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Crohn's Disease Forum » Your Story » Success Stories » All hail the makers of Remicade!


02-04-2014, 03:06 PM   #1
KitPierre
 
Join Date: Feb 2014
Location: Edmonton, Alberta
All hail the makers of Remicade!

Hi All! I am a total newbie to this forum (&any like its kind). To be honest I refused to be part of any 'cronies club'. This is a fairly new diagnosis and I was having slight acceptance issues. In July 2013 I was a completely healthy, active and social 25 year old working toward a Communications Degree at a local university -totally in love with life. My initial 'symptoms' yielded numerous diagnoses. It wasnít until I landed in the OR for an emergency appendectomy that I was tentatively diagnosed with Crohns Disease. The surgeon noted that my appendix was fine (although he did remove it) but that my intestines were very inflamed. Fast forward to August 2013, my first colonoscopy, which confirmed the GI's suspicion of CD. I cried. A lot. My GI prescribed Prednisone, 40mg. The side effects greatly outweighed any improvement, which in fact was nil.. Next was Imuran, 150mg, again no improvement in fact my condition worsened. From August until December I spent many weeks in hospital. I had fistulas which caused 5 abscesses (one the size of an orange). I landed in the OR, again to have them removed - the team of doctors assigned to my case said I was hours away from going septic. At this point my GI pushed for a bowel resection. Mentioning that there was a treatment available for people with severe CD and that once I was recovered from the surgery I would start it straight away. I went in for the surgery. I refuse sugar coat it; the recovery was horrible. I got very sick, contracted C-diff while in hospital and the pain, the pain was unbearable. All the time my GI was very supportive and encouraging, promising relief from this miracle drug "Remicade". I had my first infusion January 17th and my second February 03rd.... I donít want to jinx it but I feel human again! I noticed an improvement 2 days after my first infusion. Miracle drug is right. Iím still cautious with what I eat and can tell if Iíve had something that irritates my CD but from where Iím sitting right now I feel very confident that with the Remicade and diet I can have a very normal and pain free life. All hail the makers of Remicade!
02-04-2014, 03:59 PM   #2
mish2575
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Join Date: May 2013

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Remicade was AWESOME! Stick with it as long as you can.

I switched after about 10 years because I had stopped it twice (1st time for lack of insurance and 2nd time for breastfeeding) and my doctor wanted to play it safe with Humira instead of risking a reaction from built up anti-bodies after stopping Remicade. Humira does not work nearly as well for me. I'm going to ask to switch to Cimzia next month.
02-07-2014, 12:31 AM   #3
wilee320
 
Join Date: Feb 2014
Location: pensacola, Florida
Glad to hear your doing well Kit, here is my bit on remicade. I found out I had Crohn's when I was about 21-22. I had lost about 20lbs and every hospital said I just had a stomach virus, nothing serious because I was too young to have anything bad. This went on for about 2 months. Finally, my parents called a gastroenterologist at a local hospital and he happened to be on call at the ER & he told them to make me come in. He diagnosed Crohn's and I was in the hospital for almost 3 weeks. They told me I needed to have a procedure that would have me wear a bag around the rest of my life. Look here, at 22 THAT WASN'T HAPPENING !! I had girls on my mind and a future of embarrassment trying to explain that thing. I know it's silly, but at 22 that's where I was. After release from the hospital and everyone mad at me for not caring about my health, my mother came across an article about a test drug they were using to fight Crohn's or IBS. She contacted my doctor and asked if I would be a candidate for the drug study. Dr. James Smith in Pensacola Florida was my savior. After looking into the study he said YES !! and got me into the program. I went to Atlanta GA, 3 times a week for the drug study and got IV infusions for a blind drug study. Dr. Smith was curious and did a colonoscopy to see if anything had changed since the drug test started. ( When released I was taking Prednizone(sp?) and like 3 other pills a day. At the drug study I had to stop all of them.) After the colonoscopy he told me, "Your getting the real thing, not a placebo.) My Ulcers had cleared up and my intestines looked pink and fresh. Turns out the test drug evolved into Remicade. I continue to get Remicade every 8 weeks and for the last 16 years I have been medication free except for Remicade. People ask , "so does it make you feel better ?" My reply is this, it doesn't make me feel better, but when I don't get it I can tell. About a week before treatment I start to get the "Crohn's gut" and it goes away as soon as I get the treatment. I went a week over 1 time due to insurance reasons and OMG I could tell I needed it !!
I know this is a bit more commentary than needed but, I am so happy that Remicade is a help and I hope more people can experience the freedom it provides. Cheers to you !!
02-13-2014, 03:07 PM   #4
KitPierre
 
Join Date: Feb 2014
Location: Edmonton, Alberta
@wilee320.... your comment brought me to tears. Such a brilliant success story - the kind that makes me all tingly inside! I hope that I will have the same experince with remicade... 16 years that's amazing! Thanks Much for sharing! Cheers to you my friend!
02-13-2014, 07:57 PM   #5
rrhood1
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Join Date: Oct 2013
Location: Didsbury, Alberta

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∑ Stelara
I agree with both of you - Remicade is a miracle drug. I'm hoping to get good news after my colonoscopy at the end of February.
__________________
Alison

Dx: Crohns - 2010
Dx: Severe cervical spondylosis/foraminal stenosis, ruptured discs
Dx: Severe lumbar ruptured discs
Dx: thyroid cancer - 2 surgeries - done with
Rx: Remicade, Methotrexate, Lyrica, Butrans patch
Vitamin D, C, B, calcium
02-13-2014, 08:35 PM   #6
Jim Byrnes
 
Join Date: Feb 2014
Location: Huntington, New York
Glad to hear all of you are feeling better with remicade I go in the morning to get my injection. It comes at a good time I'm in the middle of a bad flare up I have been diagnosed with Crohn's for three years to make a long story short my doctors thought I would have surgery with in a month after the news. Well many remicade treatments and all kinds of meds I have been able to avoid surgery. So lets all hope that the remicade continues to work for all of us . Good luck to you all
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