- Joined
- Mar 23, 2014
- Messages
- 11
Hi all,
I'm new to this forum, but had UC diagnosed in 2003, so this is my 11th year living with it.
I'm lucky for the most part, I have long periods in remission where I have no symptoms, then I get a tummy bug and go downhill fast, usually ending up in hospital for a couple of weeks. I've had 5 stays in hospital now, first time was worst with toxic mega colon as I didn't know what it was and almost died.
Since then, I've radically changed my diet and have been well since 2010, was starting to think I wouldn't get ill again, but now I have two children (1 and 4 years old) and they pick up germs so easily! We all had the sick bug 4 times in January, and my system just couldn't take it.
It has eased off, I was going 10-15 times a day I. jan/February now only 4/5, so I'm 75% better, now it's the pain that is so severe, and the worry of how it's affecting the kids (I'm a stay at home mum at the mo, luckily as I'm too ill to work!) they watched a lot of DVDs in Feb!
It's always after I eat, so I don't enjoy food at present, just had a lovely roast at my mother in laws but spoiled it by having to spend an hour in agony in the loo!
My husband isn't being very supportive I'm afraid, he says 'I don't see why you don't just have an operation like that footballer and you'll be totally cured and never ill again' I keep telling him that I don't think that's true for everyone, particularly not those without access to millions of pounds to spend on treatments and specialists, less so for those with two small children to look after on their own!
Still, it is something I may have to consider, but I don't think I'm ill enough yet, though it is affecting my quality of life.
What made me most worried today was I asked my little boy why he'd been crying a lot today (he was a bit hysterical all day over little things) and he dais he's had a pain in his tummy all day like Mummy, so he's noticing how I am, maybe I just need stronger painkillers but that's just masking the problem, not curing it.
Anyway, I'm seeing a specialist tomorrow, after booking the appointment in January! I've seen the GP who did the usual and prescribed 40mg Prednisolone as they don't know what else to do, the IBD nurse prescribed me azathioprine over the phone but I won't take it as I think I'll catch more things off the kids and my quality of life will go further downhill!
Anyway, sorry if this is all coming out in a tumble, I've had very little sleep due to going to the loo at 4am and also a teething baby up a couple of hours too, plus my boy got up at 6am!
Nice to 'meet' everyone and I'll be reading through the rest of these posts this evening!
I'm new to this forum, but had UC diagnosed in 2003, so this is my 11th year living with it.
I'm lucky for the most part, I have long periods in remission where I have no symptoms, then I get a tummy bug and go downhill fast, usually ending up in hospital for a couple of weeks. I've had 5 stays in hospital now, first time was worst with toxic mega colon as I didn't know what it was and almost died.
Since then, I've radically changed my diet and have been well since 2010, was starting to think I wouldn't get ill again, but now I have two children (1 and 4 years old) and they pick up germs so easily! We all had the sick bug 4 times in January, and my system just couldn't take it.
It has eased off, I was going 10-15 times a day I. jan/February now only 4/5, so I'm 75% better, now it's the pain that is so severe, and the worry of how it's affecting the kids (I'm a stay at home mum at the mo, luckily as I'm too ill to work!) they watched a lot of DVDs in Feb!
It's always after I eat, so I don't enjoy food at present, just had a lovely roast at my mother in laws but spoiled it by having to spend an hour in agony in the loo!
My husband isn't being very supportive I'm afraid, he says 'I don't see why you don't just have an operation like that footballer and you'll be totally cured and never ill again' I keep telling him that I don't think that's true for everyone, particularly not those without access to millions of pounds to spend on treatments and specialists, less so for those with two small children to look after on their own!
Still, it is something I may have to consider, but I don't think I'm ill enough yet, though it is affecting my quality of life.
What made me most worried today was I asked my little boy why he'd been crying a lot today (he was a bit hysterical all day over little things) and he dais he's had a pain in his tummy all day like Mummy, so he's noticing how I am, maybe I just need stronger painkillers but that's just masking the problem, not curing it.
Anyway, I'm seeing a specialist tomorrow, after booking the appointment in January! I've seen the GP who did the usual and prescribed 40mg Prednisolone as they don't know what else to do, the IBD nurse prescribed me azathioprine over the phone but I won't take it as I think I'll catch more things off the kids and my quality of life will go further downhill!
Anyway, sorry if this is all coming out in a tumble, I've had very little sleep due to going to the loo at 4am and also a teething baby up a couple of hours too, plus my boy got up at 6am!
Nice to 'meet' everyone and I'll be reading through the rest of these posts this evening!
