Time for MRT updates!

[Linda in BC]

Because I have such a terrible history with any kind of medication, I'm considering entocort only as a very last resort, so as much as I have been tempted to try it, I'm still holding out.

( Ok so I don't have this quote thing down quite right yet..... ) yes I do.. now. Thanks Tex!

Kari, I am very glad to hear you are finally pulling out of this flare. I thought of something as I read your post and the part above. I am extremely sensitive to any drugs as well. So here's a different way to look at how that might work in your favour with Entocort...you just might only need to take a small amount of it, for a short time. That is what happened to me. When I started entocort at 9 mg /day ( 3 mg x 3) within two days I was totally constipated ( now this is after 13 years of pretty much non-stop D!) the constipation was so bad I was wishing for the D. again! So after checking on here, I immediately cut down to two pills a day, and then within a short while, a week I think it was, down to one a day. I continued on 1 a day for no more than two months, then 1 every second for a couple of weeks, then one every third, and have been on one every 4 days for the last four weeks.

I may even have tapered slower than I needed to, but I was so afraid to not give my gut time enough to heal. I am due to take one tomorrow but I am pretty sure I am just going to stop now and see what happens. I have been totally fine all this time with normal bms unless I screw up and eat a no-no, but even then it is just for the one bm then next day normal again. oh, I forgot to say for the tapering I am also using a very small (1.5 mg) dose of ldn nightly. Not sure if it is making any differnce but I think it is.

Anyway, I am thinking you may have the same experience as me if you try the entocort.

Also, you mentioned that you had MC untreated by diet for ten years. Well me too.. for thirteen years, so we are not unsimilar. Being extremely sensitive to drugs I find has its advantages as long as I take doses that are appropriate for me. I almost always need only half of what other people need of any drug. Just something to think about, as an ace up your sleeve if you can't seem to make headway with diet alone. I had tried with diet for 4 months and was just not making any headway. The entocort changed my life in a matter of two days.. after 13 years!!!!.

Luv
Linda

[Kari]

Linda,

Thank you for your encouraging post. It has been 7 "endless" months since I started working on the diet by eliminating gluten - entocort is looking better and better :).

Love,
Kari

[ant]

Dear Gloria

Many thanks for your advice. I think you are right. 2 weeks of real normans before a further enotocort taper. I hope your get to the next level permanently. Then I can try and follow in your coattails.

Best wishes, ant

[tex]

Linda,

You were very close. If you will edit your post again, you can see that I removed an extra "[Quote]" at the beginning, and a pair of extra "[Quote]" and "[Unquote]" functions at the end, to make it work correctly.

Tex

[Pat]

Kari,

I also have had MC for a long time...over 11 years. I guess I am one of the more sensitive ones to foods etc. Unfortunately Entocort nor any other meds have helped me. I have tried Entocort at least 4 times over the past 4 years. The first 7 I was told I had IBS. I guess Entocort worked a little..about like taking a little Imodium. I finally decided that Imodium was safter than Entocort. If Entocort had worked for me I probably would have kept taking it. Maybe it will work for you. There probably isn't any harm in trying it for a short while. I think it is the long term use that doctors are leary of.

Pat

[Gloria]

Polly,

I just noticed your second post to me.

I've been very slow to try new foods because I don't want to "rock the boat." I'm doing very well, having just one Norman every day.

I'm trying to convince myself that this time is different and instead of looking for more foods to eliminate, I can start testing foods to add. I'm going to push myself to test more foods. I ate strawberries in my cereal this morning after heating them in the microwave first. So far, I'm good. We'll see what tomorrow's BM brings. I haven't eaten strawberries in almost 18 months.

I would love to resume eating nut butters. They're great for a quick snack; they're filling and nutritious. Plus, I can use the calories. I think the problem has been the fiber. After reading your's and Mary Beth's similar reactions to fiber, I'm considering trying them again. But don't you think it's better to avoid irritating the gut, or do you think there's a time when we are healed enough to handle it? If so, then how do you know when that time has arrived?

Congratulations on being able to eat eggs again. I don't think eggs are in my future, but do let me know when you can resume eating chocolate!

Gloria

[Kari]

Pat,

That's very interesting about imodium and reassuring to hear, as I have discovered that it seems to work for me now. I tried pepto, which I had used successfully in the past, but my flare got worse instead of better. Then I tried imodium, which I had problems with before, and lo and behold, it worked. I'm very happy with this development and keeping my fingers crossed that I will not have to resort to entocort!!! However, with this fickle MC, we seem to always be on shifting ground, so who knows what the future holds?

Love,
Kari

P.S. that the strawberries settle well for you Gloria - they are soooo delicious.

[Kari]

Linda - thought I'd let you know that I'm thrilled for you that you're doing so well - way to go!!! You're a great inspiration .......

Love,
Kari

[Gloria]

I am due to take one tomorrow but I am pretty sure I am just going to stop now and see what happens.

I hope everything stays the same and Norman continues to visit!

Kari,
Yes, the strawberries, even mushy, were delicious! It feels like we are all in this together, doesn't it? It's so great having a support group that understands our worries, successes, and setbacks.

Gloria