Guidance wanted

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Regular Member

Date Joined Mar 2004
Total Posts : 265
   Posted 11/7/2007 8:02 PM (GMT -7)   
I haven't posted to this board very often over the past 2-3 years because I have been feeling really good. I was on Asacol (6 a day) and Prevacid. I went off the Prevacid when I started breastfeeding my son about 21 months ago without much issue. After speaking with my GI, we decided to go off of the Asacol. I tapered it for a week and have been off of it for about 2 weeks now. I have noticed increased diarrhea (not regularly, but more intense than while on the meds), more difficulty with nausea or bloating after eating some meals, and a burning on my right side above my hip. It's a very dull pain that I don't even notice all the time. I'm also feeling a bit more run down, but with a toddler and a husband who is working extra shifts the last few weeks, that may be normal. I tend to be very sensitive to feelings I have in my body and am starting to stress about going off the meds.

Crazy thing is that I had a scope done in June and everything was clear. Plus, my original problems were in the small intestine and terminal ileum so I probably should have been on Pentasa, but stayed on the Asacol since it was working.

Do you think I should call my GI and ask to be put back on the meds or should I wait it out longer?


Veteran Member

Date Joined Nov 2007
Total Posts : 4384
   Posted 11/7/2007 8:42 PM (GMT -7)   
What was the reason for going off the Asacol? Are you all through with breastfeeding? I know the meds are expensive, but if it makes you feel better and can potentially prevent a relapse, then why not take it?
48 yr. old female, diagnosed with Crohn's Sept-Oct. 2007

Regular Member

Date Joined Mar 2004
Total Posts : 265
   Posted 11/7/2007 9:56 PM (GMT -7)   
Thanks for your reply. I'm still breastfeeding, but that wasn't the reason to go off of it. We decided to try going off of it because I was in remission and my GI doubted that the Asacol was doing much to keep me there. Now I am wondering whether we were wrong, but am afraid I'm too sensitive to changes and blaming not being on the meds. I don't know. Is 2 weeks enough to make a difference if my last scope showed no inflammation?

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 11/7/2007 10:46 PM (GMT -7)   
Hi Curly, good to see you again. I dont have any input about breastfeeding because I was too young to recall. You may be stressing about not being on the meds. We are sometimes our worse enemies.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 11/8/2007 2:29 AM (GMT -7)   
Hi If you are having noticeable symnptoms then yes I would call .The scopes cannot tell a Dr. everything that is going on. I breast fed for a year and then went to the cup maybe weaning your child might help give you the extra boost you need. How much longer are you planning to breast feed? I hope you continue with good health. lol gail

Regular Member

Date Joined Oct 2007
Total Posts : 82
   Posted 11/8/2007 11:17 AM (GMT -7)   

I'm relatively new to this forum, but I'm confused why any gastro would take you off of Asacol.  I've always been told that if you have Crohn's, then you should be on Asacol, or some 5-ASA drug, forever.   The side affects, for most people, are few, if any, so if you weren't having any side affects, why would you stop taking it? 

To me, that's like an endocrinologist telling a severe diabetic they don't really need their insulin...  You always take the 5-ASA drug, matter how good or bad you feel....unless your system can't tolerate it.

Have other people's gastros said 'you don't need the 5-ASA drugs anymore'?

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 11/8/2007 11:23 AM (GMT -7)   
I know exactly how you feel. I had my second resection and my old GI (now fired) figured that since I had had surgery I no longer needed to take the Asacol. So I stopped it and within a few weeks started feeling bad again. Went back on the Asacol and started feeling better again in no time. It helps to keep the inflammation down and has few to no side effects.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Regular Member

Date Joined Jul 2007
Total Posts : 456
   Posted 11/8/2007 12:27 PM (GMT -7)   
"Have other people's gastros said 'you don't need the 5-ASA drugs anymore'?"
My GI has suggested that once we get me under control that I could at least reduce the Pentasa, if not go off all together.  Some feel that it's so mild that it doesn't really help us.  I don't know about other 5-ASAs, but there is no generic for Pentasa, so it can get pretty expensive, too.
Personally, I want to stay on it.  My prescription plan is so good that cost isn't really an issue for me.  And I'd rather take something that might not be doing much than take a chance and upset the apple cart.

Regular Member

Date Joined Oct 2007
Total Posts : 289
   Posted 11/8/2007 2:49 PM (GMT -7)   
Hello,I continued on Asacol during pregnancy and breastfeeding ( 3 years ago) ,and I'm still on it,and my GI says that's one I'll probaly always be on,which I won't complain. As far as the burning sensation,I get that sometimes too in the same place as you,my last scope was in September,and ofcoarse I had inflammation,and a small stricture,I ALWAYS have,and I ALWAYS will,aggghhh!!!!!  Hang in there :-)

Regular Member

Date Joined Oct 2007
Total Posts : 289
   Posted 11/8/2007 2:55 PM (GMT -7)   
Hello,I continued on Asacol during pregnancy and breastfeed

Veteran Member

Date Joined Nov 2005
Total Posts : 1340
   Posted 11/8/2007 8:23 PM (GMT -7)   
I'm in a similar boat. I've been in remission for a while and had clean scope. My GI (after some begging on my part, I admit) let me drop my dose of Pentasa (10/day from 15/day). His theory is it doesn't hurt to stay on it, and even though it really did nothing for my earlier major flare, it can help fend off mild disease should it pop back up.

I do notice symptoms tend to pop of if I miss a few doses. Always mild symptoms and they tend to go away if I make sure to take all 10 Pentasas and not just 5. It couldn't hurt to go back on some amount of Asacol or Pentasa (other than the cost).

Hope you feel better soon.

Currently in remission!

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