REFRACTORY UC

[Guest guest]

Aumesh

I was always schooled that when the bowel is that angry, soft or

runny stools are a help not a hurt. LOTS of blood is a different deal. But

as I said before, if the active bleeding part of the disease is in the lower

bowel.... a little LOOKS like a lot.

In terms of the inflammation, bet the farm on it, it is still there,

alive and well. Internal healing is always very very s l o w, rapid

withdraw (think couple weeks) of aggressive treatment is just plain wrong in

this situation (it sounds like they are NOT doing this!) 6 MP and Remicade

are VERY GOOD but s l o w to take effect (think 4-8 weeks or more

in Raj's case) I don't think you want to keep the gut angry for that long a

time. Cyclosporine is a " rescue " drug someone like pred is " big guns " , for

serious flares. Used in emergencies like this. If you need it to avoid the

surgery........ sure, use it!

I HAD pan (universal colitis) which was refractory (burned out

colitis, steroid dependant, etc) to steroids. I didn't bleed in the end of

the disease like Raj, but felt like hell (ok ...like I always had day 2 of

the 3 day flu) this went on for 2 years. I went from specialist to

specialist, even one guy who only saw colons, he said.......isn't your

colon, keep looking for the right answer, so off I went Finally I said my

life is a wasting away, I have a bad colon that could develop cancer (i had

UC for 25+ years) soooooo, weather or not the surgery would fix the " flu or

fatigue, I decided to get the colon removed. I felt better the day AFTER

major surgery than the previous 700 days!!! I immediately knew it was the

answer.

Oh yeh, I tried 6MP, but had a bad reaction, ended up in the

hospital, even had done a Prometheus pre test for 6MP suitability prior to

taking it. I don;t think that is too common. Bad luck. In my mind anyway,

the only thing you haven't tried medicine wise might be the cyclosporine.

You have even given the medicine time to do its job. But let me repeat don't

judge any of the meds as ineffective if you haven't taken them for 2-4 weeks

MINIMUM. Once in a great while Docs just don't have the right ammo, and the

patient can no longer wait it out. I think their discharging Raj is a good

sign, so is the soft stools over watery ones.

I know you guys have struggled now for weeks, and if it were me I'd

hit it with everything that's available that is short term acting like pred,

hydrocort. enemas, cyclosporine & if that don't get the job done after a few

weeks? Raj may just be better off without the colon.

Best

jd, 44

UC 1973, Jpouch 2000, Pouchitis 2001, PSC 04, Stage 3

ston City, IL

krmpotich@...

Re: What is next?

>

> Thanks JD, , Tim, and Luanne for your help while Raj was admitted to

> the hospital in relation to the flare. Raj is presently on 60 mg/day

pred,

> 100 mg hydrocortisone enemas 2 times daily, 100 mg/day imuran, 1500 mg/day

> Urso, and 6.75 g/day Colazal. Although he was released on last Saturday,

it

> was (and is) not clear if his treatment with the IV pred controlled the

> inflammation or not. We are hoping this week Raj will improve further.

His

> bloody BM freq remains at 8-10/day; however, the stools seem to have

> solidified in last couple of days. Is that a good sign? Blood is still

> there though. In case things do not improve what lies ahead? The doc

talked

> about immunomodulators (6-MP, Remicade and cyclosporine) but these

> treatments seemed not well established and may eventually require

> surgery. I was wondering, if any one on the list had steroid-refractory

UC

> flare and what did they do next. I am also looking into contacting Mayo

> (Rochester) for further advice because Raj already goes there for his

liver

> issues.

>

>

>

> aumesh (father, son Raj -- May '99 AIH, Jan '02 suspect auto cholangitis,

> Sept '02 UC)

>

>

>

>

>

>