Irritable Bowel Syndrome Message Boards | My doctor put me on Lotronex now and here is some info for those interested (m)

Heather's EFI diet was a like a miracle for me. When I found this Website and her books I was so sick with IBS-D that I could hardly get out of the house. I found almost immediate relief from my worst symptoms by following her guidelines and as time went by I got more and more stable. My food-triggered IBS was gone so long as I followed Heather's approach.

However, I never got the anxiety-triggered aspects of my IBS under control. As long as I stayed in my comfort zones, I was okay. But if I was going someplace new, my anxiety would cause an IBS flare. My doctor prescribed Ativan and I took that with a fair amount of success: Imodium and Ativan became my standard meds for trips.

Due to other health problems I'm not going to go into, however, my anxiety levels just kept getting worse. After a nightmare trip to Baltimore last summer, I went back to my GI doctor and we talked about Lotronex. He is authorized to prescribe it and thought it was well worth a try. I've been on it for almost six months now and here's what I've found.

It works for me. As far as I can tell, it simply makes it impossible for my bowel to spasm. That doesn't mean I don't still occasionally feel tummy-terrible: the Lotronex doesn't do anything about gas (which luckily is not a huge problem for me) and although it keeps my bowel from spasming it doesn't always keep my bowel from feeling like it wants to spasm.

For a while, I ran amok in terms of food, eating everything. I soon discovered, however, that the more I strayed from Heather's food guidelines the worse my tummy felt and the more Lotronex it took to make it feel under control. So now the EFI guidelines are my baseline eating plan and I add on "forbidden" items rather than my baseline eating plan being forbidden items. (Interestingly, I found that some foods I missed I no longer liked and I also found that some foods I used to eat I just couldn't face - I have yet to have a beef hamburger, for instance.)

How much Lotronex is enough seems to vary widely from person to person. I found people on the Internet who were taking 2 mg a day and I found one person who claimed to be taking .25 mg once a week and doing well. I take 0.125 mg a day but I don't take it every day. If I know I'm going to be home or in my comfort zone all day, I often won't take the Lotronex. Not only is it hideously expensive, it also has a very serious side-effect and I figure the less I take it the less I risk that side-effect. Besides that, even such a small dose is somewhat constipating for me and I like to give my body a chance to get back to normal for a day or two.

Even with the Lotronex, I do occasionally take an Imodium and once or twice I've taken an Ativan. (It's perfectly safe to do so.) I imagine I could get the same effect by taking a higher dose of Lotronex but adding a little Imodium and Ativan seems safer. This almost always happens when I don't get enough sleep: if I sleep for fewer than 6 hours my tummy goes berserk and needs all the help it can get.

I do want to try the IBS hypno program again at some point. It's possible that with much of my anxiety about my IBS relieved by knowing the Lotronex works, I'll be able to benefit from the hypno program and maybe someday I won't need Lotronex at all. For now, though, Lotronex has provided the missing piece of my IBS puzzle and I'm glad I tried it.

--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

Print Remind Me Notify Moderator