It hurts SO BAD.

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dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/28/2008 12:19 AM (GMT -7)   
Maybe it's the pain talking, but I'm super close to calling the doc when the sun rises and taking him up on the offer of pred.

I'm terrified.  I DON'T want to deal with with pred and all it will do to me, but I don't know that I can deal with much more!  The bms tonight have been nothing but bloody mucous and horribly painful.  The cramps themselves last around 15 minutes.  That's WITH the Bentyl.
 
The cortifoam should be in around noon.  It's Friday.  How fast will the foam help me?  I know it won't be an instant - Ah, I feel better.   But will it be close?
 
Would Entocort offer the same fast relief?  All of this assuming my body will even react to the steroid...
 
This is so hard on me emotionally.  I had great hopes that I would never see a flare this bad with the Imuran.
 
I think the most recent darvocet is kicking in.  Time to try to catch some Z's.
 
Thanks all.  Where else does a desperate one turn to when the rest of the peeps are blissfully sleeping?
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


quincy
Elite Member


Date Joined May 2003
Total Posts : 30089
   Posted 3/28/2008 12:27 AM (GMT -7)   
WOW....I've never been in a situation as bad as you're describing...only you'll know what will help get you feeling better.

Maybe the doc can put you on a fast taper from 60 - 0 mg pred over a period of 10 days...plus the steroid enemas?

I hope the darvocet helps.

Is the pain directly in the rectum or is it all throughout?

How many times are you going?

I hope something gives you some relief.  You could consider to double the bentyl?

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 !!!


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 3/28/2008 5:07 AM (GMT -7)   
I have never taken Bentyl but I have used Hyocyamine (sp??). I did double it up on a few occasions. The side effects were pretty yucky though for me.

Sounds like you do need to put a call into the doctor. I am so sorry you are having a tough time. I hope you got some zzzss last night. Keep us posted!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/28/2008 5:07 AM (GMT -7)   
The steroid foam can work in as little as 2 or 3 days but why are you going on the foam instead of the enema?? The foam will only reach so high and considering that you have Pan, the enema will reach higher up. Is it because you are on Rowasa as well? If so, what about using the Rowasa and Colocort-alternating? Or just the Colocorts? I have had intense pain with my flare ups too and I know how miserable you are so. Here's a long distance ((hug)) my friend.
 @--->--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~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 3/28/2008 6:25 AM (GMT -7)   
I appreciate what you are saying about not wanting to take the Prednisone, but it sounds like you are pretty bad off and in great distress. It is obviously important to get the flare under control before you end up with a bowel perforation or worse. You don't want to end up in the hospital! I would put that call into your Dr. for either Entocort or Prednisone.

One thing you should know about Entocort, though, is that it tends to take longer to work than Pred.
Proud new mom of a beautiful baby boy!
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 3/28/2008 8:53 AM (GMT -7)   
I know I say so much bad stuff about pred, but I would take that over flaring badly. hopefully they can do a fast taper and just cut out most of the salt in your diet, try not to go over 1500 mg a day.

Sorry you are in so much pain!!!
Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
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 Sept 2007 - partial remission since 03/08
Prednisone 30mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


pmac
Regular Member


Date Joined May 2005
Total Posts : 221
   Posted 3/28/2008 9:36 AM (GMT -7)   

Sorry to hear that you're having such a bad time.  I've been on cortifoam, and on salofalk enemas after...if I had a choice...I'd be asking for the enemas!  They are such a quick relief especially if you are having many urgent trips...with the cortifoam I really didn't notice any improvement.  The enemas are kind of an annoyance, esp when your tired and just want to go to bed, but they are truly worth it.  I notice right away if I'm "lazy" and don't bother to use one at night eyes

Hope you are feeling better soon!  Take care.

Paula


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5151
   Posted 3/28/2008 9:50 AM (GMT -7)   
Sorry that you're feeling worse! When was your last c-scope? I agree with Red_34 that Cortenemas would do more for you than Cortifoam if you have a flare higher than rectum. They do have a systemic effect that takes longer to kick in than Pred-- but, of course, one can stay on them longer than Pred w/o getting the moon face, etc. Best wishes for relief soon ... hang in there! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 3/28/2008 4:05 PM (GMT -7)   
Dakotagirl, I found that although Entocort takes longer, I had less side effects. I found that on my recent flare the cortisone enemas helped calm down the urgency and bleeding. I hope you get some relief soon..(hugs)
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/28/2008 4:09 PM (GMT -7)   
too bad, dakotagirl- sorry! Tough call- I hate pred too, but have found myself taking it of my own volition when things got bad. For me, it's the only thing that has helped- I would try & do a short course, starting at 60mgs/day, stay on that a couple weeks, then taper as quick as you can. I've found that when I try to fight an active flare with enemas/foam, it just delays the inevitable pred course, & probably makes me stay on pred longer than if I had just gone it straightaway! How you feeling now though, any better? I hope so!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


redbull
Regular Member


Date Joined Mar 2008
Total Posts : 30
   Posted 3/28/2008 4:32 PM (GMT -7)   
Doent be so quick not to take pred it works for me no side affects that i notice. The largest dose I have been put on is 40 mg then taper off 1 mg a week. But I keep having flare ups after I finish Pred like within 2 weeks, so this time I started 10 mg tapering 1 mg a month I am at 8 mg at this time will see how it goes, when the dose gets lower than 5 mg I start having problems . I take 100 mg mercaptopurine plus my pred & folic acid & acifex daily. Pred is the only releif. Good Luck.

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/28/2008 5:15 PM (GMT -7)   
I went for the foam vs the steroid enemas because of retention issues. I'm hoping that a combo of pred and cortifoam will get me back to a workable spot by Monday.

Yes, I gave in to the call of the evil pred. I've been drawn to the dark side. The nurse at my doctor's office has been great. She wants me to call with an update right away Monday morning.

There was a lesson for me in this. The pain is miserable and there's a point where I may need to listen to doc and take pred.

I wanted a whole treatment plan laid out - but right now I have to settle for making it through the weekend. I'll re-evaluate with the nurse/doc on Monday.

Thanks for all of your support!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


laurar
Veteran Member


Date Joined Jan 2006
Total Posts : 730
   Posted 3/28/2008 6:07 PM (GMT -7)   
Oh, Dawn I'm so sorry to read about your ordeal, but I really think you're doing the right thing. Pred is the pits, but it sounds like in this case you really didn't have too many other options. I really hope you feel better soon.

Laura
Diagnosed Ulcerative Pancolitis

Probiotics
Fish Oil
Vitamin C
Slippery Elm
TURMERIC!!!


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 3/28/2008 9:11 PM (GMT -7)   

Dawn, sorry you are having such a rough time. My daughter swore she wouldn't take prednisone again after the side effects the last time. But she started them this week because of the terrible flare she is in. The doctor is trying to at least get it under control so she can focus on getting better. The 30+ trips to the bathroom a day (within just a few hours) is way too much.

I hope you are feeling better very soon.


--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2201
   Posted 3/29/2008 8:22 PM (GMT -7)   
Sometimes I think pred is given a bad rap on this forum. Used wisely, the side effects can be minimal and the relief quick for a mild to moderate flare. It worked wonderfully for me last fall and I was able to taper quickly and get back off it. Nothing's ever black and white, one size fits all for everyone so I think it's hard to say a particular treatment option is always bad or always good.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal.
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/29/2008 8:55 PM (GMT -7)   
We always say we'll never go back on Pred when we're doing okay. But when that horrific flare comes along and we're in pain and we can't leave the bathroom, it starts to look better and better. If it makes you feel better, and you only get the temporary side effects and can taper back off, it's a good tool for achieving remission.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Sideshowbob
Veteran Member


Date Joined Sep 2005
Total Posts : 698
   Posted 3/30/2008 6:09 AM (GMT -7)   
Sorry to hear that you are having a rough time Dawn. Don't be too upset, sometimes we have to give in to the pred just to make it through.
35 year old Male, Husband, Father of the best three kids in the universe.
First Flare was February 2005. Diagnosed June 2005-left-sided Colitis, suspect it has since spread. Started 4000 mg Oral Salofalk June 2005-stopped January 2007. Remission until November 2006. Been in a flare to various degrees since November 2006 to February 2007. Currently in remission.
Presently on 0 mg Prednisone-down from 60 mg!
Weekly 4000 mg Salofalk enemas.
Daily 4000 mg Salofalk oral.
Started Omeprazole 20 mg February 2007.
Co-Moderator-UC Forum

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