The joys of remicade - ooh la la!

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Regular Member

Date Joined Jan 2010
Total Posts : 336
   Posted 6/1/2010 7:23 PM (GMT -6)   
Man, I've been living my life med free for the past 12 years.
I thought I was doing good.
I knew what my normal was and it never occurred to me that my normal might be considered a bad quality of life.
Things went bad and I got abscesses and fistulas and now, after a long battle with the HMO, I've just done my second infusion of Remicade.
I'm having solid BMs!
I'm having a BM only once a day!
It's silly, but I feel like my bowels are just super mellow, almost as if they are enjoying copious amounts of Mary Jane and are simply too lazy to get going! tongue
My fistula is still draining, but less often, so I suppose it's simply a matter of time before it goes on its merry way.
I don't know about you guys, but I think it took Remicade and this difference in the quality and quantity of my BMs to get me to actually see how poorly I've been living these past 12 years during my so called 'remission'.
I don't think I believe in remission anymore. I don't think others should either. It's a false sense of security, which people, myself included, use to justify abstaining from their meds.
There's no question to this post.
I'm just hoping someone out there reading this, who is either considering going off their meds or feels too 'good' to be on medication, will listen to my story and learn from it.
Besides, we need good news on this forum every once in awhile.
I encourage each of you to post something positive, so that the lurkers will realize that it's not all surgeries and side effects here on HW - Crohn's.
Salve, amici!
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
The surgeon said it is inoperable and so I start Remicade on May 7th.

Veteran Member

Date Joined Jan 2006
Total Posts : 725
   Posted 6/1/2010 9:50 PM (GMT -6)   
I did awesome on Remicade for the last 8 years. I enjoyed many long periods of symptom free living. I've had to go off it, am I'm already starting to miss it. I know a lot of people are concerned about the side affects, but I think if they could realize how good life can be, they'd realize that some of the risks might be worth it.

Glad to hear it is working for someone else. All to often I feel that there is too much focus on the negative sides.
Matthew McKenna,
Joey's dad.
Crohn's Disease and Guillian-Barre' Syndrome.
Remicade, 6MP and a few of their friends.

"I'm just along for the ride."

Veteran Member

Date Joined Jan 2010
Total Posts : 8422
   Posted 6/2/2010 5:55 AM (GMT -6)   
Excellent post. I logged in just to reply to this (since I don't have much time right now).

I thought the title was sarcastic and fully expected to see another post outlining horrible side-effects. Genuinely glad to see it wasn't that and that the Remicade has made you so much better; in so far as you can discern tone on the internet, you sound better.

I could've written parts of your posts. I was nearly entirely med-free for 10 years. Thought I was doing okay. It was only when I started doing so badly last year and this year that even I couldn't brush it aside as being "just" the Crohn's anymore that I realised I wasn't doing really okay after all. Personally, while I was mildly symptomatic from diagnosis in 1999 onwards, I think things took a downturn five years ago - went through a period of having bad fevers, got over that, and told myself I was okay, but I wasn't really. In reality, the Crohn's had worsened, I was having more diarrhoea, fevers occasionally came back, etc.

I'm due to go on Remicade in a couple of months, hopefully. And I really hope it has the effect on me that it has on you. My only worry is that I won't be able to stay on it for longer than three doses, but I'll worry about that when the time comes :-/

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/2/2010 8:11 AM (GMT -6)   
I am another who learned my lesson the hard way about maintenance meds myself.  I had a nearly 20 year remission med free.  Would I do it again, heck NO!!!  My remission ended with an emergency resection due to complete obstruction.  While I was busy getting on with my life, the Crohns was still in there doing its damage on a microscopic level unbeknowst to me.  So now I am a good girl and take my meds as directed, and because of that I am back in remission.  Life isn't perfect, and I occasionally have bad days, but they are fewer and far between now.  Hugs!

Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Sep 2006
Total Posts : 118
   Posted 6/2/2010 10:36 AM (GMT -6)   
I can't agree more with this post. I was on remicade and 6mp and felt great then went off for a while and went into denial thinking that I didn't need Remicade and was doing fine without it. Far from the truth; I lost tons of weight, my BMS increased, I felt tired, and got stomach cramps. -I was scared about all the side effects and risks that I read about and didn't want to go back on it. Thank gd I finally got out of the denial stage and now take all my meds consisntently and feel much better. I an no longer trying to ween off the meds if I feel better because it ends up making me regress to my previous state of being sick. I've come to accept this disease and accept the fact that I need the meds to help me feel better and stay better.

Regular Member

Date Joined Aug 2006
Total Posts : 29
   Posted 6/2/2010 5:30 PM (GMT -6)   
Great post, gypsy. Glad to hear some good news.

Honestly, I'm torn about remission periods (aka, no doctoring/ignorance is bliss) -vs- maintaining my CD. Perhaps I'm just more pig-headed than most and have a bad attitude about it, but CD has been my bitter enemy since age 12 (now going on 37) and I refuse to give it any more attention than it absolutely demands. I've had 2 resections and got a good number of years of no doctoring after each of them. I'm coming off 5 yrs of smooth sailing and hit problems again last week (ER + 2 days in hosp), but to me, that was a good run. I'm still not sure if all the hassle of doctoring and having to change my life is worth it. But then again, maybe I'm just not thinking clearly due to the prednisone! Hah!

I am going to have to make some decisions coming up here - after my run-in last week, the xrays and CT scan are showing scar tissue and active CD at my resection. I have an appt on Mon, 6/14 and will most likely be pushed towards a maintenance plan on meds, but I hate taking them. I never had much success with Imuran or Asacol, only had 2 treatments of Rem before my last resection, and I'm trying Pentasa + prednisone now - have had funky side effects from all but the Rem (too short to tell IMO). Not sure I want to sign up for that again, but do I have much choice?

Anyway, congrats on the BMs! That's a big deal, seriously! LOL
(not-so) Successfully In Denial of my Crohn's Disease since 1985!
Resection surgeries 1993 and 2004.
May 2010: Currently on Pentasa and enough Prednisone to revive a dead horse!

*Life is 10% what happens to you and 90% how you react to it."

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