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Dr Shen emailed me back and said he suggests just starting with Immodium, and not to experiment with anything else. Apparently he does not suggest probiotics...interesting. And he does not recommend VSL#3 any longer from what I am being told. That is interesting since Shen is considered the best and most informed j-pouch doctor in the world and there were studies that showed it to be effective. I wonder if he knows something new with it and is not recommending it any longer?

The research on VSL#3 is pretty limited and from what I understand, Dr. Shen's experience in his clinic has not shown any consistent effect with it, or any other probiotic. You have to remember that most of the positive research on VSL#3 was conducted by manufacturer sponsored studies. I recently inquired about trying VSL#3 and my GI said I could try it, but he did hold out much hope for it. Granted, I am dealing with stubborn chronic pouchitis.

Dr. Shen has tried all sorts of novel approaches in his clinic that have not panned out. Win some, lose some.

http://www.uptodate.com/conten...nagement/abstract/39

I agree that you are best off sticking with one thing at first.

Jan

Last edited by Jan Dollar

My former GI Doctor was a protege of Dr. Shen who studied under him at Cleveland Clinic and spoke to him weekly, and he too shared a dim view of VSL#3 and other probiotics. He was also very dismissive of fecal implant therapy, calling it "nothing but a strong probiotic." VSL#3 was attempted in me more or less as "grudging due diligence", and it was utterly unsuccessful. It was also dangerous because when I stopped antibiotics cold to go on VSL#3, my condition would sharply worsen to the point where within 6 days I would be in a state where I was possible ER pre-admission. This was likely due to the absence of antibiotics rather than the presence of VSL#3, but I think some doctors are likely guarded about using it for this reason- that its lack of effectiveness in many or most patients exposes them to a worsening of their conditions.

Last edited by CTBarrister

My colorectal surgeon suggested Citrucel instead of Metamucil.  I like Metamucil and thought it was more effective than Citrucel is.  Metamucil tends to cause more gas.  Not for me!  Also, eating regular (not instant or quick cooking) oatmeal works for me as well.  It is a real comfort food which helps things move along "more smoothly".  Best wishes!

As I've mentioned in other posts, Metamucil gave me excess gas. I had no side effects whatsoever with Benefibre, but no benefits to report either (frequency and consistency were unchanged compared to taking no fibre supplement), so I didn't bother continuing with it. I don't take any fibre supplements now. If Dr. Shen is only recommending imodium, then I'd start with that and see how you fare. You may have to experiment with the dosage a bit - up to 8 tablets per day. 

That is interesting news about VSL#3. I hadn't actually heard that opinions on it had changed that drastically. My surgeon wrote a prescription for me several years ago and was a big advocate for it at the time, but I didn't fill it as it was cost-prohibitive and my insurance didn't cover it. I feel a bit better now that I didn't pursue it  despite the cost, as it could have been a lot of wasted money with little potential benefit. When I see my surgeon later in the year for my  scope, I will pick his brain and see if his opinions have changed.

I am taking Align now, and have been doing so for the past 2.5 years. I feel my pouch function has been better with it, but I also started turmeric supplements at around the same time, so it's hard to say which has had the more positive impact. Funny though, I had actually been thinking about going every other day with the Align to save some money.  I might still give that a try.

 

 

Last edited by Spooky

Does the Benefiber gave the same effect as Metamucil?  I’m asking because I’m dealing with lots of diahrrea (having a bad cold and I think my system is all messed up), and I want to bulk my loose stool.  Even with liquid diahrrea, can I still take Benefiber? It is just hard for me associate diahrrea with “fiber” because I believe it might cause me more diahrrea.  Please, I would like to hear any opinions and suggestions.  Thank you in advanced.

Laura

 

Have a JPouch since 2014 with lots of issues, but mainly Pouchitis episodes and an obstruction which required a big surgery to be fixed. 

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