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The joys of remicade - ooh la la!

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Posted 6/2/2010 12:23 AM (GMT 0)
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!

hahah

I'm having a BM only once a day!

hahahah

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!

Posted 6/2/2010 2:50 AM (GMT 0)
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.
Posted 6/2/2010 10:55 AM (GMT 0)
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 :-/
Posted 6/2/2010 1:11 PM (GMT 0)
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!

Posted 6/2/2010 3:36 PM (GMT 0)
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.
Posted 6/2/2010 10:30 PM (GMT 0)
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
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