Pentasa..darned if I do, darned if I don't!

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snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 1/12/2009 7:01 AM (GMT -7)   
I've been on Pentasa for about 4 years now. My GI says it's not even necessary for me to be on it since I'm on the 'cade now, but I never like to solely depend on one drug. However, over the holidays I experimented with taking fewer, and finally with taking none. My results were the rectal burning I've had for three years (and thought was residual fissure pain) was all but gone. However, after a few days my stool got hard and dry and was hard to pass. I tried to drink more water (up to 3 liters) ad eat more fruit and veggies (which I already eat plenty of) but nothing helped. Yesterday I went back to my full dose and this morning I burned like fire.
 
Sound familiar? Any help out there?
 
Thanks! 
Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/12/2009 10:05 AM (GMT -7)   
I'm sorry you're burning, snappy. No fun, no fun.

I think I remember someone else on here finding relief from Pentasa booty-burns by starting a fiber supplement... I guess it lubed their tract a little bit? I'm pretty sure they used the psyllium stuff like Metamucil, but there's tons out there now. Hopefully they'll come along soon, but just in case I thought I'd throw that out there.

Hope you find some relief soon.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 1/12/2009 10:08 AM (GMT -7)   
Thanks! yeah, one of my theories is that if I continue Pentasa I need to way up my fiber to that of a "normal" person. Right now I'm considering halfing the dose and adding a softener.

Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 1/12/2009 2:12 PM (GMT -7)   
Interesting side effects. I'm on pentasa too, but haven't had any of what you described. I'm not stopping my pentasa any time soon because it doesn't get absorbed systematically and coats the intestines like a cream.

It's hard to tell if pentasa me helps though and if it causes side effs., to be honest.

Can you tolerate a natural raisin bran muffin or something? Maybe some blueberries? They always make me go, but are excellent antioxidants and healing agents.

snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 1/12/2009 2:18 PM (GMT -7)   
Well, I guess unfortunately it does cause side effects for me. Loose stool that burns! Otherwise I have a normal poop. Unfortunately, I think I may either have narrowing due to scarring or have become somewhat addicted to pentasa and my guts don't want to lubricate correctly without it. I hear this can happen with a dependency on stool softeners, so maybe Pentasa too. So, do I want the burn tomorrow or a poop that takes 20 minutes to come out? Hmmmmm.
Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 1/12/2009 4:01 PM (GMT -7)   
Hmmm. It sounds to me as if something might be going on in your ileum. Have you tried phoning your doctor?

In the mean-time, might some nappy-rash cream help? Just rub it around the burning area *before* you use the toilet, and keep applying it throughout the day.

It's nice to see you again.

I.
Co-Moderator Crohn's Forum.

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