Thank you for providing the information on immodium, Jan. I finally figured out (through trial and error) that I need to take it about 4 hours before I need it to work, but it doesn't seem to be lasting that long...I think I'll keep taking it every day to build up the level in my system and see if that helps before trying lomotil.

Jan,

A quick search indicates that I underestimated the common cost a bit- it is more like $25 and up for 500 grams, but still not pricey. Might be worth trying for some.

http://www.google.com/products?q=glutamine+500+grams&btnG=Search+Products

My daughter takes the loperamide 2mg caps, (I think it is prescription immodium) it is covered her mail order prescription plan. I pay $20.00 for a 90 day supply.

Beckysmom - do you have a Costco or Sam's Club near you? You might want to see if the cost for the loperimide is less there. I get a 2-pack of loperimide (200 2mg caps equaling 400 caps) for about $6.00. Actually, since I NEED the loperimide, I never really look at the price, but I think I recall it was around $6.00 for 400 caplets. How many were in a 90-day supply for Becky?

kathy

That's pretty good Kathy! But are they in those stupid blister packs? I hate those things.

Jan

No - they have finally stopped that stupid blister pack nightmare. Now all I have to do is poke the tamper-resistant foil covering. It's great. I was wrong - the loperamide is only $5.49 for 400 2mg caplets.

kathy

Kathy,
I love Costco...worked there for over 10 years. Thay have been great about working conditions and time off with UC. I had an oustide marketing job and when I had flares they would let me work inside near a bathroom...and they never complained when I would run to the bathroom. I got all the time off I needed for my surgies as well. One co-worker thought I was bulemic because I would eat my lunch and then throw up (my UC was so painful I would throw up half the time when I went to the toilet)
nice place to shop too.
David

Kathy is corect about the price at Costco. That's where I buy my mega-supply.

Hey Indy - My neighbor runs the Costco here in Issaquah and we are really good friends with them. Love to party .

Hey Kath - the only issue I have with the packaging is those STUPID childproof caps. Yikes, I hate to think what someone with arthritis has to do to open those damn things. You nede a saw just to open the damn top.

Cat

Cat - I just don't screw them all the way down when I close them up. Voila! Non- childproof. Of course, I have no little children bouncing around so I don't have to worry about it.

kathy

The only problem with not screwing the cap all the way down is that you allow humidity in, which can affect the potency of your drugs. The better thing to do is to just find a screw cap that fits that is not childproof and use it.

Now, I have a reason to renew my Costco card the next time membership comes up at work.

Jan

Update -

Thank you all for the feedback. I have been trying for the last week on varying the schedule of immodium intake. Jan's comment on the timeframe that immodium is effective made a lot of difference for me.

Here is what I am doing:

I take 2 immodium with my breakfast around 5AM. Then, I take 2 immodium with my dinner around 5PM. By the time I go to bed around 10PM I am making sure that I "go" even if I don't have the urge so I know I'm going into bed empty.

Results:

After about a week of this routine, I'm able to get down to just 1 wakeup per night - normally around 11PM-12AM range. That is a big improvement from before. I think the key for me was proper scheduling of my doses (Thanks again Jan). Although I would like to sleep entirely through the night, I am still very pleased with just 1 wakeup. The only drawback that I am experiencing now is that when I do wake up in the morning I really have to go. The urge is significantly stronger. I'm not sure why this is different, but it is a good tradeoff for not having to get up multiple times every night.

Rick

Jan - great info about Immodium. I had noticed some of what you said just in my own use, but now that I read your post, I'm going to start taking one with breakfast and one with dinner!

i've been taking two lomotil before each meal, then two before bed, as long as i dont eat after 7 pm, i usually sleep 8 hours through the night...good luck! (i just had my td a month ago so i hope it stays like this)

Hey Jan.......I take 2 immodium in the morning and 2 at bedtime, and still go about 10+ times/day. How do you know if you have cuffitis?? And if I take 3 immodium in the morning is that safe because I am nursing my son?? Thanks, Gina

10 times a day isn't too bad, but if this is your low and you average higher, then you probably need more Imodium. However, since you are lactating, I would not recommend increasing your dose (a small amount does cross into the milk), but would recommend taking it three times a day instead of two. I'd give your OB a jingle and run it by him. You have to find that balance between what is best for you and what is potentially a risk for the baby. It's probably fine, but you know how it is...when there is the unknown, we like to be conservative, if possible.

By the way, good for you for nursing your son!! There is some evidence that nursing may reduce the risk of IBD. I nursed both my sons, one for 9 months and the other for 11. The second son never even had a bottle and weaned straight to a cup. Something I did not have the benefit of.

Generally, cuffitis seems just like pouchitis, but there is bleeding. However, I do not have bleeding all the time when my cuffitis is active. The doc can feel the bumpy rectal cuff tissue on digital exam, so you don't even need a scope.

Jan