Rice, banana, toast is part of the PRAT diet and it should help you with how often you're using the restroom.  I know what I'm about to tell you may gross you out but I'm only going to mention it because way before I had my colon removed to save my life no one told me anything to help me stop from having diarrhea.  No! not even my GI doctor would help me with medication or any suggestion.  I had to fend for myself.  I was at the mercy of the internet for help.  So anyway, here goes it.....I found an article about a pregnant person who had severe diarrhea due to her illness as well and she made "CHICKEN FEET SOUP".  Yep, that's right folks and you heard it first right here....LOL.....it works.  How do I know you ask?  Because I made it for myself because I was desperate!  It works.....and thank God above, it worked for me.    So, like it or not there is something to it.  Our ancestors used to eat it for survival many moons ago.  Don't knock it until you've tried it for yourself.  And yep, I ate every bit of it.  It was rather good if I say so myself.....LOL.  I make sure now to make this part of my diet.  Of course, I have to clean them with salt, boil them for about 3 mins. then I make a big pot and let it cook for about 6 hours.....yummy, so very good and good for your health too.  Like I said, don't knock it until your desperate one day.  

The broth is excellent as well.  So what do you have to lose by trying it?  Nothing, absolutely nothing.  You have everything to gain. If our forefathers eat it, then what's the problem?  Some of us turn our nose up to the very things that may help us heal.  Anyway, it's worth a try....don't you think?  At least it would be soothing to your intestines.  

Everyone is different, but sure sounds like pouchitis - as others have suggested. Did you have the same issues while you were taking Levaquin? Or did they only start happening during the day after you were done taking it? One outlier possibility is C-Diff infection, resulting partly from the round of Levaquin. Yes, you can get C-Diff infection with a j-pouch, and yes - Levaquin can cure as well as cause this infection.

If it were me, I would be asking for a round of Flagyl - nasty tasting medicine, though it is. If you have a bacterial issue, diet will be minimally helpful at this point. Work with a good doctor who will try and eliminate things with you until you get to the root issue.

Steve

Thanks, Elmer Fudd but I don't think it's pouchitis I've been fine all day today and as far as did it happen when I was on the antibiotic, yes I always have had leakage at night but not as bad as the other day. As far as c-diff goes there's no older whatsoever so I doubt that. I have to see my GI doctor in a few weeks and I'll be talking to him about everything. Thanks everyone for all your concern and help.

No worries my dear.  How are you feeling today?  I believe it was the chocolate candy that did you in.  It has caffeine, and that is a serious deal for people like us.  Do not in the future use anything with an abundance of caffeine in it.  Not good.... .  Maybe a small piece every now and then, but never too much at one time.  Ok, have a good afternoon.  

My understanding is that Citrucel, Metamucil, etc, while not advertised,  can also treat diarrhea (and not just constipation) but the ratio of product to water, applesauce, etc is quite different.  My surgeon advises to use a small amount of the latter.  I use about 2 large soupsoons of applesauce or yogurt and a heaping scoop of Metamucil. The scoop is the one provided with the Metamucil.   When heaped, it is equivalent to about 2 real teaspoons.  I have been using it only before breakfast and use 2 Phillips gummies before dinner, as suggested by Jan Dollar.  I welcome any input as to quantities, frequency and timing, such as before or after meals.  After is not intuitive to me but I recall it being mentioned in a post some time ago.  My good wishes to all.

One more important factor for you to think about MEMA 1..... you should ONLY FOLLOW YOUR DOCTOR'S and/or SURGEON'S advice because you're his patient.  Please do not follow the instructions meant for someone else given to them for them by their doctor and/or surgeon.  Never take the advice of some else's doctor because that information was meant for his patient.  Now if I were you I would contact my GI's office and discuss the matter with your doctor before you go mixing any other ingredients together and make a small matter into a bigger problem for yourself.  You should follow your doctor's instructions for your medical needs to be safe.  It's against the law (HIPAA). 

Health Insurance Portability and Accountability
HIPAA: Acronym that stands for the Health Insurance Portability and Accountability Act, a US law designed to provide privacy standards to protect patients' medical records and other health information provided to health plans, doctors, hospitals and other healthcare providers.  
It's not wise to follow instructions of others because what works for them may not work for you.  Be safe and not sorry.  The choices are all you'res to make.....
 

TCM:  I don't argue.  And nor was I pointing fingers at anyone, and nor did I say or am I saying that misinformation is being given.  I was very clear with MEMA 1 when I wrote her.  Nor did I ever mention, not once that anyone was advising either.  If you wish to pass along information, you are free to move about the cabin as you wish.  If my providing MEMA 1 with information that would be helpful to her is troubling to you, so sorry you've taken my comment to MEMA 1 personally.  I did not address you or say anything to you about you.  Not once.   So with that said I trust you will continue to have a very pleasant day.   

If introducing anything different into what I do I try adding just one new thing at a time.  That way I can tell if it is making a difference.  We are all different. For example if I eat something that makes my output more solid I don't use the fiber gummies.  

We are here to help one another and I think it is clear that we are sharing what helps us so that maybe someone else will be helped. We are all different but similar.  I don't think any of us are telling Mema to do anything against her medical professionals directions. 

Edith, soluble fiber (like Metamucil, Citrucel, Benefiber, gummies, etc.) is very commonly recommended for J-pouches to bulk up the stool. You are correct that that application isn’t mentioned on the package labels, but it nevertheless really is quite common. My surgeon put me on Metamucil the day I left the hospital, and it has been helpful to me for about 16 years. TCM describes a common practice of reducing the fluid that the fiber is mixed with. I don’t find it necessary, and that does create a small risk of choking. I’m not at all sure why you are bringing up HIPAA - each of us is free to discuss our health situation however we like. HIPAA governs the privacy responsibilities of health care providers, but doesn’t restrict patients’ discussions.

I wouldn’t recommend combining Lomotil and Imodium; it’s likely to be better to figure out which one works better for you and use that one.

Just because a comment might follow another, it does not mean it is directed at a specific person. I believe Scott was replying to a direct question in regard to whether it is advisable to take both Imodium and lomotil, not an implication that anyone had advised it.

I also will chime in that fiber supplements are widely recommended as bulking/thickening agents for chronic watery stools, even though they are marketed for treating constipation. The point is that their mode of action serves both purposes (soaking up fluid). 

Most of us are not newbies and come here specifically to get or give ideas about what works. Often, the doctors really do not have much advice on day-to-day maintenance stuff. I don’t think anyone expects to come here for medical advice or advice to ignore their doctors.

We try to keep it chill, and friendly. 

Jan

Mema, I am so  sorry to her about your situation.  I too have been seeing similar changes, my pouch is 25 plus years old.  Dr Bo Shen just put me on entiyvio since my crohns is getting worst, RVF's and absesses in the anus area etc.  and well as some day time problems.  I just ordered 2 anal plugs from the 2 companies that make them. 1 sells only in Europe but you can buy on ebay, coloplast and the other is actually a RX, renew medical.  I would just use them when I am out in important situations or whenever its crucial there is no leakage.  Don't know how well they will work but I can let you know.  Also know that there are many others of us in your situation, you are not alone.  I know it is very frustrating. The entiyvio Dr Shen put me on on regular infusions every 2-8 weeks, it's a biologic. If that doesn't work I am back to a ileo as well.

So sorry to hear about your problems. I guess none of us are alone. I also have crohn's and I'm on Remicade. I hate it because it's making my immune system so weak. I've been fighting some kind of a lung infection that I've had for months and can't get rid of it.

Please let me know how the plugs are working. I hope that they work for you. If I can avoid getting an ileo, I'm going to try my hardest. I can't imagine what it must be like and don't want to.

Be well!

I am having the same problem with nighttime leakage. I have tried the Imodium and have major problems with cramping severely the next day. I am confused as to why Metamucil will work. I would think adding fiber would make it worse. Can someone explain?  Takedown in 2004. No problems until the past year. Any suggestions or advice?  Thanks, Becky

Soluble fiber (like Metamucil) helps many J-pouchers by thickening the stool. Stool that’s less liquid is less likely to leak, and can be easier to hold in.

The fiber develops a gel-like consistency when mixed with water. It tends to thicken watery stool to that gel-like consistency, and also thins hard stool to that same gel-like consistency.

Add Reply

Likes (1)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×