is this a sphincter problem or could it still be cdiff?

Hi Oonja,
I am sorry that this is still going on and that they have yet to find the cause. Why do you think that the watery bowel are related to the sphincter? The sphincter only controls how things go out not the condition that they are in...you don't say if you are having control problems, accidents or leakage.
If you cannot hold things in then yes, it could be the sphincter but it could also be other things like cuffitis (although you say that the things looked pretty good in there so that is probably not it)...I don't know much about c-diff (thankfully) so I cannot say if it hides or is very 'out there' for test...TE knows loads about it....
If the leakage is a real problem and your quality of life is impared or you have a damaged sphincter then a k pouch or BCIR are honestly good alternatives but not if it is an other problem...they are huge surgeries, even if you already have a j pouch...and not to be gone into lightly.
I hope for your sake that it is "only" C-diff or something other that is fixable.
Have you tried any sort of diet? Low sugar/carb? High protien?
Some pouchers have success when removing sugars and flour/gluten from their diets...it can make a huge difference.
Good luck and I hope that they find the answer

The c-diff diagnostic tests are considered extremely sensitive and specific. They do produce false-positive results but have a very low incidence of false-negative results.

If you had two negative results, it is unlikely that c-diff is the cause of the watery stool. C-diff also causes inflammation that should be visible during endoscopy.

Just my non-medical thoughts.....

Dan

Thanks for the replies. I guess my reasoning about the sphincters is that if my pouch is ok, then the problem must lie elsewhere? But I'm guessing a lot here I know! I do have some control problems and some leakage... I guess I was attributing the wateriness to the lack of time for the pouch to absorb the water. I really have no idea anymore! I have tried some dietary changes, but have not gone strict GAPS or SCD, though maybe it's something I should try again. Just feeling very adrift and it feels like my doctors are out of ideas as well. So at this point I welcome all feedback!

Just to clear up the point about testing for C diff. There are different tests available. The toxin test (commonly performed) is fast and inexpensive, but can miss cases (in some reports up to 30% of cases). Repeating it seems to be worthless. The PCR test is more expensive and time consuming, but is less likely to miss the infection. If you've been on antibiotics within a week or two before the test the sensitivity will be lower, perhaps much lower.

Oonja, we all differ in what signals mean that it's "time to go." Do you have urgency, or could you hold it in longer? For example, If I'm watching a good movie I'll sometime put up with real discomfort to delay going to bathroom.

make sure your not eating anything sugarless because it's all sweetned with sorbital or any thing that says tol. You have to really know what you can eat. Grapes are in season here in ca and I don't have any pouch troubles but they made me go alot so I threw them out.
There is alot of learning of foods to eat but work on checking what your eating.

Oonja, you haven't mentioned what meds your on but Lomotil or Immodium AD, some kind of psyllium husk like Metamucil or other coupled with very bland and binding diet with white bread, peanut butter, applesauce, rice, pasta may help. When my output is looser, I remove all fruits and veggies except bananas and applesauce. I know the starches are kind of opposite the SIBO diet, but if your pouch is looking good then maybe you can handle starches, just to get things firmed up. Good luck- I hope you get a handle on it soon!

Watery stools are a function of not having the colon anymore. Problems with leakage MAY be due to a sphincter issue, since it is much more difficult for the sphincter to hold-in watery stool vs. solids. If c diff and pouchitis have been ruled out, the next thing I would attempt would be to find a way to functionally make things work as best as possible.

Are you taking any meds to thicken your stool? I take 8 Metamucil capsules, 2 immodium, and a 30mg codeine sulfate about 3x/day, just prior to each meal. I DO have sphincter issues, and find this really helps thicken my stools.

This gives you something to try, if you haven't already-I would start with a lower dose and then work your way up until you find results or run into constipation problems

Another possibility may be that you do have sphincter difficulties-is your issue with urgency per say, or leakage and difficulty holding a full pouch in? (this can be hard to differentiate. I don't have urgency in that my ouch wants to empty so much as my sphincters cant hold it in anymore and once I start to lose control, I've got to go NOW.). Anyway, there are a variety of tests that can be done to measure the effectiveness of your sphincter muscles. A doctor can do a quick finger test to assess if this is something that should be further pursued with ultrasound, manometry, etc.

Have you been tested for any other bacteria or parasite infections?

I just ended up with C.diff last week but I asked to be tested for everything. I'm on Vanco for 10 days, as of today things are starting to become more "solid".

Thanks everyone for all your feedback! Scott- I kinda always feels like I have to go, though I have gotten a little better at telling when the real emergency is there. Usually while, and immediately after eating.
Ljz and JJA- Lomotil helps some if I don't take it consistently so I usually save it for traveling and appointments and things. I used to take Metamucil but lately it seems to make me bleed a bit? I just got some Citrucel capsules to try though.
ks- I had c.diff a few months ago and it seems like I haven't been able to get back to normal since. But I've since tested negative a couple of times. My doc has had me do 3 rounds of Vanco just in case and it seems to help but the effects of it kind of taper off after about a week.
It definitely sounds like I could do more on the diet side of things. My GI called today and said the biopsies still show pouchitis even though the scope initially looked good. He wants me to see the CRS or try Cimzia. I think I'm going to explore both options and try to figure out how to improve my diet. No doubt it needs improving, but admittedly it will be the hardest thing to change!
Thanks everyone for so much great feedback. This site has been a great resource over the last year!

This could just be pouchitis, for which you've not yet found the right meds. There are certainly more to try, including some combinations (e.g. Flagyl + Cipro). If you go too frequently the stool will tend to be mare watery. I don't get why/how Metamucil made you bleed, though.

What about a probiotic, like VSL?