Asacol - what should I expect?

I had my first appointment with a GI last Friday and he concluded that he would like for me to try taking Asacol. He said that there were really not any more tests he wanted to put me through because he didn't think they would help lead to a diagnosis. I've had an Upper GI with small bowel follow through which was normal, and also a colonoscopy that showed mild inflammation of my terminal ilieum however the biopsies came back normal...

So with that being said he basically told me that the doctors who are telling me this is IBS are wrong, and he thinks I probably have Crohns due to the inflammation that was shown on my colonoscopy. I haven't responded to any anti-diarrhea meds or Bentyl, so he thinks trying Asacol would be a good test to see if I respond to it at all.

So my question to everyone is, have you tried this medication as well and what were your results? I am taking 800 mg three times a day, and so far I have taken two full days worth of doses. I seem to have less pain than normal and only had 3 BM's yesterday which is pretty good for me. I still am feeling some naseua and my pain is not completely gone, but it is somewhat relieved. I'm wondering how long it will take to really get into my system and have time to work, or if it will really work at all.

Also, if I don't seem to get complete relief do you think that means I don't have Crohns? Or is it possible that some people with Crohns just don't get relief from Asacol??? Thanks in advace

I took Asacol initially when I was diagnosed in 1996, same dosage. At first it seemed to work but later on, probably after my second 3month dose, I wasn't sure if the Asacol was causing the pains I would get or the crohn's.

Eventually, I would only take it when I had some kind of flare-up. Awhile after that, I stopped taking it all together. I watched what I ate more, crossing things off the list.

I don't suggest not taking or doing anything but medicine alone is not going to do it.

About your diagnosis, my understanding is if you have inflammation ONLY in the colon, then it is ulcerative colitis. If you have inflammation in the colon AND small intestine, then it is crohn's.

Geophysicist said:

I took Asacol initially when I was diagnosed in 1996, same dosage. At first it seemed to work but later on, probably after my second 3month dose, I wasn't sure if the Asacol was causing the pains I would get or the crohn's.

Eventually, I would only take it when I had some kind of flare-up. Awhile after that, I stopped taking it all together. I watched what I ate more, crossing things off the list.

I don't suggest not taking or doing anything but medicine alone is not going to do it.

About your diagnosis, my understanding is if you have inflammation ONLY in the colon, then it is ulcerative colitis. If you have inflammation in the colon AND small intestine, then it is crohn's.

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Hi there, welcome to the forum Maybe you could share your story about your diagnosis for us on the Your Story thread so we can get to know you! Hope you join us.

Hi, I haven't tried asacol but I am on Pentasa which is the same active ingredient just made by different people. I understood these to be quite mild drugs for treating mild Crohn's. The pentasa keeps my symptoms at bay but has not put me in remission. So just because the asacol hasn't completely relieved your symptoms doesn't necessarily mean it's not Crohn's. Also I am not sure how long it takes to work because I was on Pred when I started pentasa, but when they upped my dosage I felt the benefits the next day so I guess it is pretty quick. Hope that helps!

Hi,

I'm on Asacol right now, and I have been for about 7 months. I have been taking between 800 x 2 and 800 x 3 mg per day. I must say I haven't really seen the effect of it as of yet. I was on heavy cortisone (Solu-medrol and Prednisone) treatment before I started Asacol, and my symptoms were almost gone by the time I started Asacol. After approximately three months the symptoms started coming back, and I started taking 3 tablets a day to see if that helped. It didn't help at all for me, so my option was then cortisone again, my doctor told me. I then chose to try a diet (no sugar, bread, gluten, potatoes, milk etc.), and found it helped me instantly. From flaring I was better in just a few days, so I must say the change in diet happened much faster and it was much easier to identify it as working than the Asacol. So in my experience, Asacol has only helped me marginally, if at all...

But this is my experience, it may be different for you. Asacol does not have that many side effects, so it should be safe to try it out for you. If it doesn't work you should look into other medications.

Best of luck with the treatment and I really hope you find yourself feeling better very soon!

xoxo

Geophysicist said:

About your diagnosis, my understanding is if you have inflammation ONLY in the colon, then it is ulcerative colitis. If you have inflammation in the colon AND small intestine, then it is crohn's.

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This is not correct, you CAN have crohn's confined to the colon only as it can be in different parts of the colon whilst colitis is confined to one area!!!!

It pisses me off when people come on here and misinform new members!!! Its proper advice they need.....

Hi Emkat8
I am in a similar position to you and am also on the same dose of Asacol. When I had my first appointment with my GI before I'd had any tests done he decided to prescibe me Asacol. He basically said that it may do me some good but it certainly won't do me any harm! I've been on it for 3 months and the only real benifit that I've found is that it has firmed my bms up. I rarely have true d now though my bms are hardly what you'd call healthy! It is better though. The other thing that happend soon after starting Asacol (and I have no idea if they are related or not) is that my head seemed clearer. I'd had brain fog for the 3 months previous since I'd started being ill and then it all seemed to fade. I haven't really had any bad side effects. I have got a strange rash thing behind my ears of little clear pin prick spots but nothing bad!
I hope that the Asacol helps you and that you get more answers soon
Sam

Hiya Emkat

Asacol is the only sulfa free 5 AZA specially formulated for UC and it's a slow release med, I think you'll be ok on it because some of the side effects from 5AZAs result from the sulfa in them.
I've been on it's sister drug Pentasa for 5 years and it's been great for my Crohns and kept me in remission all that time, until I became complacent and stopped taking it! ended up in A&E with a blockage, oh silly me!
so give it a go, you never know til you've tried it!
good luck, stay well
xxx

Joan,
No wonder he didn't prescribe me one of the other drugs in the family- I am allergic to sulfa so this makes perfect sense! Thanks so much for the info :thumleft:

Sam,
I too have noticed somewhat similar effect as you as far as the Asacol helping firm up by BMs. It seems to be effective more times than not in giving me more solid stools. I can't say it has been 100% perfect, but definitely an improvement over what I was feeling before.

Thanks to all who responded for your advice, I really appreciate it

I took it for close to 10 years in combo with 6-MP. Worked for a long time, but I think the last few years it was not doing much. Never had any side effects from it.

I have inflammation in my terminal ileum and was prescribed Asacol by a GI fellow at one practice. When I went to my new GI (much older/more experienced), he told me that Asacol treats inflammation more in the colon. Since my inflammation is in the small intestine, something like Pentasa might work better for me.

I pretty much believe the second doctor, but that's a question I would raise if I were you.

EJ, like Chris once did, takes Asacol and 6mp currently. He's been on this for most of this year and hasn't had any problems. I don't think he's in 100% remission though as he occasionally will still have a little bloody d and his stool is almost always d but usually no more than 3 x daily. Hope it works for you, good luck.

I'm glad that you are getting some benefit from it. That's great to hear!

Hi :biggrin:

Im on asacol, it worked on its own for me well for about 9 months, now i am on other stuff as well.

Hope it helps you, my crohns is only in my lower bowel and i do find that sometimes you see an asacol looking much as it went in, in the loo :lol: so dont be freaked out if that happens

Claire

Cackman888 said:

This is not correct, you CAN have crohn's confined to the colon only as it can be in different parts of the colon whilst colitis is confined to one area!!!!

It pisses me off when people come on here and misinform new members!!! Its proper advice they need.....

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Sorry, That was what my GI told me. Not trying to misinform anyone, just trying to share info. I know I want as much info as I can get!

I just started taking it 5 days ago. I too am allergic to sulfa. I don't really see that much of a difference in the quality of the poo, but the frequency of going to the john has gone down a bit. I can also attribute that to not eating but once or twice a day now too. Don't really feel like it's doing that much. If it does work on the colon more than the small intestine that would make sense because the scope on my colon was clear. Have not noticed any pills coming out the same way they went in, but read it on the side of the bottle that it was normal for it to happen.

Geophysicist said:

Sorry, That was what my GI told me. Not trying to misinform anyone, just trying to share info. I know I want as much info as I can get!

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Crohn's in the colon is called Crohn's Colitis. I have it.

Hi Emkat
Ive been on Asacol now for nearly two years . It certainly reduces the frequency of BM and they are more solid. I also find if back of taking the drug for a period of time that I start to bleed again. I have tried foolishly several times thinking i was ok but soon got reminded. So Im staying with it . I still get flare ups but they tend to be more manageable.
Sides effects are few . Mine are painfull ankles and wrists and sometimes headaches but
not sure if its just IBD progression or the drug.
Hope this helps and that you are getting some relief .

Peter