is I was quite ill really. A few months later I gave in, went to my GP (who's great, by the way) and asked for a referral to another hospital. I'm still at that hospital... the consultant is very good, the IBD nurse: yeah, let's not go there.
To cut a desperately tedious story short, my Crohn's is not one whit better. I developed a stricture in the terminal ileum which led to obstructions. But I could not have a resection, because my entire colon was affected, meaning no healthy tissue to connect to. I have been on Remicade for a year and it's done diddly-squat. Steroids are the only med which have pulled me out of acute flare-ups and that's good and bad: bad because it's only delayed the surgery I'm beginning to desperately want.
Surgery in my case would involve removing the colon and rectum and having a permanent ileostomy.
I still don't really accept it's come to that, but I have to. There are other things I could try, but see, the thing is - I'm not prepared to. I have literally run out of patience. I was interested in trying anti-MAP antibiotics at one point; I can't bothered anymore, even though my consultant - while not enthusiastic about them - was willing to give them a go.
And don't even mention diet to me. Not to be an arse, but just... please don't. I do know all about the different diets and it's not for me.
And finally; I'm female, 37 (ancient!) and from the UK. My apologies for inflicting this long and boring post upon you. I just wish I could do this to this disease:
:voodoo:
