Alternatives to Imodium for Clustering?

[Badass]

I am using psyllium husks to slow things down since my reversal but still find there are bouts of clustering for which I need imodium. Problem is imodium makes me very sleepy and spacey. I wondered if anyone knows of any other options for cluster control. I have read that calcium carbonate can be helpful but I have also read on this forum that it throws folk right into constipation. Any experience?

Thanks!


Jane

[tammylayne]

I don't have an answer for you Jane, but I can't wait to hear what others might say. I am 9 months out from reversal, and still have issues with clustering myself, sometimes 6 - 8 times over an hour or two, and this happens 3 - 5 days a week. It is usually between 6 and midnight, which I can deal with, but when it happens at work,,,,not such a good thing. I did try fiber, but found that it gave me such horrible gas that I stopped. That was at week 4/5...maybe things would be different now. My problem isn't that I hardly go,,,I quite often will have 4 or 5 normal BMs, not little ones. I often wonder how I can go as much as I do...like my 3 feet of colon is notw able to hold 6 feet of stool lol!!

Hope some people come forwardd with some good suggestions...

[Jachut]

I have this problem - but with constipation/obstruction too. I wait till I feel the urge, pass what I can ten give myself a water enema with a bulb syringe (500ml). Wait five minutes, then more often than not a very large amount follows easily.

Then I'm driven mad by repeated urges (which I knw are false so ignore) and a pain in my left side for a couple of hours but it beats trying to push sticky toothpaste stool out my rear 40 times in four hours and suffering stinky gas.

I don't need a big empty the whole colon hang a bag type enema, just enough to empty my pouch. I can do it easily at home and thankfully in general my bowel only wants to be emptied at home in the evening (I always was regular). If I get the urge to go at work I can have a pretty miserable day.

[SammyJ]

Me too .... . Seems to be a day or two of constipation followed by clustering for hours, also usually at night. Last night was 1am til 3.30am, tonight I have gone maybe 15 times between 6 pm and 8 pm. My poor butt is soooooooooooo sore, despite liberal application f calmoseptine.

Am still wondering whether I should be taking psyllium or if that is making the constipation worse? Would hate to think what this would e like without a pro biotic!

[Cj51]

I am a little more than a year out from reversal. Sometimes it feels like once I start going, my body forgets how to stop, and it takes drugs to shut it down. You might try asking your doctor for a Lomotil. It works pretty quickly and lasts longer than Imodium. I can also start out with Imodium, and if it's not doing the job, I can still take a Lomotil. Apparently it works differently than the Imodium.

Cj

[nicola smith]

Lomotil? It's an alternative suggested in the MD Anderson program.

high fibre/low residue foods that absorb fluid (the low residue part is important). This link gives some suggestions
[url]
http://www.livestrong.com/article/25559 ... ual-foods/[/url]

[Badass]

Thanks for the suggestions, all. I have been eating high fiber (esp. soluble) and low residue. I am willing to try lomotil. I am concerned about the side effects of lomotil that I have read about which seem to include drowsiness too, and also depression and numbness in hands and feet. With my oxaliplatin-induced neuropathy, I am hesitant. But perhaps it is worth trying. Also, re: low residue- I cannot keep eating like this!

Jane

P.S. Apple pectin anyone??

[weisssoccermom]

I can't directly speak to the issues you are having but, when I had my gallbladder surgery the diarrhea issues afterwards were horrible. The docs never mentioned anything that colon problems were not uncommon until I finally said something. They gave me something called Questran. I've told a few people on the board about it and their docs have Rx'd it - from what they've said, it has made the world of difference, particularly when things like Immodium have failed.

I haven't taken it in awhile so things may have changed somewhat (doubtful as it's an older drug). It comes in a powder form and was originally intended as a high cholesterol drug. You mix it with a liquid (be careful - when you try and mix it with something like 7-up - big explosion mess!) and take it between 1-4 times a day. Be careful though as the 'standard' dosage is for patients with cholesterol problems and too much can really constipate a person - although where I was, constipation was better than the other problems.

I'm not saying it will fix all the problems but, it works in an entirely different way and when drugs like Immodium fail, it is certainly worth a try. I believe (but not sure) that it's generic as well - so relatively cheap. It's one of those type of drugs that isn't a 'one size fits all'. I originally started on a twice a day protocol but eventually ended up on once a day. I know of someone who took it three times a day, in smaller doses and did well on that. It's very individualistic and it's something to ask your doc about. Honestly, because it's an older drug and it's main purpose is NOT for diarrhea (but if you google it you'll find that docs use it for that problem as well) I don't think it's high on the doc's radar (especially the onc's) so you might want to ask about it. It is used for GI issues in the Chron's patient.

http://en.wikipedia.org/wiki/Cholestyramine

Jaynee

[Badass]

Thanks, Jaynee! I will look into that. I don't have diarrhea exactly in that stools are well-formed. The issue is the clustering and the imodium seems to work well to quiet the intestinal motions that keep me producing. I wonder if Questran will have the same effect. Will definitely check it out!

Jane

[Badass]

Double post

[weisssoccermom]

Just an FYI - Questran is very effective in slowing things down but again, be careful not to take TOO much or you can get constipated. What's nice is that it is a powder form so you can tweak the dosage so it isn't a pill that's a 'one size fits all'.

[Badass]

Thank you! I have an appointment with the NP today and will ask about this. When you take a dose, does it have an effect within a certain amount of time or is it a cumulative thing that you have to take regularly?

Jane

[weisssoccermom]

As I remember, it usually works pretty darn quickly - within the day or so. Again, remember that the dose may have to be 'tweaked'. My advice - start out slowly. Unless something has changed, you can usually get the Rx in a can (similar to a baby formula can) or in packets. If you have a choice - go for the can. That way you can take a little in the scoop at a time as opposed to the packet where you can't see as well how much you're using.
Just remember: too much and especially with too little overall liquids = consipation.
(Hint: works pretty well with OJ - no grittiness)
Jaynee

[Phuong]

Ativan has also worked for me. I normally use Immodium or Lomotil, but sometimes the issue is that with all the straining from the clustering, my muscles seem to forget how to "turn off" and just relax. The Ativan really helps me to relax the muscles from feeling like spasms. Also in such a low dose, I don't get hit with drowsiness.

[TimT]

Hi there Jane,
My bowel management nurse suggested this strategy and it seems to work fairly well for me. The idea is to try and train your bowels to empty all at once on a regular basis. She suggested the following in the morning. I start out with prune juice (mild natural laxative), followed by hot coffee (hot tea works), then a good size breakfast. All within about a 1/2 hour. This gets things moving for me and usually clears me out for the day after a few visits to the pot. It took several months for me to make the adjustment and to get my colon to behave. I still have moments though. For the first month after the reversal I was on the toilet about 40 times a day. Now I'm down to the morning session only with about 2 sittings. Things do get out of hand though when I over-consume, eat fried/saucy foods, and drink to much booze. I did find benefit in using immodium/lomotil in the first few months after the reversal, then found that they were only confusing the normal bowel rhythms.
Also try the "boula" method which is basically creating a large slow-moving poopy clot in your colon. You do this by not having liquids with your meals. You can find details to this method online. (look on the MDACC website) It worked well for me for about 5 months then I found it unnecessary as I had gained some control and regularity.
Things will improve and this can be managed!!