My story

hello everyone

My name is Brian. I am 29 and diagnosed with mild crohns 3 years ago.

It all started like many other stories ive read on here. Started having random stomach pains and diarrhea. Was put through a bunch of test for a variety of things all coming back negative and was told it was probably just IBS.

After a while of me still complaining. I went to a gi (my mother is actually a nurse for a gi) and had a colonoscopy. The results came back with very mild crohns in the small intestine. big intestine looked completely normal.

The doc told me he was going to start me on effexor rx and Lialda if I wanted it. He said it was so mild that I probably didn't need the Lialda. I said sure why not.

For the last 2 1/2 years I have been in almost complete remission except for occasional diarrhea in the morning. Since my mother works for the doctor I have had no reason to go see him. I would just report to my mother and she would report to him what was going on.

Well my diarrhea started to become an everyday occurrence. I was so used to it that It didnt bother me at all. It was more like just not solid stools then having diarrhea. I decided to go see him to let him know what was going on. He told me he didn't want me on the lialda any more and to see how that goes along with another colonoscopy.

As soon as i stopped the lialda my diarrhea went away, but the crazy stomach pains and sound effects returned. I was looking up lialda online and read that It should be taken with a meal. I never knew that. I was taking it right before bed like the doc ordered.

So after a week of pain I started taking the lialda with food. Pain went away and no Diarrhea. Problem solved right? no. I told my mom what was going on and she told the doc who said he doesnt want me to take lialda anymore. He says it shouldnt help me at all because my crohns disease is so mild. He wants to treat the ibs and not the crohns.

So I stopped taking the lialda again. pains came back. Now he wants me to try a different anti-depressant and take some probiotic.

I just dont understand this. if something was working so well why stop? I am going to call my mom tommrrow and have her set up an appointment. I want to ask the doc myself why can't I just go back on the Lialda instead of trying more random stuff.

well thats my story for now
thanks for reading
-brian

Hello Brian and welcome. I've never heard of lialda and have no idea what it is. Maybe your GI wants to treat you with less potent medication since your crohn's is mild. If you use a medication that is stronger than you need and the day comes that your crohn's is worse then you would need something stronger than what your taking in order for it to help. Lots of good info. here and great people too. Good luck and keep us updated.

Lialda is a brand name of a time released Mesalamine.

The GI told me that the second colonoscopy looked the same as my first. He stated that it is so mild that he doesn't see it ever having any affect on my life or getting worse.

maybe he is right and we should be treating it as ibs. From what I understand is Liadla is mild with no long term side effects so i just don't get it. if it works why not.

Thanks for the reply.

Thanks for the info. That's great that he thinks it will not get worse. When I was dx in 2007 and asked my GI if it would get worse he said yes it will. And it has. You need to ask him why he doesn't want you on Liadia. I would like to know what he says. Glad your here.

Hi and welcome to the forums. I am taking Asacol it is the same thing as Liadia, except where it is delivered. The coating on the pill makes it dissolve in different places in the bowel depending on the PH that is around the pill. This is an anti inflammatory drug based off the same chemical aspirin is made. Funny thing is though that the drug CAN cause the very symptoms you are trying to treat. They, of course, do not understand why this happens but it is not as uncommon as you might think. Then the Doctor will have to try another approach. Hang in there.

Hi Brian and :welcome:

Good to see you here. Hmmm you are in a bit of a difficult situation as far as your GI is concerned, what with your Mum working for him and all. I can understand your confusion regarding treatment and personally mild Crohns is still Crohns so why not continue with a successful treatment. I think you are right in questioning the GI personally and if you aren't happy with the response I would suggest seeking a second opinion.

This is a fab place with loads of info and support so please stick around. Good luck and welcome aboard!

All the best,
Dusty

yea well if this is mild crohns i cant even imagine what most of you on here are going through.

The gi is supposedly an IBD specialist. Has had many of journals published by the Crohns and Colitis foundation of America on IBD's. So I am sure he knows what he is talking about.

I am sure he is probably right when he says my stomach problems have nothing to do with my crohns. And I can understand wanting to treat it that way.

I just need to go see him myself and ask him. I think I would do me more good than having stuff relayed to him through someone else.

HI Brian welcome! :bigwave: I am with you on the theory of if it aint broke, dont fix it...however, if you are in he mild stages you want to keep it that way. If you have stresses in your life (who doesnt, but depends how you react to it) it is best to keep the medications in the mild stages. Sometimes switching about or trial and error helps keep the big guns away.

I would go and see the doctor and talk to him yourself, going back and forth is not a proper examination. If you have concerns I would see him asap, before you start on anything new. Being on probiotics is not a medication and is ideal for everyone to take, just makes sense. Lots of people here to help you and I see they already have! Glad you are here!:wink:

Hi Brian
and welcome

Yes I would question him too, cos Lialda (mesalasine) is a prophylactic, a preventative, as are all the 5ASAs, including Pentasa and Asacol. I have been on Pentasa for 5 years to maintain remission, and it worked, until a major flare this year. I believe if the Lialda was working well, then why stop?
If your Crohns is in the mild to moderate, ask him why he is wanting to stop something that is preventing future flare ups?
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

Welcome Brian!! I agree with you!! If it is working, why take a chance changing things!! Especially since it's such a mild drug to begin with. Unless there's some indicator in your blood work that it may be causing some harm, I'd ask to remain on the Lialda. We recently had our GI try to stop my sons Asacol and as soon as we did, the problems started. We called and the doc started it up again and now things are good. Yep, it it ain't broke, don't fix it!!