Crohns Disease Question- Help please

Finch

absolutebounder wrote: »

Sorry not the best typist and so typos creep in.. British approach seems to be to operate far more often than is USA. A good friend died after her operation. Prior to that she had seen something about cholamine phosphate and its use in crohn's but her consultant said he had never heard of it and later said it wasnt available in the UK.

I'm so sorry about your friend- I can imagine this must be an incredibly emotive subject for you. While operations can be (and often are) curative for UC, this is not so for Crohn's, and none of the consultants I know operate on Crohn's patients unless absolutely necessary.

I've never heard of cholamine phosphate in Crohn's, but there are some new biologics out, but getting them depends on severity and NICE guidelines because they are incredibly expensive. In that respect the Americans (those who can afford the insurance) are luckier than us. That said, I think we have the most amazing health service, accessible to all, and I would hate for this country to adopt the American 'ok for the rich' situation.

absolutebounder

Finch wrote: »

I'm so sorry about your friend- I can imagine this must be an incredibly emotive subject for you. While operations can be (and often are) curative for UC, this is not so for Crohn's, and none of the consultants I know operate on Crohn's patients unless absolutely necessary.

I've never heard of cholamine phosphate in Crohn's, but there are some new biologics out, but getting them depends on severity and NICE guidelines because they are incredibly expensive. In that respect the Americans (those who can afford the insurance) are luckier than us. That said, I think we have the most amazing health service, accessible to all, and I would hate for this country to adopt the American 'ok for the rich' situation.

I am not knocking the health service as i too think it is fantastic, well most parts anyway. How can doctors and consultants keep up with the vast array of new medical journals and reports if they work 70 odd hours a week? I always advise anyone with a serious illness to research as much as possible about it.
With reference to the cholamine phosphate we just found on google (and I am boogered if I can find it now) that said it was effectice. It does seem to have good reports for auto immune problems and AFAIK its not expensive.
My friend was cremated on what would have been her 44th birthday. prior to dying her son had been called in 3 times after ops to say goodbye to her and each time she pulled through. Not nice for a 13 yr old.

415SanFran

IBS is the name given when they can't find anything. IE, all blood tests come back normal.

This was after talking to my GP. At that point I had not had any tests.

susiesusiesue

I have it,,,have to go to Barts Hospital for treatment, but it is the best thing that has happened to me,,,
I go every 8 weeks for Infliximab invusion,,,the drip takes 2 hours, then an hour aftercare. It stops all the symptoms that same day, I am off painkillers now, after 15 years of hell with this disease, in and out of hospital on drips for 3 weeks at a time,,,,I couldnt get treatment local to me so have to travel 55 miles,,,,but it really is working, I would advise anyone with this to ask about this treatment, its new, Ive been on it for 9 months now, but have not had to stay in hospital all this time

megc_2

OP- your DH may be entitled to ESA (If he doesn't work at all) as someone else suggested, and possibly also DLA (regardless of whether he is working or not). If you have children, are you claiming Child tax credits? And, if you pay rent and council tax, you may also qualify for some housing and council tax benefit, if your income is low due to his inability to work regularly.
Hope this helps- as previously suggested, the NACC website is very helpful in it's benefits information and advice, particularly in terms of claiming DLA with crohn's or UC.
I do hope your DH's condition improves quickly- I remember well those days, as I was virtually housebound, in fact bathroom bound for a year before they sorted me out with some effective treatment, and it was awful. Now, it only returns every so often just to remind me it is still there, but I can cope with it, and am able to work full-time again.

DING_DONG_4

Hey, I too have had crohn's for 15 years plus and have tried all manner of treatments.

I have also been having Infliximab on 8 weekly infusions and it is by far the best treatment for me.

I have been having it for about 4 years now, and guess I was kind of a guinea pig. I now have it over 2 hours, but have been told it is being trialed in places to be given half hourly!

This would be great hth