Just got out of the hospital...

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SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 4/2/2010 7:28 AM (GMT -7)   
So Sunday I went to a clinic to try to attempt to find some pain management since I'm in between primary cares right now.  She didn't like that I had a 102 fever in addition to the Crohns stuff so told me to go to the ER, since my GI's partner was working in that hospital.  He admits me after being in the ER for hours.  And since I was too tired to argue somehow I got on Prednisone, the one thing I swore I would never go on again unless it was a life or death situation. 
 
I got to leave yesterday, Thursday.  The hospital sucked.  My iv got infiltrated twice so my hand was all poofy and swollen.  The first time it happened while I was waiting to be transported to my room after a chest x-ray.  My hand kept on getting bigger and bigger and there was no one around to show it to.  It was scary.  (My right hand is still poofy because it was from yesterday but at least it went down enough that I can give a thumb's up sign again.)  I find most people in hospital are usually horrible at taking blood.  I hate the ones who stick you and then woosh it around while the needle's inside of you.  Move on people! You're not going to get it like that!  I was on an all liquid diet for most of my stay and they would give me stuff like milk that I shouldnt be having.  By Wed afternoon I was finally allowed to eat food (low residue, lactose free) and they never brought me dinner!  And then Thursday morning they gave me a bagel with poppyseeds!  Don't they read the chart that says, "Hey this chick has crohns, she can't eat stuff like that!" 
 
I'm scared of the Prednisone.  I don't want to be all moon faced again.  It's less of a dosage then when I was on it in '02 (I was on 60 now I'm on 40) but I feel like it's still going to mess with me.  I just remember being really fat looking and crazy feeling on it.  I know I was on it this whole time in the hospital but I guess it doesn't seem as real when you're getting it through an iv.  Now that I'm going to have to take it in pill form it's real.  And I don't want to.  I also need to take 2 antibiotics (cipro and flagyl) and I don't even know why. 
 
It's hard for me to focus on getting better.  The day before I went to the hospital my dad sent me an email about how fat I am.  So I really, really, really don't want to be on the Prenisone. 
 
I really don't even know what I can eat.  I'm afraid to eat and be in pain.  And my legs are all in pain and feel really weak.  I feel like on the one hand I should work out so they can get stronger but considering I can barely go from one room to another without hurting, I don't know if it's smart to get on the treadmill.
 
So, I guess to sum up this post...hospitals suck.  Prednisone sucks.  Crohn's sucks.
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, and Remicade in the past.
 
Currently on 100 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills. 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/2/2010 7:52 AM (GMT -7)   
Giant Hugs!!! Prednisone the drug we love to hate. It works quickly to get our Crohns under control, which is really important. But the side effects suck. It seems like a little overkill to put you on Pred and the antibiotics. I would think one or the other would suffice, but thats just my laymen's opinion. Did you doctor tell you how to wean yet? I usually always went down 5 mg every 5 days.

As for exercising I think since you are so weak, it might be best to rest up a few days before you start getting on the treadmill. Get your strength back, then slowly start your treadmill again. Also, while on the Pred try to avoid the munchie eating if you can and stay away from salt. That should help some to avoid any weight gain. Also drink alot of water as that will help to flush your system.

Sorry you are feeling so bad, I hope the meds work quickly for you and you can get off them soon. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
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"*

SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 4/2/2010 8:59 AM (GMT -7)   
Thanks. I really do need me some giant hugs, stat! :)

I really want to get in touch with my doctor. I left a message for him at the office but he's on vacation so hopefully his partner will call me back. If i could go down 5 mg every 5 days then it wouldn't seem so scary. I talked to him 2 days ago while I was in the hospital but unfortunately I don't remember much of the conversation because I was crazy, tired, and emotional and too busy crying about how I can't go on Prednisone because my dad thinks I'm fat. In retrospect, I wish I remember what he told me. Then yesterday he partner was the one who came in and said I could go home if I wanted so I didn't think to ask him. And now I'm home with all these meds thinking wait, what am I supposed to do?!?

I guess I can't procrastinate any longer...Time to start the Prednisone... :/
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  Just got out of a 5 day hospital stay.  Have to be put on 2 antibiotics and (cry) 40 mg of Prednisone.  And I really really don't want to.
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/2/2010 9:09 AM (GMT -7)   
If you were on it in the hospital you better get on the Pred. You have to wean off this stuff, you can't just stop it are you could do serious adrenal gland damage. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
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"*

sissy22
Regular Member


Date Joined Mar 2010
Total Posts : 23
   Posted 4/2/2010 10:03 AM (GMT -7)   
Just a side note about the prednisone...I know your suppose to drink plenty of liquids but I've read and experienced, try to limit your water intake and you won't get moon face as bad. On the prednisone FDA website it says to talk to your dr about how much liquids you intake. But with my experience the less water I drink the smaller my face is. Don't get me wrong you still need to drink water, just don't over do it. I hope you feel better this disease sucks!

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 4/2/2010 10:58 AM (GMT -7)   
Hun, you need to concentrate on one thing at a time rather than trying to do everything at once start with getting yourself better if you have been given tabs from hossy then take themand see how you go, as for your dads remark tell him you are sorting out your health first as that is more important than being fat right now, once you are feeling better and feel up to it then you can do the other things i.e go on the treadmill etc... For now you need to take it easy and get yourself well. Take care Bev x :-)
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 4/2/2010 1:30 PM (GMT -7)   
Is your name Beverly? 'Cause that's my mom's name. :) And your post sounds like something she would say!

I'm just really scared because of how horrible my life was on Prednisone 8 years ago. But, I need to be positive. Just because it happened 8 years ago doesn't mean its going to happen now. I know I need to take care of my health first. I'm going to try not to be too crazy about the weight stuff of else I might just wind up in there again.

Before the hospital stuff I already lost 10 pounds. I'm hoping the Pred doesn't take that away from me. Today I went to a park and walked (very slowly, like an 80 year old woman) for over an hour. I'm just trying to do my best but not overstrain my body.
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  Just got out of a 5 day hospital stay.  Have to be put on 2 antibiotics and (cry) 40 mg of Prednisone.  And I really really don't want to.
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/2/2010 11:13 PM (GMT -7)   
Hi Sara. Don't stop the pred cold turkey, taper on a schedule given by your doc. Right now, I think you ought to just focus on getting back to normal, and controlling this flare up. Work out when you are better - it will happen. To control the moon face with pred a little, don't consume a lot of salt. Also, I do think a liquid diet right now may help you - something like low fiber plain vanilla ensure - good calories, and gives your bowels a break, and it may help control the symptoms.

As far as other diet advice goes, my husband's GI always recommends the low residue diet when flaring. Plain white pasta, chicken, white rice, nicely ripe banana, ensure. Is the 40 mgs of prednsione controlling your symptoms? If so, you may be able to do a quick taper (on the advice of your doc of course) - like maybe be totally off the pred in about 6-7 weeks. Where is your inflammation? Maybe entocort instead of pred can be used? Discuss with your doc for sure.

Hope you start feeling better really soon.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 4/3/2010 3:49 PM (GMT -7)   
Its weird cause I always thought I had problems with my intestine but my catscan a few weeks ago showed my entire colon was inflammed. And I guess I had some sort of infection which was the reason for all the antibiotics. I guess I'll know more once I talk to my doctor and my colonoscopy late next week.

I originally was put on entocort instead of the pred but then I wound up in the hospital.

Since my GI is on vacation his partner called me back the other day and didn't answer any of my questions. I asked him about tapering after 5 days and he said I'll have to talk with my doctor. And then I asked if he could recommend anything food wise with being on the prednisone and he said no. So helpful! Geez! So far I've just been eating the low residue stuff, trying to eat bland and try to watch the portions.

Thank you for the well wishes. Its weird, does anyone notice getting pain more in the late night and mornings? I felt so pain free all day yesterday I actually felt thankful for being on the Pred, but then at night I was just in major major pain followed through into this morning. And I'm still so tired and run down...I remember Pred last time giving me all this crazy energy. Not that I want to be all crazy like that but that energy would be nice!
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine.  Just got put back on Asacol and Entocort.  I hate swallowing pills.  Just got out of a 5 day hospital stay.  Have to be put on 2 antibiotics and (cry) 40 mg of Prednisone.  And I really really don't want to.
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/3/2010 4:23 PM (GMT -7)   
When my husband gets sick, he has most problems late at night and early in the mornings. That just seems to be the way of things for most people with crohn's. Night sweats, and early morning stomach cramping and diarrhea repeatedly, which interrupts your sleep, and is painful and just wears you out. I don't really have much of a remedy for this, other than to eat dinner early and wait until you feel better in the morning to try eating breakfast. Also, you can manage symptoms by eating a low residue diet, and avoiding sugars, and fats.

Where in your inflammation? If it is in the lower end of your large intestine, maybe some steroid suppositories will help heal things up faster. Or maybe adding Lialda/Asacol to the mix (I see you've been on it in the past, but I don't know if you're on it now), will help heal the inflammation. Also, antibiotics really do a number on my husband's colon, and probiotics help somewhat. If you aren't taking any already, perhaps it would be good to add some to your regimen (slowly).

Hope you get some good answers soon, and that you get to feeling better.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission

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