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fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 2/26/2009 4:12 PM (GMT -6)   
In the short time I've been here, I've come to regard you as the "queen" of using 5-ASAs from both ends (that's meant as a compliment!).  In my "Think I'm heading into remission" post, you mentioned that it took you some time to learn to use the enemas early on when you started to get symptoms.
 
I'm thinking ahead to what I need to do when my next flare (which is hopefully a looooong way away) begins.  I know I need to talk to my doctor about this, too, but I also think that others' personal experience is valuable.  As my main symptom is diarrhea, I imagine that if I have diarrhea that lasts longer than 24 hours, I'll go ahead and assume it's the beginning of a flare and increase the dose of my meds. 
 
I guess what I'm asking is what do you do when you think you're starting a flare?  How do you figure out if it's a flare or if it's something else?  How long do you wait before you up your meds (ie, wait to figure out if it's a virus or something)?
 
Sorry for all of the questions.  I know I'm probably over thinking this, but I'm very much so a planner! :)
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30705
   Posted 2/26/2009 4:45 PM (GMT -6)   
Hi....basically, the learning process was when I was tapering. By tapering, it's in actual effect the maintenance.

Early on, I realised that I couldn't get off the enemas or off the Asacol...so, that was part of the up and down process the first few years.

I pretty much plan things out on my calendar. I mark out nightly for sure 3 - 4 weeks. I've gotten cocky in the past year and tapered quickly...but that's the process I'd chosen, humbling me once again.
No biggie. back to square one.

OK, back to the calendar....I add if I have to, white-out as needed..etc.
I NEVER leave anything to remembering...documented is better for me, as well, I can look back as to my flares, etc.

When I'm normal once again, I then mark every second night out on the calendar for 3 weeks....change as necessary. The same process applies...if I'm normal for that length of time, I may choose to go every 3 weeks, or stay another week at every second night then mark every third night for 3 weeks..etc.

My earliest symptoms are stomach discomfort that's consistent related to lots of gas and inconsistent bms kind of like constipation, play-dough (coining Sherry's description)bms, thin bms, then increased bms/frequency, urgency, rectal discomfort, throbbing and of course white-knuckling bms. Diarrhea would usually come quickly during the first few years...but since my flares are now limited to low in the rectum, the symptoms are different than they used to be. Probably because I used to hope the symptoms would disappear, as well, I didn't know what to expect until the most obvious which was diarrhea and bleeding.

I don't mind being called the rectal med queen....Bob actually used to call me the high priestess of rectal meds...lol!

The "bottom" line is whatever is consistent, try to assume it's maybe "something". You will get better at it as you go along.

The tapering method is really to find your maintenance....for me, that varies depending on what's going on in my life.

Increasing rectal meds is how I deal with flares.....the oral meds, I've only increased to 8 daily once in 20 years to deal with the flare, then back down to 6 daily. I don't worry about the oral dosage unless there's something wonky. I only take them twice a day...that way I don't forget (OK, I've done so on occasion, but not as I would if I were taking them 3X daily).

Unfortunately, experience is your best teacher....as you look back, you'll realise your symptoms and what they mean. Food sometimes can mimic UC, if it is food, the symptoms won't last past a day or two.

Hope this helps....if I've forgotten anything or you need clarification, ask. I tend to have verbal diarrhea.

Oh, using the rectal meds on a constant basis to decrease/increase....isn't a failure, it's just listening to your symptoms and dealing with them as such.

I'm a med-lifer...you may not be. But you'll have to find out what your UC needs in order to keep inflammation down to a minimum for as long as possible.

I also see using 5ASA meds as a prevention of cancer....I also have UC-related liver disease, both of which can increase the likelihood of cancer. I use them as hopefully a prevention.
I also believe that keeping my UC inflammation at a minimum will also help keep the PSC acceleration to a minimum as well.

A lot of hopes in a type of med...but I can use it, and to me, that's better in the long run....but it takes commitment and acceptance of that they're what's needed.

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 !!!
 


nucid
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 2/26/2009 5:03 PM (GMT -6)   
How does UC cause "UC related liver disease?"
Female 33 Married
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X

"The Lord is my Shepherd"


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 2/26/2009 5:14 PM (GMT -6)   
Thanks, quincy, for the response and for taking the time to give so much info! I've pretty much accepted the fact that I'll be taking medicine every day for the rest of my life to keep my UC in check. If that turns out to not be the case, then great! But, I'd MUCH rather take medicine every day than deal with flares.

It does make a lot of sense to increase the rectal meds first, since flares start in the rectum. Also, my doctor said (as I'm sure you know) that the rectal meds are so much more effective than the oral meds. I just wish a rectal med existed that could reach the entire colon! :)
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30705
   Posted 2/26/2009 5:21 PM (GMT -6)   
nucid said...
How does UC cause "UC related liver disease?"

UC doesn't cause it....it's a nice-little package.  Some things like company.  It's an extra-intestinal disease that tends to come with UC.  Not all with UC get liver disease, one is more inclined to makes (but I'm female, but doesn't discount the fact).  Many with PSC have UC, but diagnosed after the PSC diagnoses...Now, which came first???  That's the million dollar question. 
 
As well...I have a possibility of two liver diseases...PSC or PBC (you'll have to do the research on it)...because visually and medically I have PSC...but marker-wise I have PBC.  I could also have another autoimmune disease (being tested for Sjogren's) which is thought to also be related to PSC and maybe UC.
 
My dad had and my sister has ankylosing Spondylitis (AS)...so, there's another connection to why I might have UC.  I don't have AS as of some marker tests in the long past.
 
hope this helps.
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 : 30705
   Posted 2/26/2009 5:26 PM (GMT -6)   
fruitgirl said...
Thanks, quincy, for the response and for taking the time to give so much info! I've pretty much accepted the fact that I'll be taking medicine every day for the rest of my life to keep my UC in check. If that turns out to not be the case, then great! But, I'd MUCH rather take medicine every day than deal with flares.

It does make a lot of sense to increase the rectal meds first, since flares start in the rectum. Also, my doctor said (as I'm sure you know) that the rectal meds are so much more effective than the oral meds. I just wish a rectal med existed that could reach the entire colon! :)

You're welcome.  Rectal meds wouldn't reach the entire 5 - 6 feet of colon...unless you used a gallon of medication while standing on your head.  I'll take just the lower part small amount of med, thank you.  Takes me less than 10 seconds to insert...
 
You might be to the point of using maintenance enemas once a week....if that's the price, then be it.  Some can get off the rectal meds...it's worth for you to try in the future.
 
You might be able to lower the Asacol to maybe 8 if you take it twice a day....it all depends on what you want to lower.
 
When was your last C-scope?  What was the outcome?
 
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 !!!
 

Post Edited (quincy) : 2/27/2009 12:13:26 AM (GMT-7)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 2/26/2009 5:48 PM (GMT -6)   
My last (and first!) C-scope was on January 28. It showed that my entire colon was affected. My doctor didn't put a "mild, moderate, severe" classification on it (as he doesn't really think that "matters too much and after he explained himself, I agree), but did say that I had quite a few tiny ulcers.

I guess I'll just have to play around with everything and see what happens. I am going to wait a bit longer to start tapering anything. I still haven't had a BM today (it's after 2:30 pm), but I want to wait until the consistency is a bit more normal. I guess I'm a bit chicken!

My doc gave me the ok to start tapering the Rowasa when I feel I'm back to normal, but to wait to reduce the Asacol until my next appointment on April 6. I think that I'd rather use enemas 1-3x's per week and keep the Asacol dose lower than keep the Asacol higher and not use enemas. I guess I have it in my head that the enemas are a bit easier on the kidneys long term than the oral meds are.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30705
   Posted 2/27/2009 2:12 AM (GMT -6)   
It's definitely a learning process....and I would suggest that if you are to taper the oral meds, you do so when you're staying at a steady rectal dosage and that you've been normal for a while.

But, if you taper by one pill a month...you will have more control and probably less symptoms. For pancolitis, I would think that 8 daily would be optimum. at least you can increase by two if needed as needed of the rectal meds aren't doing the complete trick.

As well, with 12 being the highest dosage, if you have wiggle room to taper and increase there as well...that's a good thing.

Keep us posted as to how you're doing.

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 !!!
 

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