This site has helped me ALOT.... more help still needed!!

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cpaarchie
Regular Member


Date Joined May 2008
Total Posts : 102
   Posted 6/15/2008 10:51 AM (GMT -6)   
Hi everyone.  I joined this site a little over a month ago and for awhile, was online multiple times daily.  Many of you have been very, very helpful - I've been in what I would consider a fairly mild flare since March (3-5 BMs a day, usually soft, sometimes "D").  I'm on a probiotic and was taking 9 colozal daily.  Many of you indicated I needed a stronger probiotic (i've been taking the cheapest one available at CVS) and some of you also suggested lowering my dose of colozal to 6-7 a day.
 
I took this advice - still haven't found a better probiotic, but I've been taking 3 to get a higher dosage and I also dropped my colozal to 7 a day, and I have to admit, I had been feeling GREAT.  Things really seemed to turn the corner to the point where I would look forward to each day again rather than sitting around feeling sorry for myself.
 
The problem - this past week, I got a little excessive with some alcohol (primarily beer) and now the past few days, I seem to be back where I was before.  Again, my symptoms are relatively mild - no bleeding, less than 5 BM's a day, not alot of pain/fatigue, but I'm still not feeling "normal" and it frustrates me.  I'm thinking the alcohol likely has something to do with this...... but just tired of being so concerned about my poop!
 
Any comments/advice?  I've been less than impressed with what my doctor has to say, don't really feel like making another appointment to consult with him (especially since I'd need to start the conversation.... "well, last Tuesday night I had 8 beers...").
 
Thanks!!!!
 
 
- Diagnosed with moderate left-sided colitis - November 2007
- Colazal 3 (3 times daily)
- Probiotic


bap06
Regular Member


Date Joined Jun 2008
Total Posts : 57
   Posted 6/15/2008 11:10 AM (GMT -6)   
Hello!

I am also newly diagnosed, so I'm still trying to figure all this out, too, but I'll give you my thoughts... I'm just coming out of a flare as well, and I am now completely overanalyzing everything that is happening with my body. Things I never thought about before. My stomach grumbles, and I get stressed, which I know isn't good for me either! Before my diagnosis, I wouldn't have given a grumbling stomach or a day of loose BM much thought. Now I worry it's a new flare, or that this flare isn't over. Last weekend, I indulged in a few too many margaritas, and had a few days after that of returning symptoms. They did go away, and I'm feeling well again, so hopefully you are on the same path. Good luck, and hope you continue to "feel normal" as you said!
*Diagnosed 10/07 (6 months pregnant w/ 2nd baby)
*Asacol (4 pills 3x a day)
Canasa
Prilosec
Calcium, multivitamin


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/15/2008 11:17 AM (GMT -6)   
I've heard beer can be bad for some. I think it's the yeast. Try to stay away from it from now on. With the probiotics, maybe you can find a low priced one with a high bacteria count. I got one with a super high bacteria count for about 24.00 at GNC. Good luck, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: symptoms have subsided for the most part
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1, Canasa (sometimes) Vitamins:  Calcium 600 + D X 2, One a Day Women's X 1, Citrucel, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/15/2008 11:45 AM (GMT -6)   
Alcoholic beverages tend to bother a lot of us, and especially beer. If you drink, try wine or even a light mixed drink instead. Then again, there are some of us who don't tolerate liquor at all. Or try one or two beers. Usually, anything I add back into my diet, I take just a small portion at first, wait a week or so, then try a little more. You may find that you can drink a couple of beers, but not eight.

In UC, the key to everything tends to be moderation.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 6/15/2008 1:40 PM (GMT -6)   
You should also be on rectal meds.
Plus, lowering the dosage too quickly might be part of it. Usually one pill every week or two is how to do it.

Have you been forgetting to take any of the Colazal dosages?

Rectal meds.

Alcohol is a stimulant....it also isn't so good for the liver. Small amounts over a long period of time is easier for the body and liver to metabolise.

Rectal meds.

You have some choices in how you feel.....but try not to make it all about one thing...you really aren't on a complete regimen of meds.

Did I mention rectal meds? Call your doc, request Rowasa (or the generic 5ASA) to start and use them nightly until you start to feel normal. They should be tapered to find a maintenance dosage for you.

Diet will sometimes alter stool consistency, etc. But not bleeding...if you are doing so, you're flaring.

Hope you contact your doc soon.
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 !!!


cpaarchie
Regular Member


Date Joined May 2008
Total Posts : 102
   Posted 6/16/2008 9:01 PM (GMT -6)   

Quincy - you seem pretty adamant that rectal meds are the way to go.  From my prior experience, my doctor only said these were necessary if there was bleeding that was difficult to control.  He basically brushed it off and said "you probably don't want to go there..."

I guess my biggest question - the rectal meds that you mention - are these taken daily?  Do you apply them yourself?  Just wondering how often these need to be taken and if they can be done yourself.  Also............ does it just make your stools more firm and less frequent? 

Also.... for others out there, how many of you take rectal meds and do they work for you????


- Diagnosed with moderate left-sided colitis - November 2007
- Colazal 3 (3 times daily)
- Probiotic


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 6/17/2008 12:20 AM (GMT -6)   
Well, I hadn't bled with a flare for over 14 years until last year when I decided to totally stop my estrogen patch....I was a tad shocked.

I've used the oral and rectal 5ASA meds for over 19 years....so, yes, they work.

There are different kinds of rectal meds...suppositories, retention enemas (both in steroid and 5ASA medications), and a foam which is in a steroid medication.

Your doc's aversion shouldn't be telling you what to do....especially if he's never offered them or you've never tried them.

At least he didn't put you on prednisone firstly....or did he?

Consider that UC starts at the rectum. If it's not dealt with, no matter how many oral meds (not including pred) you take, it'll NEVER be enough to touch the rectum. It also doesn't matter how high the inflammation is...beit limited to the rectum or pancolitis....the distal part of the colon should be dealt with rectally.

You administer them yourself....yes, it takes a while to get used to doing them because a pill is definitely easier.

They're taken nightly (enemas) and retained,,hopefully...overnight. As the rectum heals, the urgency to expel lessens and the longer one is able to retain them. The retention enemas (as well as the foam) will go as high as or even a bit beyond the sigmoid...which is a good thing.

Suppositories are an option, but I see them more for maintenance (personal perspective)...they can be used up to 3 times a day.

Do the homework, and request them....try them yourself.

As the inflammation lessens, the stools do tend to firm up and frequency is less.

Some who are on Colazal find that 9 daily can give them looser stools.

Have you considered to add a fibre supplement or probiotic?

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 !!!


tooth fairy
Regular Member


Date Joined Jan 2008
Total Posts : 98
   Posted 6/17/2008 6:06 AM (GMT -6)   
cpaarchie, I can't tolerate alcohol unless I am completely in remission. when my symptoms are totally gone I can pretty much do as I please, but any time I'm still rumbly or having any problems I have to watch both my caffeine and alcohol intake. a lot of forum members say the same thing about dairy products.

as for the rectal meds, I have added rowasa since early this year and it's given me the best few months I've had so far. I wish my GI and I had tried them earlier, actually. Don't love the actual delivery process (yuck), but I am convinced rowasa is what sealed the deal for me.

Rectal meds help a lot of people since the asacol often doesn't reach the last bit of the colon. My scope in feb showed my pancolitis was just active in the last 2 inches of my bowel-so your asacol may not be delivered to everywhere it needs to go. Best of luck to you!
Erica, 31
Pancolitis, diagnosed July 2006, at age 29
Imuran, Asacol, Rowasa*(new!)
Experimenting with diet, live culture yogurt and probiotics


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 6/17/2008 8:17 AM (GMT -6)   
I have to agree with Quincy. Rectal meds get the meds directly to the area that needs it the most. The problem with oral meds is some may not make it as far down your colon as needed.

I have used Salofalk sup. and they worked very well for controlling BM and stop the bleeding.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 6/17/2008 8:28 AM (GMT -6)   
In my experience, Colazal and Asacol did nothing for me, whereas Rowasa became my best friend overnight. I couldn't have gotten through my flares without it.

cpaarchie
Regular Member


Date Joined May 2008
Total Posts : 102
   Posted 6/17/2008 3:04 PM (GMT -6)   

So are you just using the rectal meds during flares, or more as a maintenance drug that is taken daily regardless your symptoms?

At the end of the day, I'm open to trying these things, I'm just not sure my doctor will automatically prescribe them without having me come in for a consultation.  He has a tendency to go overboard it seems too (last time I just told him I was having a few minor issues with urgency and loose stools he acted like he wanted to scope me again, and my symptoms are not that bad...).

Thank you all for your responses!!!!


- Diagnosed with moderate left-sided colitis - November 2007
- Colazal 3 (3 times daily)
- Probiotic

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