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I'm very sorry to hear that Entocort does not seem to be effective for you, any more. I had never questioned the long-term efficacy of budesonide, but after reading your post, I found the following research article, with a somewhat surprising conclusion:
CONCLUSION: Budesonide is significantly more effective than placebo or 5-ASA for inducing remission of active Crohn's disease. Although budesonide is 13% less effective for the induction of remission in active Crohn's disease than conventional corticosteroids, it is less likely to cause corticosteroid-related adverse effects. Budesonide is ineffective in maintaining remission.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Ant, congratulations; what a great milestone. You have worked hard and diligent to get where you are now. As Barbara said "hug that word remission"!
Gloria, I have used Imodium with Entocort when things are starting to fall apart and it works well. I also don't feel that great but it works. I usually take one in the morning and I am good for two days. It gives me peace of mind. I am sorry to hear that you are back on 3 and with no real results. I too have had to up mine to two a day and am eating nothing; rice & meats. I have had the same thoughts as your DH. I probably could control the D if I took 3-4 a day of the Imodium, BUT I, like you, want to handle this by diet alone. We just have to keep trying my freind.
Gloria wrote:
I have a question about using Imodium. I've always been reluctant to use it, and have only taken it as a last resort, usually when I'm going to be at an event when I can't easily dash to a bathroom. For some reason, it bothers me more to take Imodium than Entocort. Imodium works very well for me, but I've read that sometimes it takes a larger dose after continued usage. Just one pill will usually relieve my symptoms for a couple of days (while I'm on Entocort). It makes me feel a little "bound up" and I guess that's what bothers me. In three years of MC, I have only used half of a container of Imodium.
Those who use Imodium or other similar drugs have implied that they halt the progression of symptoms. I've always thought that it just stops them temporarily and once off it, the progression will continue. Like Entocort, it doesn't cure anything, but suppresses the symptoms. Is it more likely that the usage buys time to work on changing the diet to correct the problem?
Gloria
Gloria,
I'm with you on the Immodium. It works almost too well for me by stopping the D for a day or two, but by stopping the D, I feel totally bound up, gassy, even crampy, as if my body really wants to empty but can't. When I do finally go, it starts firm and then there's a massive amount of D. So I believe Immodium simply delays the D. It does nothing to help heal, calm, etc. I don't see it as a helpful maintenance drug. Just useful in case of emergency.
It was apparent to me in March when I increased Entocort to 9 mg. from 3 mg. that it wasn't as effective. It used to begin making a difference within a couple of days. I was still waiting for an improvement in my symptoms a month later and I haven't had steady, consistent improvement all these months. I suspect I could go off of it and still have the same results. I worry that if I do, I'll be in the bathroom 10-20 times a day instead of 2-8 times a day. I could go off of it and take Imodium like most others have. It would still be managed with drugs, just a less powerful one.
Gloria
You never know what you can do until you have to do it.
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