Re: Re: UC flare, JD

[Guest guest]

Aumesh

I too had pan colitis. Early in the disease process I was able

to benefit from the things I referenced earlier. I don't understand the docs

thinking frankly of taking him off a maintenance drug with pan colitis. I

don't buy a seeing if he needs the med. for safety sake argument if that is

falling on your ears. I heard it too, and suffered much under doctors who

were not well schooled in the disease, particularly this subtype of UC. As I

am sure you know, pan colitis is the most severe presentation that UC offers

to its luck travelers. The name of the game as I understand it is to

maximize the use of the lesser toxic drugs, like maintenance drugs, and hope

that you can minimize the heavy guns like cortisone like preparations,

immunomodulators, & other effective but riskier approaches. ( It does sound

to me that Raj need the pred he is now taking, damn the side effects) A

problem with all immunomodulators used for UC is they take weeks to months

to become effective in the individual if at all. This of course is to long

to wait in an acute flare. I took several maintenance drugs simultaneously

for many years ( a cocktail of sorts), and I am certain that bought me

additional time with a reasonably ok colon. Does removing " roughage " from

the diet help? This was always a help to me. No sense in sending down

sandpaper when the colon is already severely irritated.

Very best of luck to the two of you.

Best

jd, 44

UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04

ston City, IL

krmpotich@...

Re: UC flare, JD

>

> Thanks for your reply JD. We will ask the doc about various options when

we

> meet him on Monday. Raj has the type that affects his entire colon

> (pancolitis). Until 3 weeks ago, he was on the maintenance dose (2, 750mg

> colazal caps/day) and 2-3 BM/day. But all that changed as he came off the

> UC med. Well...

>