3 week hospital vacation - Remicade & Prednisone, suddenly symptoms back

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JLG45
Regular Member


Date Joined Feb 2009
Total Posts : 114
   Posted 3/14/2009 8:56 AM (GMT -6)   
For a 1-1/2 weeks I've been out of the hospital after a 3 week stint were I receive IV steriods ( 60mg Solu-Medrol ), and 2 doses of Remicade.

Apparently my entire colon was inflamed ( Diagnosed with U.Proctitis in July 08 ).

For the last 7 days I was on 40 mg of Prednisone, things seemed to be going well as I was starting to form solid stool and the diarrhea stopped. On Weds I met with the GI doctors and he was hopeful.

This Thursday I tapered down to 35 mg and last night I'm suddenly having very watery diarrhea, and noticing some blood. Last night and early this AM was especially bad.

Oddly enough, prior to going to into the hospital I had tapered down from 40mg --> 35mg of prednisone. Tapered on Thurs, hospital on th Tuesday.

Has this happened to anyone else? I'm debating wether I should hit emergency and this morning went back to 40mg.

My diet has been a low residue, lactose free although I eat like a pig. The only "bad" thing is I've had a beer with lunch...which I don't think is the problem. I might also be eating too much fatty foods. My guess is the reduction in steriods but it does seem like a awfully small amount to trigger flare?

If it continues tonight/tomorrow I'm considering going up to 60mg.

Also, don't know about you guys, but my movements occur around the same time lie clockwork. Eg, at 6am I wake up and hit the can, also around 12am.

Anyone else have similar occurances? Not sure how long it will take Remicade to kick in (if it does), my next infusion is March 30th.

thanks
Jaret

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 3/14/2009 4:28 PM (GMT -6)   
Gosh- 3 weeks in the hospital. Bless your heart. I was in for a week and couldn't stand it. Usually, Remicade takes effect within three months or so. If you have used pred a lot then it takes more of it to work later on. I got to the point where pred would no longer work.

I would talk to doctor and see if he recommends going back up. Have you tried rectal meds?
Jackie, 43
Pancolitis, DX October 06

Lexapro, Colazal 3x3, Synthroid, Protonix, 6MP (100 mg)
Severely Anemic
Prednisone 20mg, Iron, Vitamin D
Surgery almost certain


JLG45
Regular Member


Date Joined Feb 2009
Total Posts : 114
   Posted 3/14/2009 4:39 PM (GMT -6)   
Yup, I'm also using a cort foam enema at night and 5asa suppository in the morning.

this AM I used a 4g salofalk enema which seemed to help.

And yea, 3 weeks was an awfully long time. The hospital almost became my second home.

Jaret

James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/14/2009 4:51 PM (GMT -6)   
i would avoid drinking all kinds of alcoholic drinks as much as possible when you are not in 100% remission.

Ugh. I hated paying for some of my hospital bills but I loved playing xbox in my room since I was alone. I was hospitalized for only for a week but yea. It must have been really hard for you.

I took more than 15 shots of vodka in literally less than an hour and the next day i flared hard with some weird floating stool(with blood)
And I would recommend steaming your veges if you're going to have some. I find that the steamed carrots do me some good when I'm flaring. but broccolis are no good. And some boiled eggs(whites only) should help you get some quality proteins.

wish you good luck.
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. confirmed candida in stool studies.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, licorice root, aloe vera juice, VSL#ds(started 3/10/09)

Started eating dairy and all kinds of cheese again(beginning of March and I'm fine)
in 95% remission, E-mail me if you have any questions about how I achieved my remission.


JLG45
Regular Member


Date Joined Feb 2009
Total Posts : 114
   Posted 3/15/2009 7:56 AM (GMT -6)   
Thanks Jame, I pretty much avoid the booze which is a feat since I was a moderate to heavy beer drinker prior to colitis.

The GI said last week some wings and a beer would not be a problem, he was more concerned with avoiding fatty food. That being said, aside from a beer, or a glass of white wine once a week with dinner I abstain from alcohol. I've been keeping a diary of food and trying to eliminate some of the worst offenders that contain fat.

JLG45
Regular Member


Date Joined Feb 2009
Total Posts : 114
   Posted 3/15/2009 8:21 AM (GMT -6)   
BTW: Anyone smoke cannabis to help with the symptoms of UC? I've read some interesting articles that suggest it promotes gut healing.

James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/15/2009 8:46 AM (GMT -6)   
Haha. yes I have a few times. And just realized that discussion of any illegal drugs is against the forum's policy but since it's about the medical use hopefully moderators can approve of it.
So apparently it helps a bit.
Many people claim that it helped them heal their gut and bring up their appetite. That's probably why there's medical marijuana in California. We UC/crohn's patients can LEGALLY get marijuana and smoke them in Cali.

There's also a drug called, Marinol. Marijuana THC based drug to help UC/crohn's patients.
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. confirmed candida in stool studies.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, licorice root, aloe vera juice, VSL#ds(started 3/10/09)

Started eating dairy and all kinds of cheese again(beginning of March and I'm fine)
in 95% remission, E-mail me if you have any questions about how I achieved my remission.

Missing Key Value : en-US, 736


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16282
   Posted 3/15/2009 2:03 PM (GMT -6)   
I want to try cannibis for my UC. I wish it were legalized in other places besides CA. It's better than taking all these crazy drugs

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December 08 but had symptoms months ago - Treating with Asacol 400mg (9 a day)


James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/17/2009 7:01 AM (GMT -6)   
sicklygirl said...
I want to try cannibis for my UC. I wish it were legalized in other places besides CA. It's better than taking all these crazy drugs


you probably can get some from your friends.
Third time when I tried it last year in May, I overdosed lol.

But I did get formed stools the next day.
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. confirmed candida in stool studies.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, licorice root, aloe vera juice, VSL#ds(started 3/10/09)

Started eating dairy and all kinds of cheese again(beginning of March and I'm fine)
in 95% remission, E-mail me if you have any questions about how I achieved my remission.

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