Soldato
I love watching it on the screen. Have had several now. Excellent viewing!
Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
Soldato
This is all that gets me, I have a flareup every year or so but the fatigue is with me all the time, no matter how much sleep you have or the healthy diet and exercise it just never goes away.
Man of Honour
I hope so, I've lost 3 good friends to it.
Same for me I get Fatigue and cramps especially in the evening. Stopping taking the Azothiroprene has helped but it's still there.
I was due a camera session on Friday but have refused this one at the moment as since stopping the Azothiroprene I have been well enough to go out and do things. Each time I have had the camera before it has caused me to flare up so would rather wait and enjoy things for a while.
Update from me:
Azathrioprine(sic) seems to be working. I'm only going to the loo 3-4 time a day now and its changed colour to a more brown rather than cardboardy colour. And no panic dashes
I've managed to drop my steroids down to 20mg now too so hopefully the diabetes will cool off (as normal) The 5-6 times a night peeing and the 4-6 litres of water I've been guzzling, Together with the blurred vision is doing my head in...
Azathrioprine(sic) seems to be working. I'm only going to the loo 3-4 time a day now and its changed colour to a more brown rather than cardboardy colour. And no panic dashes
I've managed to drop my steroids down to 20mg now too so hopefully the diabetes will cool off (as normal) The 5-6 times a night peeing and the 4-6 litres of water I've been guzzling, Together with the blurred vision is doing my head in...
Soldato
Have any of you guys looked at fecal transplants ? There was also a really intresting study that was saying that in a small trial some patients with mild symptoms were helped hugely after non-harmful parasites were introduced to their gut.
I think the basic premise was that the human gut has evolved to be challenged by parasites. When it is not in some people the autoimmune system gets confused and turns on itself.
My dad died of lower intestinal issues so you all have my sympathy and very best wishes.
I think the basic premise was that the human gut has evolved to be challenged by parasites. When it is not in some people the autoimmune system gets confused and turns on itself.
My dad died of lower intestinal issues so you all have my sympathy and very best wishes.
AFAIK fecal transplants have evidence supporting their use in C.diff patients rather than Crohn's...
I guess Crohn's patients with narrowing in places etc.. might well have too much of certain types of bacteria in different places in the gut - maybe it could help in some way...
I really hope the anti-MAP vaccine offers a cure
I guess Crohn's patients with narrowing in places etc.. might well have too much of certain types of bacteria in different places in the gut - maybe it could help in some way...
I really hope the anti-MAP vaccine offers a cure
Soldato
I've been on Azathioprine a few times for a year or so and I've not noticed any difference in my well-being (I know it takes months and months to start working), it just sucked you couldn't drink!
I've seen my Asacol tablets hanging around on a colonoscopy a few times
Strangely enough I got told not to bother any more with the mesalazine/asacol 'useless drug' the consultant said* - stuck me on Azothiroprene
also he wasn't too fazed about alcohol - am allowed a drink or two
(*this was in relation to crohn's - might well be different for UC)
also he wasn't too fazed about alcohol - am allowed a drink or two
(*this was in relation to crohn's - might well be different for UC)
Just had my Patency Capsule this morning in prep for Video Capsule next week, been admitted 4 times into hospital by ambulance with chronic stomach pain, the last was 60 hours with nil by mouth and a NG tube draining my stomach. CT scan shows tightening of the rings in my small bowel causing blockage. Hope all goes ok or ill be losing some of it 
Most recent colonoscopy for me was last year, which marked my third time.
Nothing too unpleasant in terms of pain but usually just very uncomfortable. I can't remember biopsies being taken with me but they said that they did.
As a UC sufferer of 15 years the news of a vaccine raises a slight bit of interest but nothing more. I've heard of cures on and off for 15 years so I'm not too hopeful (but deep down I obviously am thinking this is the time...).
Nothing too unpleasant in terms of pain but usually just very uncomfortable. I can't remember biopsies being taken with me but they said that they did.
As a UC sufferer of 15 years the news of a vaccine raises a slight bit of interest but nothing more. I've heard of cures on and off for 15 years so I'm not too hopeful (but deep down I obviously am thinking this is the time...).
I have Chrons now, originally diagnosed as UC.
I had a consultant in Manchester who swore that Prednisilone was the only drug I needed to keep me going
eek - funny how different they/we can all be.I have Chrons now, originally diagnosed as UC.
I had a consultant in Manchester who swore that Prednisilone was the only drug I needed to keep me going
Pred is supposed to treat the flair up. Asacol is supposed to keep you from flairing.
Soldato
Wonder how this cure is coming on! Past 3 days spent in bed/toilet!! UC really rocks!!
Really hope there is a cure found in the next year or so. My partner has Crohns (originally diagnosed as UC) and it is an awful condition to have.
What really narks me off though is that even though it is a life-long condition and is acknowledged as this by the NHS, Crohns/UC sufferers still have to pay for prescriptions.
She takes several meds a day and has been in for various things like colonoscopies and tests over the past few years.
Have all of my fingers, toes and anything else crossed in the hope there is a breakthrough soon.
What really narks me off though is that even though it is a life-long condition and is acknowledged as this by the NHS, Crohns/UC sufferers still have to pay for prescriptions.
She takes several meds a day and has been in for various things like colonoscopies and tests over the past few years.
Have all of my fingers, toes and anything else crossed in the hope there is a breakthrough soon.
I get all mine paid for by the MOD I would hate to think how much all the drugs I have had over the years would have cost....
It is rubbish that they are not free for suffers it is a long term permanent illness they should be free.
It is rubbish that they are not free for suffers it is a long term permanent illness they should be free.
Soldato
Prednisolone messes with my head, gives me atrocious mood swings, crushing depression & very short tempered, i dread having to take them when ever i have a flare up, some times i think the meds are worse than the UC.