Day 6 of my hospital stay and today I am sssoooooooooooooo busy AND a question for Remicade users

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MTLGUY40
Regular Member


Date Joined Nov 2008
Total Posts : 44
   Posted 11/25/2008 5:20 AM (GMT -7)   
We all know hospitals are not know for their complete efficiency. Yesterday after going NPO for my Gastroscope, they couldn't pull off a small bowel exray in the am.
 
So I have been on clear fluids since lunch and NPO since midnight. Now I have to hope that Radiology gets their act together and calls me at a reasonable time so that I can get the barium into me and xrayed and back to my room for my last chance at remicade..
 
Question: Today they are doubling up on my remicade to 10mg per 10 kilo or for me 1000kg vs the 500 I was on before.(I weigh 200lbs)
 
The 500 that I had before not only did nothing for me including not drying up my fistula, I got sick on it ie a flareup.
 
Has anyone here had any success with the double up?

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 11/25/2008 10:10 AM (GMT -7)   
Hi, Yes in the beginning of this year they double my dose of remicade I am doing fine. It has been a wonder drug for me.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/25/2008 10:20 AM (GMT -7)   
Hi If you are looking for no sucess then I am one that got doubled and took into a major flare and severe cold. Hope you get things done up there at X-ray. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


MTLGUY40
Regular Member


Date Joined Nov 2008
Total Posts : 44
   Posted 11/25/2008 11:07 AM (GMT -7)   
Hi Gail
I didnt understand your comment.
 
Small bowel went well....boy do I process barium quickly! tongue

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/25/2008 1:42 PM (GMT -7)   
Hi I meant that I had the double Remicade and it made me sick so I went off it. They feeding you yet? I guess we will not be worrying about you getting C after your SBFT, Does that mean there are no blockages? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


MTLGUY40
Regular Member


Date Joined Nov 2008
Total Posts : 44
   Posted 11/25/2008 4:28 PM (GMT -7)   
So far no blockages! Those are painful

Got the Remicade at double dosage. No reaction

Had supper and lunch and still on IV but getting my meds by mouth

Tomorrow may be release day!

Good stuff so far...cross my fingers

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/25/2008 4:35 PM (GMT -7)   
Hi Good news and great they are feeding you. Maybe home tomorrow that sounds good or are you hoping for a longer stay ha ha. I am betting you will soon be wanting your own bed. Keep improving. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Julie1014
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Date Joined Oct 2005
Total Posts : 1245
   Posted 11/25/2008 5:20 PM (GMT -7)   
about a year ago my GI increased my Remicade to 10mg/kg every 4 weeks. There are still "bumps in the road," but so far, so good! Good luck to you! Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


MTLGUY40
Regular Member


Date Joined Nov 2008
Total Posts : 44
   Posted 11/26/2008 7:22 AM (GMT -7)   
Good new again
Getting my walking papers this morning.
Taking the prednisone orally and hopefully as I wean off the double dosage remicade kicks in.

My wife will pick me up and its off the the office!

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/26/2008 9:22 AM (GMT -7)   
That's great news! Make sure to take it easy for the next few days..... Hospital stays can be draining. Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


baybegyal
New Member


Date Joined Nov 2008
Total Posts : 6
   Posted 11/26/2008 10:11 AM (GMT -7)   
brilliant news take it easy :)

MTLGUY40
Regular Member


Date Joined Nov 2008
Total Posts : 44
   Posted 11/26/2008 6:10 PM (GMT -7)   
I am being a good boy! Told my partners I was staying away until Monday!

Have been eating a bunch of small meals today and things are quiet! Don't want to jinx myself

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/27/2008 3:25 AM (GMT -7)   
I'm glad to hear you are taking some time off. Make sure to rest and relax. Happy Thanksgiving! Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


gardenlady
Veteran Member


Date Joined May 2003
Total Posts : 3103
   Posted 11/27/2008 9:28 PM (GMT -7)   
I was gonna say -- how are you managing to stay that busy in the hospital? you have got to be more talented than me, because when i was in there...it was the longest freakin' week of my LIFE. when i wasn't having anxiety attacks, i was bored out of my mind. i remember mom picked up "the tommyknockers" at hte library for me, and wouldn't you know, the one stephen king book i could never get into. i still haven't read it. and i have no intention of reading it. not only does it have bad associations, i just could not get into the characters, or the plot, or anything.

of course, i couldn't get on a computer, either. that might have helped chew up some time.
"Let me light my lamp,"
Says the star,
"And never debate
If it will help to remove the darkness."
-- Indian poet, Rabindranath Tagore


MTLGUY40
Regular Member


Date Joined Nov 2008
Total Posts : 44
   Posted 11/28/2008 6:11 PM (GMT -7)   
Well the night before I went in (which was probably hours before on top of everything that was going on I got a stomach flu and was in the washroom all night), I grabbed my laptop from my office, ran to a wireless stop, picked up a wireless USB key for internet access and used my computer off and on all day on the gurney in the ER, in the ER, and in my room there-after.
 
I locked the computer to my bed so no one could grab it without a wire cutter. Doctors were coming in and out all day and they kept me busy with tests pretty much evenly during the stay.
 
My kids and wife came to visit me and of course despite trying to keep visitors away I had some.
 
Also, the trusty blackberry kept me going with emails and games.
 
And finally, the old trusted rent a over priced lousy resolution hospital TV
 
What can I say
 
Feeling much better....still.....Remicade? IV Prednisone????

gardenlady
Veteran Member


Date Joined May 2003
Total Posts : 3103
   Posted 11/29/2008 5:02 AM (GMT -7)   
I always wondered if wireless internet would impede some of the equipment in the ER, like the heart monitors and such. Every medical place you go to here says to turn off cell phones because they'll screw with the heart monitors in particular. Interesting.

Screw renting a hospital TV (that's a new one on me, too). Check out www.hulu.com
"Let me light my lamp,"
Says the star,
"And never debate
If it will help to remove the darkness."
-- Indian poet, Rabindranath Tagore

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