UC Flare Symptom Diary

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dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/11/2009 10:17 AM (GMT -6)   
http://www.rowasa.com/about_flare.html
 
This looks interesting!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission???
Asacol 12 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: April 1
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2153
   Posted 3/11/2009 10:26 AM (GMT -6)   
I got "this page cannot be found". I'll try to search for it and see if I can find it myself.
ack, 42, Vancouver BC
 
DX: UC (Pancolitis) as of Jan2009.  Symptoms first began June 2008.
Current Meds:  Asacol 800 mg (1 pill x 4 daily), Ferrous Sulfate



IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 3/11/2009 10:34 AM (GMT -6)   
When you click on the link, it will open in a new tab. When it pops up go to the address bar and remove the letters between the words about_flare.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 3 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)
- Canasa 1000mg @night. Started Oct. 23, 2008
- Niferex-150 Forte 1 capsule 2x Daily


Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2153
   Posted 3/11/2009 10:41 AM (GMT -6)   
That worked Indiana, thanks!
ack, 42, Vancouver BC
 
DX: UC (Pancolitis) as of Jan2009.  Symptoms first began June 2008.
Current Meds:  Asacol 800 mg (1 pill x 4 daily), Ferrous Sulfate



kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/13/2009 7:15 PM (GMT -6)   

I wanted to "bump" this up as it could be of great help to many of us....I will take it to my NP - I think she would like to give one to her patients!

 

Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 3/13/2009 8:15 PM (GMT -6)   
If I had bad reactions to mesalamine orally, would the same thing happen if I took it rectally?
31 yr old female currently breastfeeding
Diagnosed 2/29/08 with Mild Universal UC
I've had UC since 2000 but was in remission for most of those 8 years med free
Lialda Colazal & Asacol made symptoms worse, MUCH worse
Not taking any meds for now. May be on 6mp soon?


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 3/14/2009 11:41 AM (GMT -6)   
It's definitely possible AMK...you could request the steroid enemas, either foam or liquid. There is also Entocort, which is a topical oral med...
One can still have side effects, but they shouldn't be as compared to the systemic steroid (pred, etc).

Have you tried the suppositories? they do come in 5ASA (mesalamine), and maybe a low dosage could help...but if you have pancolitis, the area above the rectum will still be inflamed.

When was your last c-scope?

q
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 3/14/2009 11:41 AM (GMT -6)   
Dakota....good idea regarding the flare diary...at least it could be easy to track.

q
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 3/14/2009 3:42 PM (GMT -6)   
Q - my GI never mentioned enemas or supp's, maybe b/c I have pancolitis? My last scope was a year ago. When I met w/my GI 2 weeks ago he said he would do another scope in a year. I wouldn't mind treating from both ends. I should talk to him about that.
31 yr old female currently breastfeeding
Diagnosed 2/29/08 with Mild Universal UC
I've had UC since 2000 but was in remission for most of those 8 years med free
Lialda Colazal & Asacol made symptoms worse, MUCH worse
Not taking any meds for now. May be on 6mp soon?


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 3/14/2009 5:58 PM (GMT -6)   
Absolutely treat from both ends.....maybe he didn't suggest them because you're not responsive to the 5ASA meds.

Regardless...they are an option, first-line (well, should be) and the doctors should offer them regardless.

It's good to discuss it with your doctor.

Doesn't matter if one has limited or universal UC...the rectum/sigmoid can be treated with the rectal meds because the oral meds do not fully treat the rectum.

quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/14/2009 6:26 PM (GMT -6)   

q- are you using any rectal medicines now?  Did not see any on your list.  You know I can't take mesalamines but thinking of asking doc about rectal low dose steroids - preferring suppositories as I think you know but Proctofoam was not too bad.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/14/2009 10:33 PM (GMT -6)   
This was actually something VERY similar to what I try to use to track my flares. My first cycle I actually had a calendar out where I wrote down AM, PM, and night time bms, what they were like, and rated the day. My GI (then) thought it was great when he could just look at it and see progress or lack there of. I also used the calendar to track my pred dosages for the tapers.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission???
Asacol 12 per day,  Azathioprine 50mg, Aciphex, Effexor XR, Forvia, Fibercon, and Culturelle
Remicade: 1st infusion 06/17/08:  Next infusion: April 1
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 3/15/2009 2:28 AM (GMT -6)   
kops2da said...

q- are you using any rectal medicines now?  Did not see any on your list.  You know I can't take mesalamines but thinking of asking doc about rectal low dose steroids - preferring suppositories as I think you know but Proctofoam was not too bad.

ElaineNY


Hi Elaine...oopsie...I changed my siggie a while back..seems I've deleted the Salofalk part. I just added it back, but might not be updated with this post.

 Yes, I'm mildly flaring, been yo-yoing a bit from tapering too fast since Christmas.  I'll be staying on the nightly enemas till the end of the month.    I've been impatient ....it's been mega years since I've had this happen, but I'm a tad stressed because of how I've been feeling physically (which in turn affects me mentally.,I need to get a grip, tongue !) 

I agree, you should consider the supps again.  They're low dosage, and if you can use them, it's way better than nothing.  I think they'd be helpful in tapering the pred.

q


*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

Post Edited (quincy) : 3/15/2009 2:09:35 AM (GMT-6)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/15/2009 8:40 AM (GMT -6)   

Thanks!  Somehow I just didn't think you would go entirely without your rectal meds - see how I am learning about you.  I am sorry you have not been feeling well in general too.  I do know how stress and feeling unwell seems to go around and around with UC symptoms, etc.  Sometimes I think how "funny" it is that what I see in my toilet dictates how I "feel" all day - mentally and physically!! 

Tomorrow is my day with the doctor.  Hope he is patient with me and listens and has time to answer all my questions.  I am writing them down.  I had such a good day yesterday and then this morning woke up with a little nausea and yucky - oh well!  Have a good Sunday!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 

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