Do you ever feel like giving up (meds)?

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chrisnsteph1022

chrisnsteph1022

Joined
Jan 13, 2011
Messages
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I'm due for my Cimzia shot tonight. I just don't want to do it. I've been doing it since February, and while I had a couple decent months of improvement, I've been going downhill since. Added Imuran 8.5 weeks ago and no improvement still. Started an elimination diet (no dairy, wheat/gluten, sugar, soy, egg, corn) 5 days ago and no improvement yet. I'm just tired of feeling like a lab rat and testing all this crap and none of it working. It makes me want to throw it all out the window and start from scratch.

My next appointment with my integrated doc (put me on this **** diet) is 12/20, so I'm commited to doing this until then. Next appointment with GI is 1/11, so I'm trying to continue the meds until then. If no improvement by then, I'm quitting Cimzia, Apriso and Imuran and giving Remicade a shot. I'm just struggling with sticking it out that long and doing all this work for nothing. What's the point?

Maybe I should just suck it up and be happy that the bleeding hasn't come back (yet). It could always be worse, right?
 
Ugh! It is such a pain in the arse to have to try different medicines, take different medicines and keep a happy smile all the whilE! I feel for you. Remicade was wonderful for me. Try it! But don't give up as tempting as it is.
 
I agree with Sunflower! But I know what you mean. I came off Pred at last a month ago, but had to up my Aza as I'd put on so much weight and I had a rough few weeks, tho not in the bowel department. At that point, I felt a bit rebellious about all the chemicals going into my body.
But I'm too scared to pack em in. Fear the return of fistulas etc.
The Imuran can take up to 3 months to kick in. And I too have had the most significant reduction in symptoms with Remi.
Hang in there! X
 
You ask if I ever feel like giving up meds, and I'll tell you yes. All the time I think about it. I hate all the side effects. However, I think I hate uncontrolled Crohn's more, so I won't be giving them up, as much as I'd like to.
 
Never give up the meds!!! It sounds like a good idea but it's the worst possible thing you can do. The plague we have is not forgiving, it will make you pay for it if you let it...

Hey Crabby some guys love girls with a round figure :)

Just love your : Even had a guy ask me to be his girlfriend while my cheeks were storing nuts for the winter. Almost pee in my pants!
 
So here's where I am now. I'm optimistic that I'm going to be better by the end of the year. Maybe from diet, maybe from Imuran, who knows. Maybe it's because I'm having ONE good day today, so I have hope again. Anyway, I do NOT want to be on all 3 classes of drugs forever for maintenance. Which one do I stay on for maintenance once I get into remission? 5-ASA, immunosuppressant or biologic? It's just not safe to be on all 3 long-term, imo. I started with the Apriso and flared up while on it. Stayed on it and added the Cimzia. Was getting better for a couple months, then went downhill again. Stayed on both of those and added the imuran. So do I drop them in that order? I don't know what to plan for.
 
Hi Stephanie
I'm so there with you, I think we are all there with you at some stage or another and not just on one occasion either. We spend our times fearing meds and their side effects and then if we are lucky to get to remission we fear stopping or changing those meds. I have taken many views over the years, like "live fast and die young" sorry if that sounds odd to you but I was so fed up in my teenage years of being controlled that I felt it didn't matter what I tried nothing was going to work and the important thing was that I enjoyed my time. then as the years passed I wanted to control my CD and "live well enjoy life" became my motto. It's not all easy days now, I do get fed up still but as you mentioned the good days can really boost us and help us to fight back. You managed remission from 2004-2010 you will do it again. my remission was 2006-2010and I think with each others help we'll get back to where we want to be real soon.
Gwen xxx
 
I did give up on meds. I haven't taken meds for my crohns for about a year now and I actually feel great. Much better than when I was on meds to be honest. I'm sure one day things could get worse, and maybe I'll need more than medication but for now I'm going to take advantage of every day I can without stuffing pills down my throat or shooting drugs into my body.
 
I gave up meds once, years ago. And then I ended up in the hospital and started a year+ long flare. Never again. Even though I was feeling great not being on anything recently, I knew better than to not be on a maintenance med since the Crohn's can do damage without you knowing it. So I went to Remicade. I quit the 6MP and Apriso when I stopped the Cimzia. I also starting juicing which has made a HUGE difference for me. Whatever you decide to do, make sure you do so after talking with your doc. Best of luck to ya!

P.S. the switch from Cimzia to Remicade has been great for me, despite having one GI Doc tell me it wouldn't work. Can't hurt to try!
 
chrisnsteph1022 said:
Which one do I stay on for maintenance once I get into remission?
Click to expand...

Dunno, everyone is different. After my resection/forced remission I was on 6MP and Asacol and now I'm just on 6MP. Since stopping the Asacol my inflammation markers have been slowly rising. Not enough to say I'm in a flare or anything but enough to tell me that maybe for me, immune suppression is not enough. Or maybe it is. I wont know till I flare again.
 
I gave em up when I was 9 or so...it was a total failure. Lost half my colon for that mistake!
As for what to phase out, maybe the apriso would be good to try first? It's the milder of 3 so it would be the least drastic, plus you may be having a bad reaction to it. I had an awful experience on pentasa, which led to said decision about quitting meds. My GI says that some people actually react worse to mild mesalamine drugs which actually exacerbate your GI problems. It is rare, but happened to me with pentasa...
So maybe you could test phasing out the Apriso just to see what happens but stay on the other stuff? Of course just my rambling thoughts...:lol: def talk to your GI about it!
 
KWalker said:
I did give up on meds. I haven't taken meds for my crohns for about a year now and I actually feel great. Much better than when I was on meds to be honest. I'm sure one day things could get worse, and maybe I'll need more than medication but for now I'm going to take advantage of every day I can without stuffing pills down my throat or shooting drugs into my body.
Click to expand...

How did that work out for you? Didn't you just have a big abcess or something that had you in the hospital for many days?
 
chrisnsteph1022 said:
Started an elimination diet (no dairy, wheat/gluten, sugar, soy, egg, corn) 5 days ago and no improvement yet. I'm just tired of feeling like a lab rat and testing all this crap and none of it working. It makes me want to throw it all out the window and start from scratch.
Click to expand...
The elimination diet is a long painful ordeal. Case in point, if gluten is the issue it takes about three months without gluten for the gut to actually heal up and for the issue to clear up.
 
Yes, I fell off the medication wagon for 8 months once. The resulting flare was the worst I've ever experienced-I ended up with a GI tract full of abcesses, iritis, and joints so stiff I was unable to move on my own-I needed a cane and wheelchair. From the ensuing inflammation I developed colon cancer, Stage 1-it took well ovr a year to calm it down and clear up all the issues.
It was soooo not worth it!!! Please just hang in there, I know the weekly shots are rough-I inject Methotrexate IM every week for the past three years, and I'm at the point where I can't bring myself to do it; my DH does it for me now. You just gotta keep up the fight, and it'll get better :)
 
Look at what else you are putting in your body. What are you drinking? Eliminate caffeine, processed foods, carbonated beverages...as they all can cause inflammation and attribute to pain/swelling, etc...Try water for a week and see if you can feel a difference. What we put in is what comes out and something is causing additional distress to you. Eliminate sugar; as that seems to be the most dangerous for all of us since it is a primary source of disease. You can figure this out...keep focused on a positive outcome and that will happen! Keep your chin up!
 

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