advice / reassurance . . .
I've tried writing this several times and I get halfway and think, man, what am I doing, i'm not that bad, it'll get better . . . . . still advice/ reassurance would be cool
Okies, brief history, I'm 25, was diagnosed initially at 16 with UC, took mesalazine for a few years but came off it cos I was so well. Had a flare at age 20 and got re-referred to GI docs, had a white cell scan like 4 months after a flare up, it, suprisingly showed nothing. Changed my consultant, got a diagnosis of Crohns about 4 years ago but have been really well, a couple of flares fixed with 30mg Pred. Happy days!
Then came December 2010. I got really stressed with loads of things happening and started to feel unwell so changed my diet to 'good only' foods and tried rectal pred foam stuff which usually kills the flare. Eventually got pred from my GP a couple days before Christmas after a bit of a fight. Symptoms-pain, distended tummy, bleeding like 10-15 times a day (but no poo), mucus, tiredness . . . . I started myself on a liquid only diet, knowing the less I bombarded my tummy, the better. The week after new year I managed to get an appt to see the Consultant, he started me on higher dose pred and arranged for me to go into hospital for IV hydrocortisone. I spent a week in and had x-rays which showed 'masses' in my abdomen, had a flexi-sig which they couldn't get in further than 80 cm due to swelling. My consultant is fixated by this idea that I have some irritable bowel symptoms too and seems to shrug everything off as that . . .
I've been out of hospital 12 days now and starting to reduce the pred as instructed. My symptoms are just the same as they were at new year, i'm less tired, but then I'm not going to work again yet. The specialist nurse just suggested I stop eating and take ensure drinks instead and she's going to try to get an appt with the consultant for me.
Now, my bloods are normal, they always are, but the fact that they couldn't get a scope in kinda suggests theres a problem . . . . am I wrong to want them to have a proper look inside? Is a flexi-sig enough, should they be looking deeper? There is clearly an awful lot of inflammation but they don't seem too bothered about it!
The 'masses' in my x-ray are apparently just poo that can't get out, hello, if i'm so inflamed it can't get out, thats probably why I'm having the problems??
I see my insides as one long tunnel, if it gets blocked, it's going to hurt right, and they can't get in with a scope, what makes them think anything can get out?
I'm feeling a little abandoned by the docs, they just sent me home to manage myself and, well, I'm not any better than before so very frustrated!
Any suggestions about what I should be asking for in terms of tests/treatments? I don't want to cause the docs trouble, but at the same time, theres only so much blood one can lose . . . . .
Ooops, that was kinda long, hoping it makes sense tho
Now
I've tried writing this several times and I get halfway and think, man, what am I doing, i'm not that bad, it'll get better . . . . . still advice/ reassurance would be cool
Okies, brief history, I'm 25, was diagnosed initially at 16 with UC, took mesalazine for a few years but came off it cos I was so well. Had a flare at age 20 and got re-referred to GI docs, had a white cell scan like 4 months after a flare up, it, suprisingly showed nothing. Changed my consultant, got a diagnosis of Crohns about 4 years ago but have been really well, a couple of flares fixed with 30mg Pred. Happy days!
Then came December 2010. I got really stressed with loads of things happening and started to feel unwell so changed my diet to 'good only' foods and tried rectal pred foam stuff which usually kills the flare. Eventually got pred from my GP a couple days before Christmas after a bit of a fight. Symptoms-pain, distended tummy, bleeding like 10-15 times a day (but no poo), mucus, tiredness . . . . I started myself on a liquid only diet, knowing the less I bombarded my tummy, the better. The week after new year I managed to get an appt to see the Consultant, he started me on higher dose pred and arranged for me to go into hospital for IV hydrocortisone. I spent a week in and had x-rays which showed 'masses' in my abdomen, had a flexi-sig which they couldn't get in further than 80 cm due to swelling. My consultant is fixated by this idea that I have some irritable bowel symptoms too and seems to shrug everything off as that . . .
I've been out of hospital 12 days now and starting to reduce the pred as instructed. My symptoms are just the same as they were at new year, i'm less tired, but then I'm not going to work again yet. The specialist nurse just suggested I stop eating and take ensure drinks instead and she's going to try to get an appt with the consultant for me.
Now, my bloods are normal, they always are, but the fact that they couldn't get a scope in kinda suggests theres a problem . . . . am I wrong to want them to have a proper look inside? Is a flexi-sig enough, should they be looking deeper? There is clearly an awful lot of inflammation but they don't seem too bothered about it!
The 'masses' in my x-ray are apparently just poo that can't get out, hello, if i'm so inflamed it can't get out, thats probably why I'm having the problems??
I see my insides as one long tunnel, if it gets blocked, it's going to hurt right, and they can't get in with a scope, what makes them think anything can get out?
I'm feeling a little abandoned by the docs, they just sent me home to manage myself and, well, I'm not any better than before so very frustrated!
Any suggestions about what I should be asking for in terms of tests/treatments? I don't want to cause the docs trouble, but at the same time, theres only so much blood one can lose . . . . .
Ooops, that was kinda long, hoping it makes sense tho
Now