Agh! Ok, I'm gonna vent here

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Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/3/2008 8:17 AM (GMT -6)   
So I've been back on the steroid enemas for the past week because I'm in a flare - not a really bad one yet.  I haven't been on the steroid enemas in almost a year but before that I was on them for a year - then got thrown on 6mp because I couldn't get off them without flaring.  But now that I am back on them, it seems my body retained the memory of them because I am having those horrible side effects already!  Is that even possible??  For the past 2 nights, I have been hardly able to stay asleep even on sleeping pills and I've been having the most horrible and vivid dreams.  Plus, for the past 2 days I have been cramping something fierce when I go to the bathroom.  I can feel when I sit on the toilet when I still have stool to come out because I cramp, get the chills and start getting those shooting rectal pains.  But as soon as it is out, I feel 100% better.  I didn't even have the cramping before I started on the steroid enemas.  So why now?  Also speaking of side effects - I am feeling downright evil and cranky!  Maybe it's the lack of sleep but I don't think it's that because I had the evil feeling a few days after starting the enemas.  Grr ok, sorry - just had to vent but seriously - anyone that have been on long term enema usage, does this ever happen to you?? Almost instant side effects?
 
Oh but on a good note - the steroid manage to shrink my hemmie and insertion is so much easier now *breathing a sigh of relief*.  :-)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/3/2008 8:21 AM (GMT -6)   
I think it is possible! I was on the steroids not even three days and I had the side effects! Moon face was already full blown. Acne started. It was crazy!

Hooray for the hemi shrinkage!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/3/2008 9:03 AM (GMT -6)   
i've been back on the steriod e's for two weeks, and upped my pred from 5mg to 10mg a day. No wonder why I am crying all the time and super pissy.

When I get up in the am to have my first bm after the e' it is cramps and gotta go immediately!

how are the e's helping you Sherry? In two weeks I have not gotten better or worse really. Though today I had my first semi formed stool in two weeks, so I don't know???? Still bleeding and have cramps and D. Have 'only' gone 3 times today, so far!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/3/2008 9:18 AM (GMT -6)   
They seem to be helping and after complaining about them last night to my hubby, he asked me "BUT, are they working???" I had to say a grudgingly yesssss. I have no more bleeding and fairly solid bm's - well the first one is anyway, the next 2,3,4 lol are not D but not quite solid either. So they are working but man, those cramps are horrible!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


AngelTT
Regular Member


Date Joined Jun 2005
Total Posts : 213
   Posted 6/3/2008 10:44 AM (GMT -6)   
My husband and I refer to the Prednisone part of me as "the beast." The beast gets hungry more often, can't sleep well at night and sweats like someone who has been running a marathon. The beast also takes my poor husband's head off at least once per day. My tolerance level goes down to 0 and I go from zero to CRAZY in less than a second. I've been through IVF with estrogen levels of 6,000 and it was nothing compared to me on Prednisone.  tongue   Hang in there dear.

34 year old female, Diagnosed 5 years ago
Current Meds: Remicade every 6 weeks, Prednisone 20mg, Prevacid, Sustenex, Lialda, Lexapro (anxiety), Synthroid, Iron, vitamin, Fish Oil
Expecting first child 12/08 via gestational surrogate!!!!


Bigphule
Regular Member


Date Joined Dec 2007
Total Posts : 137
   Posted 6/3/2008 12:02 PM (GMT -6)   
I'm sorry to hear that you folks are going through all that. In the past I've had very mild side effects to the Pred. Sure I had some anger issues when I first got on it, but not since then and I've had to deal with the acne, that really sucks.

I reccomend that every get themselves a heavy punching bag (husbands are not punching bags :p ) and just go at it. Thats what I do. I got a sweet deal at Play it Again Sports so if the idea sounds interesting check your local used sporting goods store. A used bag is great, but get new gloves... used ones are just icky!
Diagnosed UC 12/2007
Updated 6/2/08 
 
Prednisone 40mg x 1/day 
Mercaptopurine 50mg x1/day 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/3/2008 12:03 PM (GMT -6)   
But my husband is softer! :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Bigphule
Regular Member


Date Joined Dec 2007
Total Posts : 137
   Posted 6/3/2008 12:15 PM (GMT -6)   
Hey if he can take it, by all means go for it hahaha
Diagnosed UC 12/2007
Updated 6/2/08 
 
Prednisone 40mg x 1/day 
Mercaptopurine 50mg x1/day 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/3/2008 3:03 PM (GMT -6)   
Steroid enemas give me most of the same symptoms as Pred, just not quite as fierce. When I had both hands injected for my trigger fingers, I had roid rage and trouble sleeping for two weeks. I guess I've just been sensitized, and I get the symptoms quickly.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30511
   Posted 6/3/2008 3:12 PM (GMT -6)   

Hi Sherry...are you on the foam ones?..maybe you can take half the dosage rather than the full one. just a suggestion.

Some flares tend continue before the reaction clicks off....might take a week or more before the rectal symptoms stop.

Hope it's sooner than later, however.

q

 


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/3/2008 3:55 PM (GMT -6)   
Well I'm glad to know that I'm not the only one who gets instant side effects from the steroids. I get steroid injections in my fingers too but I've never had a single side effect from those other then a sore finger from the injection. Ok, 1 week down - 2 more to go!

Q, I'm using the liquid hydrocortisone enemas. Foam does absolutely nothing for me. I've tried it in the past. But I may try the half dose tonight to see if that helps.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Bigphule
Regular Member


Date Joined Dec 2007
Total Posts : 137
   Posted 6/3/2008 4:27 PM (GMT -6)   
Just a thought, if you take half a dose and get through the night better, can you split the dose? Take half before you go to bed and the other half when you wake up.

I have no clue what you're going through with the enema so I could be totally off base, but it was just a thought.
Diagnosed UC 12/2007
Updated 6/2/08 
 
Prednisone 40mg x 1/day 
Mercaptopurine 50mg x1/day 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5177
   Posted 6/4/2008 12:45 AM (GMT -6)   
Since you, Sherry, & Beth mention cramping & you both have Prilosec listed in your sigs, I'm thinking that you must have more than "moderate" inflammation-- or, the steroid & Prilosec together may not be helpful for some reason. In flares where I used the steroid enemas pain relief came quickly & side effects didn't crop up 'til 6 weeks or later. Then what I mainly felt were hunger pangs because my appetite got really fierce. I'd advise to stick with the enemas for at least 3 weeks, though. Watch your salt intake & be sure you're getting enough potassium & calcium. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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