Here is my story.
I'm Gail (monkey to my Mum), I'm 25 now, first symptoms when I was 15/16ish.
I am apparently very complicated, my GI still says this to every new doc/reg he has!
In the beginning I was diagnosed with UC, put on Pentasa, it seemed to work. I was ok then for a few years so stopped the pentasa and managed without.
Next significant flare, I was 20, I got a referral to a GI who was, quite frankly, hopeless. He sent me for a white cell scan which showed nothing because I'd waited so long I was fine by the time the appointment came. He did start me on a 5ASA med but it wasn't a slow release so did naff all.
Needless to say, I changed GI. The newest one has been quite good, diagnosed me with Crohns, apparently my biopsies shoed the right cell type to be Crohns but in the place you'd expect UC. However, I've not really needed much. My GP has been ok about giving me Pred when I've needed it, I have some pred enemas for when I've been ill. All has been well.
Until 3 months ago. Heres where it gets a little sad. . . .
I saw my GP after my usual trials of the predfoam and diet changes. Got my pred. No change. Begged the GI secretary for an appointment, this was the week after New Year, I was told I could have an appointment in 6 weeks. So I phoned the IBD nurse, (she keeps banging on about how I've got IBS not IBD because I don't get diarrhoea, I can't have crohns etc etc and just doesn't listen to a word I say) she's not my favourite person, but I got an appointment with the consultant the next day-she clearly thought it necessary. The consultant sent me for an x-ray and booked me to go to the hospital for IV steroids. The x-ray showed constipation. Now the GI questions wether I have crohns or not
In my opinion, it's my bodies way of saying, no way am I pushing this crap past that hurty bit of bowel, cos, well, it's going to hurt
So I went to the hospital and was put on 400mg IV hydrocortisone. 3 days later, bleeding has stopped, pooing has started I was put back onto oral preds and sent home a couple days after that.
I managed a week at home totally symptom free. Then I started bleeding again, like, cupfulls of it. With pain, this is new. . . . I then started vomiting. It got to the stage where I couldnt even keep fluids down. So mum contacted the nurse, who wanted me admitted to the hospital again, but there were no beds, so we had to go via A&E. After being asked over 10 times if I was pregnant, having 3 seperate lots of bloods taken, doing 4 pregnancy tests and an abdominal x-ray, I found myself on the ward again. (if anyone is curious, a 25 year old female vomiting does ALWAYS indicates pregnancy, how I love the flow charts we get put through )
72 hours in the hospital vomiting everything I put in, before they decided a fluid drip might be a good option. However, they did blast me with IV steroids again. Had an ultrasound and bloods everyday. All normal. I spent 11 days inside this time. Pain being the main problem as the steroid stopped the bleeding. I'm waiting for the results of an MRI enterocyclowhatsimajig, hassling the secretary again for an appointment. Still not really eating much, tho I can keep small amounts of food down now. 17kg lighter than I was 4 weeks ago, not ideal.
So, I'm hoping to get this last episode fixed pretty soon. And maybe a diagnosis from the doc, am I crohns or UC it seems to change on a weekly basis!! An admission from them that this is more than IBS would be a good start, but we'll take whatever we can get.
I've learned to take mum with me to every appointment-they take me much more seriously with her there, I think thats wrong, but it seems to be the way!
For now, I'm just waiting!! Ahhhh, I do love the NHS!
xxx
I'm Gail (monkey to my Mum), I'm 25 now, first symptoms when I was 15/16ish.
I am apparently very complicated, my GI still says this to every new doc/reg he has!
In the beginning I was diagnosed with UC, put on Pentasa, it seemed to work. I was ok then for a few years so stopped the pentasa and managed without.
Next significant flare, I was 20, I got a referral to a GI who was, quite frankly, hopeless. He sent me for a white cell scan which showed nothing because I'd waited so long I was fine by the time the appointment came. He did start me on a 5ASA med but it wasn't a slow release so did naff all.
Needless to say, I changed GI. The newest one has been quite good, diagnosed me with Crohns, apparently my biopsies shoed the right cell type to be Crohns but in the place you'd expect UC. However, I've not really needed much. My GP has been ok about giving me Pred when I've needed it, I have some pred enemas for when I've been ill. All has been well.
Until 3 months ago. Heres where it gets a little sad. . . .
I saw my GP after my usual trials of the predfoam and diet changes. Got my pred. No change. Begged the GI secretary for an appointment, this was the week after New Year, I was told I could have an appointment in 6 weeks. So I phoned the IBD nurse, (she keeps banging on about how I've got IBS not IBD because I don't get diarrhoea, I can't have crohns etc etc and just doesn't listen to a word I say) she's not my favourite person, but I got an appointment with the consultant the next day-she clearly thought it necessary. The consultant sent me for an x-ray and booked me to go to the hospital for IV steroids. The x-ray showed constipation. Now the GI questions wether I have crohns or not
In my opinion, it's my bodies way of saying, no way am I pushing this crap past that hurty bit of bowel, cos, well, it's going to hurt So I went to the hospital and was put on 400mg IV hydrocortisone. 3 days later, bleeding has stopped, pooing has started
I was put back onto oral preds and sent home a couple days after that. I managed a week at home totally symptom free. Then I started bleeding again, like, cupfulls of it. With pain, this is new. . . . I then started vomiting. It got to the stage where I couldnt even keep fluids down. So mum contacted the nurse, who wanted me admitted to the hospital again, but there were no beds, so we had to go via A&E. After being asked over 10 times if I was pregnant, having 3 seperate lots of bloods taken, doing 4 pregnancy tests and an abdominal x-ray, I found myself on the ward again. (if anyone is curious, a 25 year old female vomiting does ALWAYS indicates pregnancy, how I love the flow charts we get put through
)72 hours in the hospital vomiting everything I put in, before they decided a fluid drip might be a good option. However, they did blast me with IV steroids again. Had an ultrasound and bloods everyday. All normal. I spent 11 days inside this time. Pain being the main problem as the steroid stopped the bleeding. I'm waiting for the results of an MRI enterocyclowhatsimajig, hassling the secretary again for an appointment. Still not really eating much, tho I can keep small amounts of food down now. 17kg lighter than I was 4 weeks ago, not ideal.
So, I'm hoping to get this last episode fixed pretty soon. And maybe a diagnosis from the doc, am I crohns or UC it seems to change on a weekly basis!! An admission from them that this is more than IBS would be a good start, but we'll take whatever we can get.
I've learned to take mum with me to every appointment-they take me much more seriously with her there, I think thats wrong, but it seems to be the way!
For now, I'm just waiting!! Ahhhh, I do love the NHS!
xxx
