My Remicade Story

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Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 11/7/2009 12:09 PM (GMT -7)   
I was diagnosed with Crohn's colitis in September of 2007. Two ulcers in my rectum and mild inflammation extending past the sigmoid and then disappearing into healthy tissue. Biopsies, blood tests revealed nothing to distinguish the inflammation from UC, but my doc went with the Crohn's diagnosis due to the depth of the ulcers (transmural) and some perianal complications (fissure). I was relatively well controlled with the 5-ASAs Colozal and Canasa for 18 months. This past May my symptoms got worse - increased bleeding, urgency, and frequency. I doubled up on the Canasa, one in the morning and one at night. I also started 6MP. This seemed to help a little. I added Rowasa enemas in August. Once I added the Rowasa to the mix, I seemed to get worse. I had more left sided pain and more of the above symptoms. I stopped the rectal meds and I seemed to get better for a week and then reverted back to the usual hell.

During this time I also steadily increased my 6MP dosage all the way to 100mg and my blood work was always fine. I also developed diarrhea at this point, not one of my usual symptoms. I stopped 6MP the first week of October and the diarrhea went away, but I still had the other symptoms. My doc and I decided to give Remicade a try and he wanted me to re-challenge with 6MP. While the weeks ticked by waiting for the approval and appointment for Remicade, I started 6MP again. Again I developed D so I quit the 6MP after a week.

The days leading up to the infusion got progressively worse - I had started the rectal meds again, Rowasa and Canasa, and decided to stick with them. I did for 3 days and I had the three worse days of my life to date. I literally had to go every 45min or sooner, 30 - 40x a day. Lots of cramping, urgency, but I only passed small amounts of blood and mucus. Not much to show for the effort. I essentially had no sleep for 2 days due to the bathroom frequency. I had called in a request for pred at this point but my infusion happened the following day.

I had my first Remicade infusion on Wednesday, November 4th. I had no pre-meds. The Remicade infusion was started around 1200 and I was finished around 1530. No reactions, no different feelings, no nothing. I went home and that night enjoyed 6 straight hours of sleep - heavenly after the preceding week of hell.

24 hours after infusion: reduced bleeding and frequency - only 10x a day or so. Much less urgency. Did not notice any fatigue, flu symptoms, etc. Felt OK, not great mainly due to symptoms.

48 hours after infusion: went back to work, had a relatively solid BM! Even less bleeding, no left sided pain, only went 4x or so that day. I even enjoyed a diet coke - had been avoiding caffeine for obvious reasons!

72 hours after infusion: I have gone once this morning - again relatively solid! Still haven't had a BM that I would call remission. Very little bleeding, no mucous. Butt feels "sore" after the BM, like it did when I was pre-CD after having a larger/firmer BM that might have stretched things out a little bit. I don't feel the urge to go again yet, going on 8 hours between BMs. Feel pretty good. Probably 7-8/10 with 10 being in remission and asymptomatic.

So far I am very pleased with Remicade and I can't wait for the second infusion on Nov. 17th. I have tried to keep my expectations within the realm of reality so as not to be disappointed. I'm not in remission yet, but here's to hope!!
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


sooper
Veteran Member


Date Joined May 2003
Total Posts : 815
   Posted 11/7/2009 1:33 PM (GMT -7)   
You have my symptoms.. anus trouble and stuff. Cortifoam, everything we are pretty similiar!

Remicade has also helped me a lot. I havnt had diareah once since I started. After each infusion my perianal sores heal up, but now on week 3 since last treatment and sores are appearing. Go for my third infusion Monday. Worried about some side effetcs, but I will give it to remicade, it hasnt remitted me, as nothing ever has but its been the best of all the meds in the last 8 years. I kinda wish I would had started 8 years ago.

I hope it keepins working for you with limited side effetcs. I am in a study, basically after my 3rd infusion if I feel better, then if symptoms reappear close to my 8 week mark there is two groups, one will start getting an infusion every 6 weeks Vs 8, and another will be given a higher dose each 8 weeks. Im kinda scared ha... its like lets see if they get more side effects.. hehehe. I wanna save my ass.... I had a temp bag before dont want that... who does though. So I was like maybe this study will be good and keep me going without a bag for the next 8 years if im lucky.

Anyway. I am sorry to rant in here. But I am very glad to see your results : )
im a professional... on an amateur level !


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 11/7/2009 1:36 PM (GMT -7)   
sooper - Since this summer I haven't found the rectal meds to be that helpful, including cortifoam. It's like they completely stopped helping and in fact made me worse. I wonder about it sometimes.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


sooper
Veteran Member


Date Joined May 2003
Total Posts : 815
   Posted 11/7/2009 1:46 PM (GMT -7)   
wait till after your next infusion, and more importantly how you feel after your 3rd... I think you are on track to see some good results after a couple of months!! Keep us updated : )
im a professional... on an amateur level !

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