Increasing severity of flares

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perach
Regular Member


Date Joined Apr 2007
Total Posts : 116
   Posted 9/2/2008 9:58 AM (GMT -6)   
Each time I flare, it seems that my symptoms are more severe.  Has anyone else experienced this and do you think this is "normal" for UC?

-Lialda (4 pills/day), canasa, Align probiotic, kefir, multivitamin, calcium with vitamin d, iron


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/2/2008 11:03 AM (GMT -6)   
There is no "normal" with UC. The disease is unpredictable. I went from 10 years of remission to a severe flare.
I know other who have had 25 years of remission only to get sick and yet some will have their worst flare as their first flare.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


quincy
Elite Member


Date Joined May 2003
Total Posts : 31005
   Posted 9/2/2008 11:12 AM (GMT -6)   
Considering your flares get worse, it could mean your maintenance might not be enough.

I would suggest you start using the retention enemas (5-ASA) for treatment now and then taper to a maintenance. With the rectum dealt with fairly quickly, hopefully your flares won't be as severe.

In saying all the above...were you on the Canasa nightly?

Explain how your flares have gotten worse at this time from the first day you thought you were starting to flare again.

quincy
*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 !!!


perach
Regular Member


Date Joined Apr 2007
Total Posts : 116
   Posted 9/2/2008 11:18 AM (GMT -6)   
I take the canasa every morning (do you think nighttime use is better?). Also, I am not currently on enemas at night, but in the past I have used both Rowasa and cortenemas to control a flare (am about to go back on the Rowasa at night again). When I say my flares get worse, it seems to me that each time the pains, the urgency and the inability to tolerate foods are increased. I started to flare just last week and it seems like each of my symptoms is worse, not different just worse. I was wondering if anyone else experienced this, though I know UC is a myterious disease that can't be predicted. Thanks for the responses.
-Lialda (4 pills/day), canasa, Align probiotic, kefir, multivitamin, calcium with vitamin d, iron


quincy
Elite Member


Date Joined May 2003
Total Posts : 31005
   Posted 9/2/2008 11:27 AM (GMT -6)   
Hi....well, it can be somewhat predicted once you tune to the very early symptoms, but it could be tat the canasa just took the edge off some of them not making them as obvious.

Definitely start the enemas nightly until you're "normal"....Hopefully within a week you'll see improvement.

Is your UC throughout?

4 Lialda is a high dosage....did you start at that or increase to that dosage?

quincy
*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 !!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 31005
   Posted 9/2/2008 11:27 AM (GMT -6)   
Oh, ask the doctor for a script of dicyclomine...it'll help with the cramping.

What does your daily diet look like?

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 !!!


perach
Regular Member


Date Joined Apr 2007
Total Posts : 116
   Posted 9/2/2008 11:33 AM (GMT -6)   
I am a vegetarian and during a flare I usually eat a lot yogurt, egg whites, soup and bananas. I eat pretty healthy, though I do eat a ton of carbs (bread, pasta) which I generally seem to tolerate okay. I also eat a lot of soy/meat substitutes and tofu. During my last flare I "cheated" a lot with bad foods like Chinese take out and burritos but I learned my lesson and will not be going that route again!

I will ask for the scrip, thanks for the advice.
-Lialda (4 pills/day), canasa, Align probiotic, kefir, multivitamin, calcium with vitamin d, iron


jcm
New Member


Date Joined May 2006
Total Posts : 15
   Posted 9/2/2008 3:18 PM (GMT -6)   
I was diagnosed in 1994 and each flare is worse than the previous.  The longest remission I've had so far is 1 1/2 years.  This flare started in June and is the worst yet.  Nothing helps.  I've had 2 Humira treatments and am told to be patient, but COME ON!!!  I do NOT think this is normal for people with UC.

Fairbr
New Member


Date Joined Feb 2008
Total Posts : 5
   Posted 9/2/2008 7:56 PM (GMT -6)   
Hi, I am in the same boat as you.I have been having a flare up every 2 months for over a year.Ive been in Hospital 5 times because steroids by mouth arent working so they have to give it to me by IV.I hate it.Im on imuran, lialda, and Humira.Ive been on Humira for 8 weeks and they keep telling me maybe it will kick in.Im about ready to scream.Tomorrow I have to go have a pick put in my arm so I can get steroids at home to keep me out of Hospital.I told my doctor Ive had enough and just do the surgery but he backs off.he said they dont usually do surgery for UC.Is this true?Now he wants me to try another druf Sinzia or Simplicity whatever that is.Any Suggestions? Fairbr

perach
Regular Member


Date Joined Apr 2007
Total Posts : 116
   Posted 9/3/2008 6:48 AM (GMT -6)   
Fairbr-sorry to hear you are going through such a rough time. As for surgery, I have never seriously considered it myself so I wouldn't want to comment on it. But many people on here know all about it and hopefully one of them will see this post and give you some words of wisdom. One thing is-have you tried rectal meds? I have found rowasa and cortenemas to be very effective in the past.
-Lialda (4 pills/day), canasa, Align probiotic, kefir, multivitamin, calcium with vitamin d, iron


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/3/2008 8:16 AM (GMT -6)   
Fairbr,

You need a new GI. Surgery is performed in about 20-30% of UC patients for refractive disease. You as the patient can always ask your GI for a surgical consult. He or she has to refer you out if you ask. There are many options for surgery so it's best to get educated about your choices. You might want to visit www.jpouch.org where you can learn more about the jpouch, kpouch, and permanent ostomy.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Fairbr
New Member


Date Joined Feb 2008
Total Posts : 5
   Posted 9/3/2008 10:39 AM (GMT -6)   
Hi,Thanks for your replys.I got strong and called a surgeon today to talk about possible options for surgery.I have an appt. in 2 weeks.Hopefully I can get off of thes drugs they pump you up with, I feel like a guinea pig.I just want to be able to go to work or for a walk without having to worry if Ill make it to the bathroom.Fairbr
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