01-18-2013, 09:22 PM   #1
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Help please

I had a colonoscopy Monday and was told that I had a stricture. My doc did biopsy to see if inflammation or scar tissue. And was told that I might have to go on remicade or have surgery depending on the results. I was dx with crohns 01/11. I have been reading about remicade (side effects, price). Can someone please help me it seems so scary to think about all of this? I have an appt with my on the 31st. I would be going next but I'm going to Disney world. Just scared and don't really know what to expect from this information I received. From what I have read remicade is very expensive.
01-18-2013, 09:38 PM   #2
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My daughter, age 14, just had her 6th treatment of Remicade with no side effects. It seems to be working, along with Asacol.

In some cases Remicade can heal fissures, and many have had very successful surgeries if needed. The doctor can see the stricture to see if it can be healed.

You can read a great thread about Remicade, that I just read this morning under Treatments: Remicade/Infliximab. It is written by someone on this forum and very helpful. I wish I would have read it before we started the Remicade, because we were very nervous about it too.

I hope you have a good vacation.

do you have diet restrictions or other meds you are on?

It does cost about $12,000 a treatment for us. maybe because it is at a childrens hospital. Our ins. covers it after we meet a deductible.
Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
01-18-2013, 09:43 PM   #3
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I have just had my first Remicade infusion and it went very well.
It is something I had great concerns about but was left with no choice.
Fortunately the government pays through the insurance I have paid into for many years without claims.
It is very expensive and it costs $4000+ for each infusion.
If you are not insured there are programs offered by the drug company that makes it.
After only one treatment I already feel better, so there is something to it beyond my comprehension.
I fought off this treatment for almost a year till the GI said its either Remicade or Humira
so I was checkmated and had to give in.
Now I am glad I have taken the plunge.
Remicade can be a way of avoiding certain surgeries and is known for its good effect on fistulas.It does seem to stop the Crohn's symptoms.
I am sure there will be others on the forum with greater experiences than I who will be along with their experiences.
There is also a Remicade sub forum you might find helpful.
Like many drugs there are known side effects which the Remicade coordinator has told me can affect 10% of people. So that leaves 90% of us that are likely to benefit from it.
It is a big decision though for anyone to make.
The trouble with surgery is that it does not stop the Crohn's from progressing.
Hope this information will be helpful to you.
I live in Canada by the way so things may be different for you in Texas.
Feel better soon
Hugs and best wishes
01-18-2013, 09:43 PM   #4
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I'm also on Remicade (900mg/8wk). It has done wonders for my symptoms. Don't read too much into the spec sheet of Remicade. They have to give you worse case scenarios for legal protection. If you read the spec sheet of Tylenol, you be concerned as well.

I say take a deep breath and initiate the Remicade process. It sounds scarier than it is. I finally have a Sed Rate under 10.

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