01-23-2012, 09:20 AM   #1
chrisnsteph1022
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Day 3

I had my first Remicade infusion on Friday. Last week, I was going to the bathroom 15-20 times/day, blood off and on, exhausted from being up every hour through the night, in pain all day, nauseous every morning.

Three days makes such a difference! I slept through the night last night for the first time in weeks. I went to the bathroom 4 times yesterday. No blood. No nausea. Still having some pain, but not bad enough to take pain pills. I'm just using a heating pad when needed. That mouse juice is a miracle drug! After 14 months of flaring, I finally see a light at the end of the tunnel!
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Stephanie
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
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01-23-2012, 09:29 AM   #2
PaulPhoenix
 
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Location: Wiltshire, England, United Kingdom
Aww that's fantastic!! Must be a huge relief!

P
01-23-2012, 10:26 AM   #3
littlemissh
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Fantastic news!
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
01-23-2012, 11:22 AM   #4
Lisa
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woo hoo - great news!!!!! Let it only get better and better!!!
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
01-23-2012, 11:37 AM   #5
Crohn's 35
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Nice to see someone excited, and hope it continues for ya!
01-23-2012, 11:38 AM   #6
chrisnsteph1022
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I'm paranoid about getting drug-induced lupus, but it's probably a silly fear. I just can't imagine joint pain so bad that I can't move. How long does it usually take for that to develop, if you're going to get it?
01-23-2012, 11:48 AM   #7
ThanksP
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YAY!!!!!! I'm SOOOOO happy to read this! You must feel like a million bucks now.


I'm kind of worried about the joint pain as well. I've noticed some mild-medium pain in my hands and knees for the past week or so. For now I'm going to chalk it up to all this rainy weather.
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** Remicade since Sept. 2011
01-23-2012, 12:04 PM   #8
moogie
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I'm very happy for you, This is from the Rat man, I love the juice too.

DOn't worry so much about the l;upus thing. For one thing it's a very rare thing and two if you think to much about it you'll go crazy.

If it happens it happens. for now you feel great so enjoy it!! Deal with tomorrow tomorrow.

Enjoy!!
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I'm the Rat Man!!
DX - CD summer of 1987
Current Meds -
Remicaide
Getting Remicade every 8 weeks
Getting 5mg now. full dose. cost 5500$ )
Purinathol 75mg a day


3 resections
2 colostomy
One Ileostomy
Back to normal since May 2015
On Remicade Since April 2011 I am alive again!
01-23-2012, 12:12 PM   #9
Fuego
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That is so great. My son just had his 3rd infusion and has no more syptoms. He's gaining weight and finally feeling great. Don't worry about the lupus it's very rare. Good Luck I hope you feel better and better every day.
01-23-2012, 01:09 PM   #10
Terriernut
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I am soooo happy to hear your news!!!!! May you stay well on it for a loooooonnnnngggggg time!!!
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Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
01-23-2012, 02:01 PM   #11
SarahAnne
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After all of the pain and problems you've been having, that is FANTASTIC news!

Hope it helps for years and years!
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Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
01-23-2012, 02:14 PM   #12
~Manders~
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Happy Dance! Happy Dance!!!!
So glad you are feeling better!!!!
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My Story...
http://www.crohnsforum.com/showthread.php?t=30351
01-23-2012, 02:24 PM   #13
Grumbletum
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Woooooooohooooooooooo! So glad the Mouse Martini is working for you
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
01-24-2012, 10:57 AM   #14
chrisnsteph1022
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The pain did get bad enough for a pain pill yesterday, and today isn't looking much better. But only 4 bathroom trips again yesterday, 5 so far today (one middle of the night). It's a little setback from the past couple days, but still miles ahead of where I was a week ago.
01-24-2012, 06:31 PM   #15
suschex
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I hope today turned around for you! I am so excited for you that there has been some relief after so very long without any! I hope it only gets better and lasts for many years!!!
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Suzanne
Crohn's Disease - October 10, 2011

Current Meds
Prednisone
Entyvio

Past Meds
Humira
Lialda
6-MP
Remicade
Etc.......
01-24-2012, 06:48 PM   #16
Mrs. Concerned
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Hello. How long can a person live with Crohn's without treatment?
My husband says he's had symptoms since he was 19. He is 47 now. He has had one test that says he doesn't have it. But now they want to do another test that is more thorough. He hasn't had the money to pay for it yet. If he's had Crohn's disease this long wouldn't have been diagnose already? Wouldn't they have figured it out by now?
01-24-2012, 11:13 PM   #17
Miss Underestimated
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Hello. How long can a person live with Crohn's without treatment?
My husband says he's had symptoms since he was 19. He is 47 now. He has had one test that says he doesn't have it. But now they want to do another test that is more thorough. He hasn't had the money to pay for it yet. If he's had Crohn's disease this long wouldn't have been diagnose already? Wouldn't they have figured it out by now?
I had it for over 25 years with no treatment - never diagnosed. I finally had a perforated bowel and almost died - they figured it out then. Maybe he has something else if he's gone this long without it blowing up.
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*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
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