Back on Prednisone

I went to the GI today and the Flagyl and Cippro haven't done a thing for me in the last 3 weeks. Last week I was feeling about as bad as when I first got diagnosed. I could barely walk because I could feel my intestines scream with every step <bleh>. I felt a little better today but I need them to get this under control. I'm too busy to be sick and feverish all of the time

They've put my on Prednisone which I never thought I would do again but I welcome it this time. I guess when you feel like crap, side effects don't matter as much any more. Besides I could gain a few pounds, I lost another 2 pounds and I'm down to 123 which is the lowest I've ever weighed in my adult life. I just LOOK sick and I hate it. (For example...in my substance abuse class we had to act of the good and bad of different drugs and while I was in the restroom I'm pretty sure they were talking about me behind my back saying I should be the addict because of how bad I look right now) The good news is that they are letting me semi-wean myself onto it because last time they just started me at 30mg and I remember feeling like I was falling off the earth lol. By Monday I'll be up to 30mg and hopefully it won't hit me as hard this time.

I'm hoping that this will allow my intestines to heal up a little and give my fistula a break until the Cimzia can start doing it's job. I've been getting worried about it because I don't know if I can live with this forever (the fistula...obviously I have to live with the CD forever lol). I'm running out of medications to try to fix it and they said that surgery is the last resort because it isn't completely superficial. They said I could end up being incontinent...at 26. I can't deal with that either.

I'm a hot mess right now. I was doing so well for a few years and had pretty much stopped taking all medications except for my 16 Pentasa but now I'm back up to 26 pills a day plus Cimzia (and I'm about to add some more once I see mental health next week for my depression). I dislike taking so many pills because really we don't know what all of this does to us in the long run.

Anyway, I've just had a few frustrated/scared moments in the last few weeks and wanted a hug or two. I'm really looking forward to eating normal food and feeling better from the Prednisone though :P Who woulda thought I'd be happy to be on it again lol.

love love

sending ((((((((((((((hugs))))))))))))))))) your way, Misscris. I hope the prednisone helps.

Today is day 3 of the Prednisone and I feel a million times better already. It is so worth it because being sick was starting to affect the service I gave to my clients which is not ok. I'm hoping that I'll stay feeling well for the rest of this school year :) Thanks for the hugs and prayers.

Hi Miss Cris,

I was on "the Pred" for 2 years (an average of 20mg per day, sometimes more and sometimes less) but I had to eventually be taken off because of the psychological side effects and alarming drop in my bone density. What worked just about as well for me as prednisone was Entocort -- it seems to be roughly as effective as prednisone, but my doctor tells me that there are far fewer side effects. She said something about how it is metabolized in the intestines and tends not to circulate throughout your entire blood system like prednisone. On the other hand, my grandfather, who is a doctor and has a moderately bad case of colitis, took a low dose of prednisone every day for 40 years and is still doing pretty well at the age of 95. Go figure!

CH

I'm hoping to only be on them for about a month before I start to taper off because I don't enjoy the joint pain that I know is coming my way lol. I could definitely stand to gain a few, but I'm trying to be careful and not go all crazy like I did last time. All I ate for 2 months straight was loads and loads of sweet and sour chicken. It was the only thing that sounded good and I couldn't get enough of it. I think I gained about 20 pounds in 2 months =\ I don't want to really gain weight right now, I just want to look healthy again.

I'm sorry to hear you are having such a rough time right now Wish :( I told my doctors about a year ago that I would rather die than go back on Prednisone because it was so awful the last time. I think the difference was that I was feeling fine at the time and right now...not so much. There have been days in the last few weeks that I really felt like I was close to death, especially from the weight loss. I would stand up and really feel like I was going to fall over and die by the end of the night. This DD has wrecked havoc on all of us in some way or another, its just about finding what works for you. It sounds like your bad experience will stay with you for awhile but at least now you are better educated as a patient because of it. It's important that we all question the medicines and procedures they put us through to make sure we are getting the best possible care. I really hope they get you fixed up soon. <3