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Aciestay18
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/4/2007 11:35 AM (GMT -7)   
I was diagnosed with Crohn's when I was 7 years old. I am now 18 years old. I've had 1 surgery to remove an abcess when I was 9 years old. I have also had numerous hospital visits because of my Crohn's. One time I was actually in the hosputal right around Christmas and it was horrible but, the hospital had so many celebrities come and visit us that I even forgot why I was in there. Just a year ago however, I had a really bad flare-up and I ended up in the hospital for a week and the doctors told me about Remicade. My parents told me that it was totally up to me if I wanted to start this medicine. It took me awhile but I eventually said yes. When the nurses were starting the IV, they had all of these different kinds of medicine in needles ready to poke me with them if I had one of the side effects. When the IV first started, I just started crying because I was so afraid that something was going to happen to me. But, luckily it didn't. I've now been on Remicade for just about a year now and I feel great. I feel like I'm a whole new person. I would strongly suggest Remicade for anyone that is battaling Crohn's Disease. It is a miracle worker!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/4/2007 5:00 PM (GMT -7)   
Hi Welcome to HW we are glad to have you and the support is awesome. You were very young to have CD .I was on the Rem. for about 6 months I am happy to hear that you are doing good on it.I also had a abcess removed and landed in the hospital last Christmas not fun but at least I got threw the present thing.Wonderful to hear some good results with the Rem. it healed my fistula so was very happy about that. lol gail

HuskerFan
Regular Member


Date Joined May 2007
Total Posts : 79
   Posted 11/4/2007 5:35 PM (GMT -7)   
Hi there....

I can't believe that you have had this disease for 11 years. I will tell you that I have meet people in my local support group that have had Crohns since they were teenagers..and I have gotten soo much help from them....in my opinion they are the experts...moreso that the doctors.

I have been on Remicade since May....and I was just newly diagnosed in January...however been having problems since 2004..it just took the medical community 2 plus years to figure it out. I think it is a great drug....when it finally kicked in for me....I was like...."Gosh I don't remember the last time I felt this good"....so I am all for it...even is the side effects are kinda scary.

Take care...
Mis-diagnosed for two years--doctors thought I had RA!

Fistua surgeries in Sept 2006,Dec 2006 and Aug 2007
Centon placed in fistula track during last surgery..permanent open wound
Finally diagnosed w/CD & Fistulizing Disease in Jan 2007
Currently taking Remicade since May 2007


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 11/4/2007 7:44 PM (GMT -7)   
hello aciestay18. welcome to our little corner of the web. (well PETERS corner) . glad the remicade is working for you. unfortunatley it does not work for everyone.
randynoguts 



     http://www.geocities.com/randynogutsweb/


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 11/4/2007 8:40 PM (GMT -7)   
I would like to welcome you,I am glade that you found us and I am glade that the Remicade is working for you as well.Remicade did not work for me but I know a lot of people that are on it and has worked well for them.I hope that you stick around you are welcome any time.
Curley
.........
 


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 531
   Posted 11/4/2007 9:14 PM (GMT -7)   
Welcome! So glad you are feeling great now. I was allergic to remicade after getting only 3 infusions. So I just started humira 2 weeks ago and so far no reaction.
DIANNE
Diagnosed at age 19 with CD.
3 small bowel resections, 1 for perforation, 2 for strictures 
 


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 11/5/2007 4:14 AM (GMT -7)   
Hi and Welcome. I am glad Remicade is working for you. I have been on Remicade for over 2 years.
and enjoying remission. Stick about if you have any questions feel free to ask.
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.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


april07
Regular Member


Date Joined Nov 2007
Total Posts : 30
   Posted 11/5/2007 5:47 AM (GMT -7)   
HuskerFan how long did it take for the Remicade to kick in? I am new to the Remicade world and I am starting to feel better but still have a lot of bad days. I started in July of this year.
Thanks

Bhibatsu
New Member


Date Joined Apr 2007
Total Posts : 2
   Posted 11/5/2007 8:12 AM (GMT -7)   
i dont know anything about remicade. i was diagnosed with chrons disease when i was 19. i lost about 35 pounds of healthy muscle in my first month and had ulcers in mainly the large but also small intestintes. western doctors told me there is no cure and to take anti enflammatories everyday for the rest of my life. i realized they didnt know what they were talking about when i asked them how should i change my diet, and they said no change required. i searched out chinese doctors, but only to little help, in the beginning. then i found a very special chinese doctor, a 7th generation home taught one, one of his forefathers was the private physician for the emporer of china at some point. he taught me what to eat, and what exercises to do. i've never take remicade or any other drug, but within 2 years i was fully cured and all symptoms disappeared for good. i'd recommend reading up about pranayama, yoga, or chee kung, hei kung, raw foods, daniel reed's the tao of health sex and longevity has some points on colitis, devendra vora's health in your hands 1 and 2. chrons disease is very easy to cure, it just requires a change in diet and some exercises.
"Truth is my weapon, Virtue my strength, Virtue must be practiced without hesitation or quibble" Arjuna
"Emancipation is the only goal of Man" Bhishma
"Abandon all varieties of religion and just surrender unto Me. I shall deliver you from all sinful reaction. Do not fear." Lord Krsna, Bhagavad Gita As It Is Macmillan edition 1972


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/5/2007 8:42 AM (GMT -7)   
Well Bh,
That is all nice and I hope it continues to works for you. But I feel your use of the word "cure" is a bit inflammitory on here given the past history of that word on this website and this disease.


Forum Moderator 
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...

Post Edited (MMMNAVY) : 11/5/2007 8:51:35 AM (GMT-7)


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 11/5/2007 9:14 AM (GMT -7)   

 

 

          Hello, and welcome to HealingWell to both of our new members. I'm glad the 'cade is very effective for you. I want to try it, but I don't qualify from the severity of my bowel disease ( mild to moderate..). I'm gonna try & talk my pain doc into though from the standpoint of my arthritis, which can be pretty severe (its flaring now).

      Its always nice to hear some success stories!

 

    Sincerely,

    Matthew

     DX UC in Feb 1992. Dxed with CD in o8/93. Living with this DD a lot longer!

 

 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 11/5/2007 9:29 AM (GMT -7)   
Welcome!!! you have such a great outlook, glad you are here.
 
it is always great to hear how well Remicade is working... it is my next step and I am still not sure if I want to make that step :-)  
 However, I also don't want to take entocort forever
 
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 11/5/2007 10:33 PM (GMT -7)   
glad to hear you are doing well. keep up the positive attitude. with that said, i apologize for being a doom sayer now. hopefully some on told you it is a matter of time before your body begins to build up antibodies to it and it no longer becomes effective. i started remicade shortly after it became available. i took it for many years. it wasnt until about this time last year that it started to lose its potency and effect for me. for some people it can happen in a few months, others, like myself, over the span of a few years but it will happen. from my own personal experience with remicade i now highly doubt its efficacy. here is why - it is supposed to prevent fistualas. why then did i develop one from my colon to my bladder requiring necessary surgery and subsequently the removal of 8 inches of my sigmoid colon? at the time i was feeling fantastic. i had just returned from a 2 week surf trip in costa rica. i thought my crohns was under control. in fact it had gotten worse - the disease in my colon had spread and it got so bad it ate through the lining of my colon. i truly believe that it just masks the symptoms. every time i got an infusion i felt a lot better. i felt stronger too and i had more energy. i noticed i made gains at the gym in my weights. so it is with caution that i write my experience to you about this drug. just cos you feel good doesnt mean the disease has been arrested. stay on top of it. i no longer believe this to be the wonder drug i once did and was lead to believe it was. but remember, this is my opinion based on my experiences.


enjoy your good health now. take advantage of it.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
been on basically every med available, currently on colozal & 6-mp
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon

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