• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

New user!

Hey everyone! I am a new user and wanted to share my story. I was 9 years old and was in the hospital for 2 weeks before doctors figured out why I was having pain in my rectum. It turns out I had a rectal abscess and they drained over 1/2 of a cup of fluid out of it. This lead to the discovery and diagnosis of me having Crohn's. I was on prednisone on and off for a long time as well as 6MP and other medications. 4 years later I had bowel obstruction and had emergency surgery to remove my diseased part of the colon. I continued on the 6MP and prednisone after this as well. At 18 I started taking 6mp and Remicade. I soon discontinued the 6MP and continued on the Remicade only. It was my miracle drug. Every 8 weeks with no flare-ups was amazing. I am now going on 24 but am afraid I need to find another option or increase the rate I have infusions. I am having cramps and bloody stools 5 weeks after having an infusion. The Remicade is no longer doing the trick like it used to. I have an appointment in 2 weeks with my GI to discuss options and alternatives. I have been around the block and am well informed with Crohn's. If anyone has any questions feel free to message me or reply!
 

Angrybird

Moderator
Location
Hertfordshire
Hello and :welcome: to the forum. I am pleased you have decided to join, although sorry to hear that the Remi is no longer being as affective as it used to be. I assume you are in contact with your GI about this. Have they suggested anything to you yet? Perhaps have a nosy around our treatment forum to check out alternative meds that get used.

Hope things can be sorted for you soon

AB
xx
 

David

Co-Founder
Location
Naples, Florida
Greetings to you! I'm glad you joined the community. I'm so sorry to hear that the Remicade isn't working as well as it used to :( Has your doctor discussed what they're leaning towards next? If I had to guess, I'd say they're going to look towards Humira.

Please keep us updated and by all means, share your knowledge of IBD here. The more answers and insight people get, the better :)

I wish you all the best.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi there dresslma and welcome to the forum! :D

I was also diagnosed when I was 9 and had to spend 3 months in the hospital till they found a diagnosis. I had a resection as well but fortunately the 6MP has worked for me post op. That's pretty harsh to find that the Remicade isn't working and I really hope your bleeding gets under control soon. Can't believe your GI actually wants to wait to have an appointment with you knowing that you have bleeding. I know my GI has mentioned Hurmira to me if the 6MP isn't working anymore. Keep us posted on what you GI suggests.
 
Welcome to the forum! I can't add much in the way of knowledge, being new to this myself, but there are tons of smart, helpful people on here who are very generous sharing their experiences. I hope you are feeling better soon.

Best,
Lisa
 
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