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tummy2
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 7/9/2009 10:03 PM (GMT -6)   
I feel like there is more I can be doing, but I don't know what. I'm super conscious of my diet, exercise and do yoga daily. Try to keep up energy, but I feel really tired.

I don't think my flares are bad, compared to what I read about. I go to the bathroom twice a day... but often have additional like, passings (don't know how to describe exactly) of blood and tissue throughout the day, with a lot of discomfort, bloating and frustration.

So here are the questions I have:

Because I'm flaring, does this mean that the Lialda is not working anymore?
Do I need to get another colonoscopy/ go to the doctor?
Does anyone know a great doc in the Chicago area?
Does having another flare mean the UC is necessarily getting 'worse' or will it always be mild? When do people start having to take Pred? I'm scared of the side-effects.
23 year old female, currently flaring (June 2009)
Diagnosed with UC at age 20
I've had flares a few (maybe 5) times since first diagnosed.
Switched from suppositories to Lialda last year.
(Lialda 4x/day when flaring, 2x/day as prevention when not flaring)
The last sigmoidoscopy, the doctor said the UC 'moved up further' but that it was okay (?)

Post Edited (tummy2) : 7/9/2009 10:18:19 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 7/9/2009 11:36 PM (GMT -6)   
you should be on both Lialda and a more effective rectal med such as Rowasa.
It doesn't mean Lialda isn't working...necessarily, it could mean you're not on the right combo.

I personally think your oral dosage is too high and the rectal dosage obviously too "low" considering it's zilch.

I've never taken pred, and even at 20x bloody diarrhea daily the doc never considered it either.

Try not to get desperate with pred...get serious about a proper treatment of oral and rectal 5ASA meds.


Hang tough...it takes a while to get the meds straight....although I'm questioning your doc's logic as to why you weren't upgraded to the retention enemas plus the Lialda. The oral/rectal treatment option's been around for over 20 years. Nothing new.

Ask your doctor for both and don't even consider pred or other for a long time yet (better never, however)

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


tummy2
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 7/10/2009 6:47 AM (GMT -6)   
Thank you for the information. I appreciate the reassurance about not having to go to the more extreme meds. I think it's just nice to have understanding and validation... I've heard that having more outbreaks builds up scar tissue- which is dangerous down the road, is this true?
23 year old female, currently flaring (June 2009)
Diagnosed with UC at age 20
I've had flares a few (maybe 5) times since first diagnosed.
Switched from suppositories to Lialda last year.
(Lialda 4x/day when flaring, 2x/day as prevention when not flaring)
The last sigmoidoscopy, the doctor said the UC 'moved up further' but that it was okay (?)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 7/10/2009 8:42 AM (GMT -6)   
constant inflammation isn't good if it's not treated, but if there is chronic flaring and healing, the cells will have a particular pattern.

I think some have scarring, especially if the submucosal layer is affected by deeper ulcerations. I haven't done research on that, however.

When are you seeing your doc next?

Where was the extent of your original diagnosis and where has it extended to now?

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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