Why wear a ribbon?

"Because i can't get through this alone" (momo89)

MDJunction to me

"MD Junction is my second home, Where my friends are always ready with advise , compassion and a kind word or two. Where I can always be myself never having to put on a brave face or smile if I don't feel like it.
Thank you MD Junction" (mpmom)
We comply with the HONcode standard for trustworthy health information:
verify here.
Crohn's Disease Support Group
Crohn's Disease Support Group
A community of patients, family members and friends dedicated to dealing with Crohn's Disease, together.
Join This Group
Crohn's Disease Community Crohn's Disease Support Forums General & Support Freakin Out
Freakin Out
Related Discussions:
01/26/2008 06:39
DancinGrl
Posts: 42
Member

Send a PM
Give a Hug
 Hey all, my Crohn's has been acting up and I recently went to the doctor. He is putting me on Entocort and I am really nervous about it. He said that the side effects were the same as Prednisone but not as serious. I blew up like a balloon when I was on Prednisone and my face was really swollen too. I am scared that is going to happen again. Has anyone been on Entocort and can tell me if they gained weight with it? I had absolutely no self esteem when I was on Prednisone because I looked like a walking marshmellow. I shouldn't have to be on it long, but when I was on Prednisone, I gained the bulk of the weight in a very short period of time. I know I need to gain ten or fifteen pounds, but I don't know if I can go through that again. I know I have been lucky with my Crohn's so far, but I am just scared. What if it doesn't work? what if I have to stay on it for a long time?...What if this gets worse and I am back to the beginning? It seems like I am underwater and I just can't get to the surface. I did well for a few years, but the past year and a half it has been one thing after another. I feel like everything is snowballing. I know that was a rant. I am very lucky that I have insurance, that I have supportive friends and family, but I am so sick of being sick. Any info would be great. Thanks.
Reply  


01/26/2008 11:43
lar
Silver Ribbon
Posts: 52
Member

Send a PM
Give a Hug
 I think this is the place where you can rant without any guilt. I was on Endocort for about a year with no weight gain. It also didn't do a whole lot for me. I am guessing our make up is different though because I have been on Prednisone long stretches many times and did not balloon either. I guess I got lucky! I do know a young girl that goes to school where I work and she ballooned but it went away fast after she got off the meds. Sorry not much help but I'm thinking of ya.

Popular posts by lar
    Body Aches/Tired
    Blah
    What keeps you busy?
Reply  


01/26/2008 16:33
jay1962
Posts: 79
Member

Send a PM
Give a Hug
 I absolutely refuse to ever be on Prednisone again because of all the side effects. Curious about the Entocort also. I have had a flair up for a little over a year now, done Pred. , Humaria, and Remicade IV, all to have bad side effects. My doctors have just admitted that they are at a loss and do not know what to do. I also am tiried.
Reply  






01/26/2008 16:43
DancinGrl
Posts: 42
Member

Send a PM
Give a Hug
 Thanks, I did lose the weight after the Prednisone, but gaining and losing weight quickly took a toll on my body. I just don't want to deal with this again. Just a bad day. Thanks for the support.
Reply  


01/26/2008 18:17
jay1962
Posts: 79
Member

Send a PM
Give a Hug
 All the years and bad days seem to have caught up with me also. I thought that I was over the emotional stress but have just realized that after 33 years they still do not know any more today than the first day. No matter how good of an outlook on life that you have it is bound to get the best of you from time to time. Finding this web site the last couple of days has surely helped though. I find no matter how supportive friends and family are it is hard to open up to them. I put on a hard face for my kids and wife, do not want them to worry. I guess it is one of thous things that you do not know about unless you have been there. It is good to hear there are others in the same situation.
Reply  


01/27/2008 05:49
DancinGrl
Posts: 42
Member

Send a PM
Give a Hug
 I couldn't have said it better. This web site has been a saving grace for me. Some friends try to be supportive, but shrug off my worries thinking that is what I need. But really just being able to say these things and having people listen is the best thing ever. Having someone say you know what I hear you and I really do know what you are going through makes a big difference.
Reply  


01/29/2008 13:07
karebear
Posts: 16
New Member

Send a PM
Give a Hug
 I also just started on Entocort. At first, I didn't really see too many side effects. But, after a couple of weeks, I'm starting to feel them. I'm pretty sure my face has gotten puffy, and I'm gaining weight (about 5 pounds). It's a complete reversal for me, because I've lost 45 pounds since October and my surgery. I also noticed I'm getting hot and not sleeping as well. I was just at the doc today, and asked if I could come off of it, but he won't let me right now because my anastamotic site is narrowing, and he's worried I could stricture again. He doesn't want to send me back to surgery, so Entocort it is. I'm really upset about it, though. I was very overweight, and the 45 pounds has been a good start (although a crappy way to lose it, no pun intended).
Reply  






01/31/2008 17:14
DancinGrl
Posts: 42
Member

Send a PM
Give a Hug
 Thanks for the info. I have only been on for a wk. I am still nervous because I still haven't completely evened out and my doc won't take me off unless I am def. good to go. I have been getting headaches. I had not such a great day yesterday and my morning today sucked. A couple of people at work understand what is going on, well I have told them a little about it. Still they think I am totally fine because I haven't had the reaction they have been expecting in the past couple of days and act like this is no big deal. I know I have it a lot better than some, but why does that give someone the right to belittle your journey. It doesn't and it hurts when someone you have known for years makes you feel like you shouldn't react the way you are.
Reply  


02/04/2008 18:57
IveGotGuts
Pink Ribbon
Posts: 25
New Member

Send a PM
Give a Hug
 DancinGrl,

I have been on every drug mentioned above and then some. I completely hated prednisone, it was the absolute worst for me. My doc then put me on Entocort, and for me the side effects were not nearly as severe as with the prednisone. As I am reading above I see that every drug affects everyone differently, but I didn't have as many trouble with Entocort. It takes so long to adjust all of the medications to a level that aleviates symptoms and I know it can be a long hard road. Just know everyone here in this support group knows how you are feeling, don't feel bad about venting! It's what this site is here for.

Hope you are feeling better soon

Reply  


02/05/2008 16:03
DancinGrl
Posts: 42
Member

Send a PM
Give a Hug
 I totally hated Prednisone too. I was feeling better, but lately my stomach has been hurting so bad. I am not going to the bathroom as much, but I am in a lot of pain. I don't know if the doctor will let me get off the Entocort or if he will try to put me on something else. If he puts me on something else, he will probably put me on Prednisone and I really don't know if I can handle that crap. I have no self esteem when I am on that. I have a hard enough time dealing with acting like everything is okay at work.
Reply  



Start a New Discussion

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice. Read more.
Contact Us | Bookmark Us | Add a Doctor | For Doctors | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | Advertise
Copyright (c) 2008 MDJunction.com All Rights Reserved