Tried to taper lomotil -- and got flare-like symptoms.

I'm on a gluten-free diet, and have been without any meds since stopping Remicade over a year ago. I was taking 6 lomotil daily to deal with IBS issues before I found some diet changes that helped with that. However, I stayed on lomotil because it helped with a chronic pain issue I have had for a few years (likely brought on by Remicade).

Anyways -- I wanted to try LDN to help with pain -- and was okay'ed to do so recently. However, I had to stop lomotil first. The pain doctor (LDN prescriber) had his nurse talk to my GI doctor, and then told me to cut down the lomotil dose in half, go two days, then stop. I ended up tapering this out over a good 9-10 days instead to be safe, but still saw significant issues come about.

Previous to this lomotil taper I was having incredibly good stools, solid, no urgency, etc... I have literally been doing excellently over the past year. However, once the taper was underway all UC issues except bleeding started to come about. Stools became looser, mucus started to show up, I got urgency, and then some pains began to be present.

So, I went back on two lomotil a day, plus 1/2 to 1 tramadol a day. The stools over the few days since I made this change have become better and better again.

I am fully aware that lomotil is not supposed to help UC; that it just slows things down. However, what I'm seeing is actual change in things like mucus, consistency, pain, etc...

I just wonder if there is any anectdotal or otherwise data to back up what I'm seeing.

If you are talking colon pains, then yes, I agree with Q. Like she said, your colon is having to go back to functioning semi-normally. I would guess it just needs time to "wake" up.

But if you're talking about the global type pains you have been experiencing, that's a whole nuther deal completely.

I am just happy you're doing so well without remicade. I hope you can keep it up. Lomotil doesn't seem like the worst thing if it keeps your symptoms at bay. Is it a pain killer of some sort? I thought it was an antidiarrheal like imodium... I wonder why no lomotil and LDN. Does lomotil help with the colon pains? If so, why change to LDN? I've never taken either so I don't know much about them.

NSSG, lomotil is essentially a strong form of immodium. I don't understand it exactly, but it has an opioid part to it (small). To be on LDN I have to be off any medicine that has anything to do with the opioid receptors, since LDN blocks them from what I understand.

The lomotil has been helping my whole-body pains. I talked to my pain doctor, he looked it up, and said it actually blocks some sodium pathway that would normally communicate pain... so that's likely why I've found it aided my pain levels some.

I want to try LDN in order to see if it can nudge my body into a longer-term health (pain-free state). The pains I have are chronic, whole body pains. They're less than they were a year ago, but still present. I've read that LDN can help chronic pain patients sometimes, and the pain doctor was okay with trying it (he uses it for his fibro patients regularly it sounds like).