What's the next step, getting a colostomy? 

Can't figure out what's going on or why it's happening all of a sudden. I've had nighttime incontinence for a while now, and have dealt with it, but now, it's happening during the day. I woke up this morning and could feel it seeping out. It was all over my nightgown, toilet, my back, everywhere. Ready to cry...it's so degrading. I'm scheduled to go away in March, but I'm beginning to have second thoughts. My surgery was in 2001, so it's not a new pouch and I'm not a young person either. Does this mean that it's time to start considering having a colostomy, something I've dreaded for many years. I'm ready to give up.

 

Original Post

I'm not taking magnesium, what would that be for? I take 2 fiber pills per day and it seems as though it's doing it's job. Lomotil isn't working for me so I'm not sure that Imodium would help. It happened twice during the day yesterday so it's not only at night. Now, I'm almost afraid to go out.

Do not take the magnesium.  I was just asking. The fiber pills could be giving you loose stool. For me it would. Try the meta mucil 4 times a day with the Imodium. It will help.  Try it ASAP and let me know by the end of the week. Get the orange flavored. Two teaspoons per serving. Your doctor could try Rifaxin pills. That will work 100 percent. 1 or 2 pills a day and you could stay on it

The fiber pills have been very helpful in firming up my stool. The doctor gave me free samples of the Rifaxin a long time ago and it never helped. Nothing seems to work on me....but the fiber pills do work. I'll try the immodium and see what happens. I'm using a new inhaler for another problem, and wondering if it's a side effect. Thanks for your suggestions.

 

I know, I just checked it....I don't know if I can drink it, the thought of it makes me gag. I eat lots of starch. Going to the doctor today for another problem, I'm going to see what she says, although I'm pretty sure that she doesn't know too much about pouches.

This sounds like pouchitis to me. Has that been considered/ruled out? Sometimes a number of antibiotics have to be tried - the only one that worked for me was Cipro.

The soluble fiber might also help. I find the orange Metamucil quite tolerable, but some people do fine with Benefiber, which is pretty much tasteless when mixed into another beverage.

I'm not sure that I can take Metamucil. I was taking the wafers and got horrible gas.....I have too many issues, and don't think I can deal with gas on top of it. Is there anything else that I can take without the ingredients that Metamucil has?

 

Hi everyone. How is everyone doing today?  Well, I'm new to this forum.  I was thinking of adding tofu to my diet.  Has anyone been eating tofu?  And what do you think of it?  I need to add protein to my diet since I've been told I can't have legumes of any kind.  This does not make me happy.  I like beans and I know they do the body good. But in my case, with the J-Pouch, the J-Pouch rules.  

There are fiber gummies that Jan told us about.  Phillips is the brand.  

If you do need to have it removed you would have a permanent ileostomy vs a colostomy.  You might want to read some posts in the Ostomy section here.  There has been quite a few of us that had j-pouch failures and had our j-pouches removed or had them disconnected.  If you have any questions asking there might bring you question to the attention to more of us.

The nurses told me to take imodium - generic is really cheap - as an appetizer and fiber, metamucil in my case, as dessert. The timing of when you take them really does matter.  You can take up to 8 imodium daily so if what you are doing isn't working you might want to try taking them 3-4 times a day.  

I hope things improve for you but if you do need to go to an ileo please know that it has helped many of us and we are feeling much better now.

Hi everyone......I'm new to this forum......I'm no longer able to use VSL#3 ds as my probiotic because I can't afford to buy it and the company that has been supplying it has closed it's doors.  Can anyone give me the name of an affordable probiotic or the name of a company that can help with obtaining the product?

 

 

Edith, I use Align and most times I get it at Costco or if I can get a good deal, at CVS. At Costco, it's about 55.00 for 12 week supply.  It's much cheaper than VSL #3 DS.  Another thing you might want to do is check the VSL website to see if you qualify to get it free or at a reduced price.  It's based on income.  So far, the Align has worked for me.

Cipro is in the same antibiotic class as leviquin, so if it was not helpful, Cipro probably would not help either. Rifaximin was not as effective for pouchitis for me as Flagyl or Cipro. If you have not tried Imodium, it is worth a try. It is known to improve muscle tone of the rectal sphincters, along with slowing the gut. You may need up to 16mg/day (8 doses). 

Benefiber and Metamucil have different fiber sources. Metamucil is psyllium and Benefiber contains wheat dextrin. If you are gluten sensitive, Benefiber is not a good choice. Citrucel is more inert, containing methylcellulose.

Jan

Thanks for responding CTB23.  VSL#3 hasn't closed its doors, it's the company that I was getting it from that closed it's doors.  I just can't afford the medication.  I will try something else, and I will look.  Thank you for responding to my inquiry.  I'm sorry MEMA 1 that you're having such a hard time.  I hope you will be able to get your problem under control.  I remember when I first got my j-pouch, I was afraid to move for fear that I would have to use the restroom.....when my rear end was soooo very sore.  I use to live on Imodium AM 24-7, so I know your pain.  But do try the Imodium because it works.  Please try to calm down and stop thinking the worse.  Stop eating at about 6:30 pm so you can get a good nights sleep and make sure to use the Imodium it will help you. That way your trips to the restroom will be very limited.  You may have to adjust the time you have your last meal of the day until you get your situation under control.

 

 

 

 

MEMA 1......You might want to take a close look at what you may be eating....sometimes when we think all is well our bodies take a left turn somewhere along the Rout and it forgot to let us know it just took a left turn.  Could it be that you may have just introduced something new into your diet?  Is that possible?   

I'm just asking.  There are times when I might introduce a new food because I was simply wanting it without thinking of what might occur if I eat this.  Which I might say is honestly on my mind 24-7.   I just made a simple dish the other day which was string beans and ground turkey, with simple seasoning, simple to me but not to my intestines.....It gave me a little problem.  I could feel the gas building and then the gas, which of course was strange to me, but yet I ate it again the next day without any issues whatsoever.  Strange right?  Well, sometimes your intestines get a little confused and do the most damn things.  And sometimes we can't win for losing

Our intestines are just so sensitive at times that they make us sick.  So go figure.  So I've just learned in order for me to live with this J-Pouch I must treat it as if it's a new baby and I treat it with careful thought.  That's what works for me.  Like I drink cinnamon tea, green tea, and with or without honey.  I'm careful with the seasonings  I use on my food as well, I only buy fresh veggies, and I never eat beef....my intestines won't tolerate it.  I'm very careful and that's what works for me.   

I would love to eat beans again.  But with that said I at times can eat black beans without any problems.  Maybe my intestines like the color black...LOL.  Ok, I just made a funny regarding MY intestines.  So, I'm just saying and or asking, have you maybe introduced a new food?  So, but anyway, how are you feeling today?  How did you sleep last night?  Any better? 

Sincerely, I do hope it's nothing serious and you're able to get this worked out.  It's bad enough we must live under the circumstances we live with.  Let alone to add another problem.  I sincerely feel for you.  We all have issues to deal with.  But there are times when we don't need another ticket added to the one we already are holding.  MEMA 1, I do hope you have a much better day.   

I have the same problem and will see my surgeon tomorrow.  But I want to mention that I stir Metamucil into about a 1/3 cup of applesauce or yogurt and it  is less distasteful to me than if in water.   What quantities and numbers of Metamucil doses work for you all, and how soon before meals do you take it?

Despite various trials to cure my incontinence, it persists. Most recently, the accidents have increased and I have nausea and  burping for several hours at a time.  If any of you have thoughts on this, I'd appreciate your sharing.  Thanks!

 

Hi

TCM....how you doing?  I don't take Metamucil or anything other than Gas-X for whenever I have gas.  And I don't have those issues and I thank God that I don't. However, like I mentioned to MEMA 1 I watch very closely everything that goes into my mouth.  That's important to me.  I believe that's what's been helping me.  I don't eat bread but I make a soft taco from sweet potatoes and flour.  I'm sorry that you likewise having difficulty.  Whenever I know I have to go out for whatever reason, I usually don't eat before leaving the house and I will take 3 Imodium tablets just to be on the safe side.  Normally, I don't eat out either.  That's what works for me.  

I would start off taken it easy with whatever your eating to start to process whatever could be the cause.  I would eat boiled eggs, oatmeal, or a hot cereal for breakfast, eat an easy lunch like a sweet potato or white potato with chicken and a veggie lightly seasoned and maybe try eating some applesauce.  And of course water.  I would take it easy for at least a few days to see how everything works out.  Use the process of elimination for a while just to see if there are any changes. 

Again, I'm sorry your having issues as well as MEMA 1.  Take care my dear and have a fantastic day.  

Jan Dollar posted:

Cipro is in the same antibiotic class as leviquin, so if it was not helpful, Cipro probably would not help either. Rifaximin was not as effective for pouchitis for me as Flagyl or Cipro. If you have not tried Imodium, it is worth a try. It is known to improve muscle tone of the rectal sphincters, along with slowing the gut. You may need up to 16mg/day (8 doses). 

Benefiber and Metamucil have different fiber sources. Metamucil is psyllium and Benefiber contains wheat dextrin. If you are gluten sensitive, Benefiber is not a good choice. Citrucel is more inert, containing methylcellulose.

Jan

I've been using fiber pills for at least two months and have noticed a change for the better, do you think that I still should start using citrucel? Also do I take the Imodicum everyday darned spell check! My pc is down and don't do well on My tablet. 

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.

Edith posted:

Hi everyone......I'm new to this forum......I'm no longer able to use VSL#3 ds as my probiotic because I can't afford to buy it and the company that has been supplying it has closed it's doors.  Can anyone give me the name of an affordable probiotic or the name of a company that can help with obtaining the product?

 

 

I buy my vsl online at https://shop.vsl3.com/vsl3-c2.aspx, with a $5 off coupon when using the promo code "DOCTOR". But, if that isn't affordable, then I have also used Inner-eco liquid probiotic. I buy it from whole foods or natural grocers stores for about $25 per bottle for 30 servings.

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