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Back from C-scope, bad findings, predisone questions

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Ulcerative Colitis
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Posted 6/14/2013 10:37 PM (GMT 0)
My colitis (if that's what it is) has progressed from left-side-only to pancolitis.

The pics are really, REALLY gross.

My colon looks like road rash...bloody, mangled.

These are some of the words on the report....edema, erosions, erythyma, friability, granularity.

He graded it as SEVERE.

Far cry from mild-mod proctitis on my last scope.

Doc rx'ed me 2x20 mg prednisone to get the inlfammation under control and I will see him in 10 days.

What kind of horrors can I anticipate starting oral pred for the first time?

This is a rescue attempt, I believe.

I will definitely tell him I want to avoid pred as my maintenance drug.

 

Posted 6/14/2013 10:53 PM (GMT 0)
It might not be that bad. My first time was IV in the hospital and the 40mg when I was released. I was hungry and had a little bit of an increased heart rate, which could have been from anemia.

It gets worse the longer I'm on. A lot of the side effects that bother me take a few weeks to show up at least.
Posted 6/14/2013 11:02 PM (GMT 0)
i haven't had issues with prednisone, you will probably have some insomnia and changes in mood, but the longer you are on it, is where the problems come it.
Posted 6/14/2013 11:32 PM (GMT 0)
I like being on pred. And no one will suggest you use it as a maintenance drug. Your job is to use other meds in addition to the pred (and diet changes as you can) to reduce the inflammation and then support the remission.
Posted 6/15/2013 12:19 AM (GMT 0)
When I've been on pred, I've had insomnia, weight gain (not too severe), fatigue, and ridiiiculously increased appetite. Like, eating everything in the house.

It's honestly more annoying than scary, since (as others have already pointed out) it's not a maintenance drug. What were you on before this colonoscopy?
Posted 6/15/2013 12:42 AM (GMT 0)
Before the colonoscopy I was on Asacol 400 3x3. Once the flare started I was told to add Rowasa (was not on it as a maintenance) I quit taking both of them a couple of weeks ago because they increased my pain.

I called the doc literally begging for some pred about a month ago. He refused until a C diff test was done. It was positive. Went on Vancomycin for 10 days with no noticible help.

I pray the pred works QUICKLY.

Posted 6/15/2013 12:43 AM (GMT 0)
I'm sure it impacts everyone differently, however I never seem to have many side effects besides waking up at 4a every morning like clockwork. It also gives me quite a bit of energy and motivation which is a bonus and I don't typically get too tired at night even though I wake up so early. I also seem to lose 10 or so lbs. when I'm on it, most likely because I quit drinking high calories craft beers while on it (no alcohol at all)

I've never been on it for more than 6 weeks so Your experience may be different if you're on it for a longer period of time.

Good luck. Hope it knocks your flare down quickly and don't forget to take maintenance drugs.
Posted 6/15/2013 12:52 AM (GMT 0)
The GOOD news is: they actually sedated me this time. Last time I did not get enough meds to be sedated. This time I was OUT before they even got near me with the scope and woke up in recovery.

Apparently I had fentanyl 225 mcg and versed 9 mg in my IV.

Wonder how that compares to what I had last time?
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