Crohn's and Imodium
Posted 24 January 2004 - 10:28 PM
Posted 25 January 2004 - 10:42 PM
Posted 26 January 2004 - 01:26 PM
Posted 26 January 2004 - 03:44 PM
Hopefully, if it is Crohn's it will be a mild case like your's. The first GI did say it was mild Crohn's colitis. Is there any truth to people saying that mild cases generally stay mild?
Posted 25 January 2004 - 10:46 PM
Posted 25 January 2004 - 05:34 PM
It helped me a lot but my max dosage per day was 8 capsules
Posted 26 January 2004 - 06:23 PM
My Crohn's has been mild all along, but my GI # 5 did tell me it may not stay mild and could flare.
That's why I take no risks - and, although, in remission, I still only eat the foods and drinks I know I can and don't risk the others. I'm not giving it any ammunition to flare, and it's working so far.
We were invited to dinner recently, while on vacation, and I was asked to send a list of foods and drinks I could not tolerate before we went. I sent it. The hostess decided we'd go out to eat Japanese! I guess it seemed like a lot. But it wasn't really. I can still eat so many good things, so many. Anyway, she called me after the Japanese dinner, concerned, because I ate very well, small portions though, and asked if I was all right. I was.
It is my understand that, so far, there is no cure for Crohn's.
Just get a diagnosis, and go out and celebrate.
I know that sounds funny to others but I know you
will know what I'm saying, as will anyone who has gone years without a solid diagnosis.
Let us know what happens.
Posted 26 January 2004 - 12:32 AM
Posted 25 January 2004 - 09:50 AM
I wouldn't recommend taking it daily, partly because it could mask more serious flare-ups and also, it makes it harder to tell whether or not your medication is working. it can also cause rebound constipation, which is not so good! I tend to use it when i have something i need to get through and need that extra bit of confidence.
Posted 26 January 2004 - 01:07 PM
You might also want to consider - if you haven' already - going on an elimination diet - taking out the trigger foods which are probably making the d. worse.
Altough in remission for over 4 years, I still take few if any risks - and I don't eat my trigger foods, or drink my trigger drinks.
I found out what they are - as those who know me know, so tune out here - by writing everything single thing down what went in my mouth for 10 days, and writing at the bottom of each day how my stomach behaved, or didn't. After 10 days, I put all my foods in a Yes, a No, and a Maybe list.
Then fine-tuned that for about 6 months, and kept on fine-tuning it for over a year. One gets to know what causes d. (my biggest problem) and heartburn (which came after, big-time) and I also got rid of the gas, the bloating, the general discomfort and, eventually, the gurgling - as long as I don't lay down for an hour or so after eating, esp. dinner.
I also take 2 digestive enzymes immediately before my main meal (used to take two after lunch, too, and one after each meal) - and I take a probiotic.
Plus Calcium (with magnesium, Vit d, other minerals) and a multi-vit, also Vit K (for calcium to get to bones - people with Crohn's can develop
osteoporosis so the calcium and Vit D and magnesium, etc. are v. important, whatever your age, because your bones can be depleted with some of the meds you may be taking - and 20 and under is when they need all the help they can get, as well as later.)
Posted 25 January 2004 - 03:17 PM
Whatever the GI's say, I think it messes up your whole body. Even one a day.
I take it once in a blue moon, and carry one around with me, in case, because I feel better if it is there, esp. when traveling. But I've neve had to use it, thank goodness.
My Primary Care doctor dislikes Immodium. Wouldn't even let me have it once when I had food poisoning. Wanted me to take Peptobismal instead. But that was less affective and I didn't listen to her after 2 days too long suffering.
I really think you might want to go to a third GI. But make sure you have all the test results with you from procedures and blood tests.
It's offputting not having a solid diagnosis, I know. And you must put that to rest, if only for peace of mind, but also, of course, to help get you better, and off that Immodium.
Just because a capsule endo is next on the list, doesn't mean that another GI might not want to do another, more affordable test. And, when did you have your last colonoscopy?
Posted 26 January 2004 - 03:23 PM
Wise words for you, too, at this time.
Seems to me you are, like I was, in denial. And the Immodium is being used like a band aid. How about trying a strict elimination diet again while you pursue a solid diagnosis.
I have a high sed rate too. Goes up and down (was 110 at one time, now about 98, and only goes down to about 47, sometimes. I'm probably older than you, and 47 would be fine for my age, but a high sed rate is a sign of an inflammation, so along with the blood and fevers, it may be Crohn's. And a solid diagnosis isn' going to change your denial process, but may help you focus more on the right way to get and feel better.
Believe me, I went out for a champagne celebration
when I finally got my solid Crohn's diagnosis, after 4 years of GI's saying I had this and that but only No. 1 saying it was "suspected Crohn's"
and he was so inexperiened he didn't have the right tube to go far up enough to find my Crohn's when he did his colonoscopy. It was only from the radiologist who did the Upper/Lower GI series that I got a "suspected Crohn's diagnosis 2 weeks or so later. It took GI # 5 (!) to say that radiologist was not just good but supberb (his words) and he'd trust what she said. Then, he gave me a colonoscopy, looking, I must admit (!) for the
inflammation, and I heard him say "there it is,
Crohn's" which was confirmed by the pathology
report, along with a polyp.
Go for it. You'll feel so much better, the relief will be enormous, and if it is something else, you will be one step ahead.