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I've had an AH-HA moment!

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Ulcerative Colitis
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Posted 10/6/2009 12:32 PM (GMT 0)
I have been in remission since last April according to my colonoscopy but yet I was still having D almost everyday with intestinal cramps.  The doc thinks I may have IBS in addition to UC.  So then I got thinking...I used to take Asacol before switching to Colazal.  I had to stop taking Asacol because it was giving me major D and an overall flu like feeling. 

So I started doing a little experiment.  I decided to start reducing my Colazal thinking that maybe my body is not liking the Colazal anymore because of my history with Asacol.  I have not mentioned this to my GI because I know he wouldn't approve of it since it took him a long long time to realize that I just can not handle mesalamines.  Btw, I do NOT recommend any of you do what I am doing.  I have had Uc for a long time and I feel comfortable with my treatment knowledge as well as my knowledge of how my body works.

So for the past couple weeks, I have been slowly decreasing my Colazal.  I was on 9 a day and now I'm at 7.  And guess what? My D has stopped!  I am now having solid bm's again.  Not perfect but it is much much better then what it was.  My intestinal cramping is now almost nil.  It still acts up on occasion but not with the painful punch like it was doing.  I plan on staying at 7 a day for a while to be sure that my body is not going to be negatively affected.  Oh and also my daily headaches have been lessening as well. 

I am thinking now that it is just not mesalamines that I can't tolerate but all 5-ASA's.   idea

I just had to share my Ah-ha moment... smilewinkgrin

Posted 10/6/2009 1:29 PM (GMT 0)
Hey Sherry; glad to hear that you are making improvements with the d. I too have a problem with taking Asacol -- what a great ah-ha moment you had!

Posted 10/6/2009 1:43 PM (GMT 0)
I just recently started having problems with both Lialda and Canasa causing "d" and also some cramping - it took me a while to figure that out too. It is strange because for a long time both those drugs helped me...
Posted 10/6/2009 2:05 PM (GMT 0)
My stools are much more formed on 6 Colazal a day than they were on 9. Glad it's helping you!
Posted 10/6/2009 2:13 PM (GMT 0)
My GI started me on 9 Colazal and it caused horrible cramping. I went down to 6 and the cramping was gone!
Posted 10/6/2009 2:21 PM (GMT 0)
Thanks! Keep your fingers crossed that I can successfully wean down to 6 - that is my goal. Last time I started reducing, I was still in a mild flare and my body didn't like it but since I'm in remission I thought I would try it again.
Posted 10/6/2009 3:34 PM (GMT 0)
Glad it seems to be working!!!!!!!!!!!!!!!!!!!!!!
Posted 10/6/2009 3:49 PM (GMT 0)
I want to drop to 6/7 but I have the opposite situation. I hope you continue to improve. turn
Posted 10/6/2009 5:36 PM (GMT 0)
Sometimes you have to be your own advocate and do what you gotta do! Hope things keep improving :)
Posted 10/6/2009 6:32 PM (GMT 0)
I believe that starting at high dosages can cause more problems than starting at lower dosages and increasing slowly.

We all have an optimum amount we can tolerate....6 seems to be the magic number with Colazal....interesting.

quincy
Posted 10/6/2009 6:51 PM (GMT 0)

I also had the same problem with Asacol that Sherry had.  I was changed to Colazal several years ago and I started at 9 and now I take 18 a day.  I have been at this does since April of this year.  No problems so far.

Posted 10/6/2009 8:41 PM (GMT 0)
18??? Holy cow that's high! And you have no issues at that high of a dosage?
Posted 10/6/2009 11:08 PM (GMT 0)
I am so glad to hear that you have found something that is working for you. I hope it continues to work on the smaller dosage.
Posted 10/6/2009 11:28 PM (GMT 0)
Sherry, I have that same feeling about me with 5-ASA's. I just don't think my body handles it well at all. I end up going backwards with in a week of taking them. Asacol did that with me, and then the Canasa I was taking gave me horrible cramps and was making me bleed more than normal. Doesn't it just suck! At least u figured something out though. Glad to hear u r doing better. :)
Posted 10/7/2009 12:53 AM (GMT 0)
I've been on Canasa for a couple of months. I've also got terrible gas/bloating problems (late afternoons and evenings) and constipation (also later afternoon/evening). And frequent headaches.
Could the canasa be the reason for this? I'm scheduled to take it until the end of this month.
Best always!
Teacher
Posted 10/7/2009 1:51 AM (GMT 0)
I tapered and stopped Penatasa after 7 years and feel better in terms of D and overall wellbeing. Mesalamine - friend or foe?!
Posted 10/7/2009 4:52 AM (GMT 0)
5 ASA....Definitely my friend....

teacher...I wouldn't say it's the Canasa if you use them at night.

The bloating/gas could be food related, flare related, stress related....

The headaches could be dehydration, tension, cluster headaches (males), sinus infections/issues, seasonal allergies, barometric pressure/weather fluctuations, indoor pollution (I had constant headaches from working in the school...depending on how much dust/air-borned stuff was floating around...as well as the spray polish for the floors. Anacin was my friend!).

Hope you get it figured out because I can relate to your discomfort.

quincy
Posted 10/7/2009 11:21 AM (GMT 0)
Teacher, I've never had those issues when I was able to use Canasa. When I realized that I couldn't take mesalamines; all the symptoms that I did have were in the morning, not the evenings. Headaches may be a possible side effect of Canasa however.


Mitzo, mesalamine is definately a foe where I am concerned!
Posted 10/7/2009 1:57 PM (GMT 0)
Hi Sherry,

I have IBS along with UC, and even when I was in remission from UC I would still have D (taking no meds) from the IBS.  My mother-in-law told me that she tried a product called Florastor for her digestive issues and that it firmed things right up.  I tried it, and it really made a difference with my IBS.  It's like a probiotic, except that it uses yeast in the intestines rather than bacteria in the colon.  I had never heard of it before she mentioned it, but I guess it's been used and studied internationally for over 50 years.

Anyways, I'm just telling you in case you have to up your UC meds again.  Might be a good supplement to help your IBS.  I hope you continue to have success on 6 pills a day!  It's always exciting to make a new discovery about your condition.  :-)

Katie

Posted 10/7/2009 4:18 PM (GMT 0)
Thanks Katie, I will keep that in mind.
Posted 10/7/2009 10:31 PM (GMT 0)
I have that proble with enemas, I've found. Using them will help kick me out of a flare, but if I keep taking them I still have some problems.
Posted 10/8/2009 4:10 AM (GMT 0)
Good luck with downward Colazal goal, Sherry! All we can do is to try to help ourselves deal with less-than-perfect meds. Originally my gastro wanted me to take 9 Colazal daily, but that gave me such dry mouth, even while drinking water just about every waking hour, that I couldn't keep up the dosage. I also had a few instances of early AM dizziness plus eyelids puffing up/itching from it. When the flare finally died down, I reduced Colazal to 3 capsules daily, which kept me in remission for 20 months. Then I had to deal with the generic due to health insurance requirements & got sick again from THAT! Back now on brandname after struggle with insurer; formula seems to have been changed somewhat in the meantime. My feeling is that 5-ASAs CAN cause us major issues (remember Beth75's kidney dysfunction?) so we just have to beware & not gulp them down mindlessly. Hope you continue to feel better taking fewer pills. / Old Hat (30 yrs with left-sided UC ... [etc.])
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