Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

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NYCFAN 04/30/2012

I was diagnosed with UC almost 17 years ago...yikes so long ago. The very first flare was my worst ever.

These days the flares are less intense not too disruptive. However, still there and I never really feel as if I'm in remission.

My GI switched me from Colazal to Apriso a couple of months ago - can't say I've noticed a difference.

Usually I have resorted to prednisone to control any nasty flares however my GI does not want to rely on pred any longer.

I had my colonoscopy this past Friday - my GI is concerned that my UC is still active and has suggested since we've tried everything else that my remaining options are Remicade or surgery.

I really did not want to go with biologics. Wondered if it has helped others? side effects? what's it like going for the infusion? any info you can share would be great.

deleted_user 09/19/2012

Remicade was great for eliminating my son's pain. It didn't control his disease. It does work fo rmany people. I hope it works for you too!

deleted_user 09/19/2012

I was on remicade for a couple of months but, unfortunately, it didn't work long term. I wish it had worked because I did not experience any side effects. I ended up having a bad flare at the end of June and in August had my colon removed (after 11 years dealing with UC). Hopefully you will have better luck with it as I have heard many succcess stories. best of luck,

steve77 09/19/2012

I was in the hospital in 1/2011 and contemplating surgery, when my doctor suggested trying Remicade. That was 20 symptom free (knock wood!) months of remission ago. I know it does not work for everyone and I have to deal withe the fact it might not work forever but it has been great for me. Try it definetely. Good luck get well!

deleted_user 09/24/2012

Note: I had hemolytic anemia with my UC, and that, I believe, led to dangerous side effects.

I tried Remicade before I had to go the surgical route. I would recommend it as I would prefer everyone get the chance to avoid surgery for as long as possible, but I have a big caveat with that. If your UC causes you to lose a large amount of blood, rectally and/or by hemolytic anemia, be very careful! Remicade can make the bleeding worse in a certain number of cases, including (I believe) mine. Good luck and get well soon!

DivineSilence 09/25/2012

My son has been on Remicade for almost 2 years now and it works fairly well.... He has it done at the outpatient clinic at the hospital. They put in an IV and he sits there for about 2 hours.... that's it. he is now considering surgery though because the Remicade has not relieved all of his symptoms and it is VERY expensive..... about $7000 a treatment. Even with insurance we are paying about $500 every 8 weeks and if he has the surgery he could be symptom free with no medication for many years. There are cheaper options..... Cimzia is similar to Remicade but you can self inject it at home and the cost is about half of the Remicade.....

rcaschbacher 09/26/2012

I have had 3 infusions after alternative medicines failed to control my UC. It was basically Remicade or surgery for me and my Doctor highly suggested Remicade. I am glad that I gave it a try. It is the only drug that has been able to really decrease my pain. It has even settled some of my 'going' issues.

Remicade does sound scary, but many people are able to use it without serious side effect or allergies. I was worried/scarred for my first infusion. I was READY for my second infusion as the positive effects had started to wear off, and I was looking forward to my third infusion. It takes a little time to really build up in your system, but I say go for it.

Good luck,
Rachel

deleted_user 09/29/2012

My 10yo daughter has been on Remicade since February. She was on steroids and azathioprine but it was not working and she hates taking pills. She loves the remicade and she has not had any side effects. However, she recently saw her GI who is concerned because we have not seen much growth and she is the size of an 8 yo. She still has some stomach discomfort and "going" issues but she seems to tolerate it well as it was 10 times worse. Not sure where we are going to go from here as they are thinking of increasing her remicade or putting her on something else. An upper and lower will hopefully help give us a better picture.

Jessica-Cornejo 10/02/2012

I have been on Remicade for a while. I was also at the point where it was surgery or this. And I am so glad i opted for this. I am starting to worry that it isnt working as much as it use to. but i couldnt leave my house before i was going like 20 times a day. now i am down to only a few times a day.

deleted_user 10/04/2012

I've had 3 infusions of remicade so far and it has really helped. I have no pain and no urgency. I dont have any noticeable side effects and the iv is painless and actuall quite relaxing.

AuntieLisa 10/14/2012

I was diagnosed about 13 yrs ago. Quickly was at moderate to severe disease and gastro wanted me to start the Remicade to put off necessity of surgery. He said it will either fix you or make it worse really fast. Mine got worse really fast and I checked myself into hospital over Thanksgiving for IV nutrition due to complete blockage. A week later I had the bowel resection anyway, so for me, it did not have the desired effect. Hope this helps with your decision.

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