a scare...or just a blip?

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LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 1/16/2009 8:31 PM (GMT -6)   
Well I've been on pred since my diagnosis in mid dec and have been doing really well (aside from slight tenderness). I have had no D at all. I started with 50mg and have since tapered to 35mg. Tomorrow I am down to 30mg.
Tonight, after dinner, out of nowhere I had to old "think I have to fart...nope, more coming" UC rush to the bathroom. To be honest, it's got me a bit scared that it's coming back. I'm really hoping its just a blip or a one time thing. Do any of you on pred every have a bad night, even while you're on it? Or is that usually a sign of heading back downhill. I don't want to stay on it and I don't want to go back into a flare.
I also leave for my ski trip in two days, so the timing of this couldn't be any worse. I'm really trying to put it in the back of my head and just tell myself it was nothing, that its still possible this will happen time to time w/o going into a full flare. After all, I AM still on pred and that SHOULD keep things under control .... I hope???
 
 
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - currently feeling ok
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg 45mg 40mg 35mg day - Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 1/17/2009 2:04 AM (GMT -6)   
Hi...It seems it's normal for one to have some setback of symptoms while tapering pred.

I would suggest you request some rectal meds from the doc...maybe the proctofoam nightly while you're tapering...

Have you not been on any rectal meds before you tried the pred?

Maybe stay at the 35mg until you're back from your ski trip..or up it to 40 and reduce it to 35 when you come back.

I didn't ask, but could the stool consistency be from something you ate the day before?

You could try to add a fibre supplement to bulk up the stool a bit....
Or...up your probiotics.

Hope you feel better soon,
quincy
*Heather* Status..Asacol  (3 twice daily); flaring /Dec 22, tapered to every 3rd nite/ Jan 13
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 1/17/2009 11:04 AM (GMT -6)   
No, I have never been on rectal meds. I was told I have pancolitis, so I don't know if they would help or not.
I can't ask now, my Dr. won't be in on Saturday and I leave Sunday. I also don't want to change my dose of pred without speaking with him. I only have enough for the taper he told me to do. I will talk to him this week if it keeps up.
 
I checked my food diary and highlighted a couple things. I will be on my best behaviour with what I eat while I'm on this trip and hopefully hold out. It's discouraging to see when I was feeling so good, but I'll try to not let it get me dow as that will only add to it I think.... confused   I have probiotics here, so I will try to up them today before I leave.
 
Thanks for the suggestions :)
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - currently feeling ok
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg 45mg 40mg 35mg day - Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 1/17/2009 12:26 PM (GMT -6)   
     I'm in agreement with Sherry.  Maybe the rectal meds wouldn't help in your situation.  Only your doctor could answer that question.  Watch what you eat carefully.  I know it's a pain  but we all have to do what we gotta do.  Crabcakes and cole slaw seem to be no no's for me.  Too much fiber can irritate me too.  Good luck and have fun on the trip.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 1/17/2009 12:35 PM (GMT -6)   
yes, rectal meds would help....pancolitis or not...we have discussed the issue a LOT. When you get back, make an appointment with your doc to have a plan for when symptoms return after tapering. Maybe you would be able to avoid pred in the future if the doc gets you on rectal meds plus oral...I would opt for the 5-ASA meds...but I'm biased.

Try to enjoy your ski tRIP!

q
*Heather* Status..Asacol  (3 twice daily); flaring /Dec 22, tapered to every 3rd nite/ Jan 13
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 1/17/2009 12:43 PM (GMT -6)   
     Whoops I meant Heather, sorry about that Heather.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 1/17/2009 1:13 PM (GMT -6)   

I will def talk to my doctor when I get back about different options.

Thanks for the suggestions. I'll be watching what I eat now today and for the whole trip. Here's to hoping I make it through without incident.

Thanks again...

 

 


Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - currently feeling ok
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg 45mg 40mg 35mg day - Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/17/2009 3:32 PM (GMT -6)   
I've been on prednisone for almost two years and each time I taper a bit there is a bit of a change, but I know my body well enough for signs of relapse. Just monitor your trigger foods and take some immodium for your ski trip. That's what I would do. I had to double up the immodium to get me through my night classes and trip home.

Just be cautious with your tapers and really pay attention to the changes occurring. It is very easy to ignore certain symptoms and signs b/c we're so eager to get off the steroids. I was in major denial that I was heading for a bad flare, and had to double my prednisone again. Grr.

Good Luck!!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!

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