Diarrhea with a J-Pouch

[ChristineinDenver]

Hi All,

I am experiencing major diarrhea with my J-Pouch. Been through lots of testing ~ no infections, no pouchitis, none of the usual culprits. My takedown was in June 2012, and Ive never experienced the "new normal" of pouch life.

Does anyone use metamucil or some other fiber supplement and if so, how much and at what intervals?

Thanks!

 

[katiesue1506]

I don't have a J-pouch but I do have an illeostomy.

I'm using Imodium 3 times daily (right before I eat) to slow things down and I have 2x the recommended dose of fiber on the bottle before I eat 3 times daily.

I take the Benefiber equivalent (the ones in the green bottles) because its the closest thing to the kind they gave in the hospital. I think Metamucil is psyllium husk based which I prefer not to take because it can cause more gas and bloating than dextrin. Dextrin is made from wheat fiber but it is said to be gluten free. Here's a linky of info:http://www.livestrong.com/article/511333-psyllium-vs-wheat-dextrin/

So most bottles (of Benefiber stuffs) say to take 2 teaspoons and I take 4 teaspoons before every meal.

I've also made it a point not to drink anything while I'm eating. I can drink before or after, but if I drink with my meal it tends to super rocket everything out faster.

I've been told that people who don't have a colon can need to take crazy high doses of Imodium for the rest of their life (I heard of someone taking anywhere from 8 tabs a day to 20 a day). And that's okay as long as you don't have your colon--- normal people couldn't do that for sure

I hope this helps.

 

[ChristineinDenver]

Thanks Katie, I will try to find Benefiber. The last two times I have looked it has been Citrucel and Metamucil only and I agree; the Metamucil makes me gassy. As if I need more reasons to clench!!! :rof: I will try the dosage.

I am sure that stress contributes to all of this and I have a horrible ex husband who continues to try to bully me for money.:voodoo: I am just trying to keep it all together right now, work as much as I can (I sell real estate and only get paid when I sell), so I have had to draw the line in the sand with him. Lots of deep breathing today!!

 

[canuckscouter]

I've had a S pouch for almost 19 years now and have had a lot of experience with diarrhea.

First of all what do you mean by major diarhea? How many times a day? What about at night?

At first I used metamucil for years. I took a good spoonful with every meal and it did help to thicken my stool a lot and I guess slow things down.

Imodium does a great job of slowing things down as well but when I use Imodium I take on tab before I eat. I usually only use it when I'm driving long distances, skiing, kayaking/canoeing down a river somewhere. Be very careful to follow the directions on the ones that say to drink water with them.

The big one for me though was to identify my triggers. You can use a food journal or you can try a full on elimination diet. Dairy, fish oils, foods with coconut oil in them, fruit juice (apple and orange) are big triggers for me. Coffee and anything with lots of sugar are triggers as well. They can double my trips to bathroom easily.

Right now my normal is about 10 times a day (1 in the night for sure) but I'm aiming to get back to 6 again. I had surgery in 2009 to deal with adhesions and things changed after that.

 

[ChristineinDenver]

Thank you so much for your reply. I am so grateful for this forum as there arent a lot of folks out there that have our situation!

I was going 25+ times a day ~ and it was soft (like oatmeal) most of the time. Nights were the worst!! I did journal to identify triggers. I too seem to be set off by dairy, alcohol :-(, and anything that has a high fat content. But it seemed to be more involved than just food, and the doc told me "oatmeal" is as good as it gets, so I had an anal manometry test and it turns out that my sphincter was not that strong and it was attributed to sacral nerve damage. I birthed four large (wonderful!) babies and the docs arent sure if it was from that or from the colorectal surgery. The great news is that I was a candidate for a sacral nerve stimulator implant; which is similar to a pacemaker but for the nerves that communicate with the sphincter. My brain was saying "hold it" but the nerves weren't connected. No wonder I was having such troubles!!!

The implant has given me my life back!!! I still go about 8-10 times a day, take 12 lomotil a day and paregoric, but I can actually hold it and get to the bathroom. The constant sense of urgency is gone. I feel so blessed as this device has only been approved for fecal incontinence for a year ~ its been around for urinary incontinence for 20 years.

So long story short, I liken my surgery to fixing up an old home ..... Sometimes you take off a wall to replace something and find another problem you have to take care of as well. I am on the bandwagon though to spread the word to anyone (pouchers or not) that this is available, recovery is easy, and is a drug free way to get you back to your old self. Fecal incontinence (or incontinence in general) is just not discussed so its easy to get discouraged about treatment options.

 

[2thFairy]

I am so happy for you!!! I was just wondering the other day how you were getting along. I had no idea that you had already had the implant procedure. Excellent!

 

[ChristineinDenver]

I'm starting to see the old me (which is the happy energetic one!!) come back. It is such a blessing. I am thinking of starting a nerve stimulator thread, or fecal incontinence since it is sort of the really ugly stepsister of crohns and colitis that nobody wants to talk about and there are so many out there that suffer from it. I've read stats that its 10-20%. thats a lot!!

 

[canuckscouter]

I could add to fecal incontinence thread. Lol

I plan to respond to your questions but need a little more time than I had last might. I was at a concert last night that I really enjoyed.

 

[canuckscouter]

I am glad to hear you are starting to see the old you, that is a really good sign. I still remember getting there myself and it was a really good feeling. 25 on a daily basis would be hard to take. I am normally at 10, including 1-2 at night, and wish for less sometimes. I've never heard of the implant but glad to hear it is working for you.

If I can offer one piece of advice it would be to watch your vitamin a mineral levels. Mine slowly went down over a period of years and led to other health problems (depression, frequent colds etc). I'm dealing with it now with vitamin supplements and am going to start juicing (found out about juicing on this site). I've come a long way back but not all the way yet. I would hate to see others like yourself slide down that path too.

 

[ChristineinDenver]

I too have started juicing and supplementation. My vitamin D levels were super low and I think the juicing is great because I can get the nutrients without the fiber.

I too love music, and my last concert (Bruce Springsteen) had me in the bathroom 3 times, no fun. Looking forward to being able to go a whole show!

 

[canuckscouter]

I was fortunate and had a good night. Only went right before show (preemptive strike) and intermission.. I can wait to start juicing and getting back to normal again. This past week I have been having a lot of trouble with my pouch, I think pouchitis, which I have never had before. So chicken soup, both, store bought juice but only found fruit juice so far... I will get through this. Posted on my phone so please ignore anything silly.

 

[Heb]

I have had a total collectomy after many years with Ulcerative Colitis and was having constant diarrohea as well, I am on eight Gastrostop (loperamide) tablets a day and was still having trouble until I suggested to the doctor that I go back on to Salazopyrin which I now have three a day of and all seems to be going well. I have an internal pouch, not a J pouch and had an ileostomy for a while after the initial op. If that's any help, hope it is, I eat what I want and have a drink when I want too.
I also had pouchitis which was when I suggested the return to Salazopyrin.

 

[mf15]

For anyone else,my son has had a pouch since 2000,he swears by the Paleo diet,and
some 15 strain probiotic. He also had all his mercury fillings removed.
Old Mike