Daffodilly, I think the VSL helps me. Maybe I just need a saltier ocean.

Ha! Yes I remembered wrong as I think it was Mike who was tossing VSL into the great blue sea.  I am open to trying VSL again and will try your approach of divvying it up and putting some in yogurt.  I live in a Great Lake state so maybe I have a chance it will work!

 

Mike, it sounds like you are going through a very rough patch.  I hope a good resolution comes your way soon.  

To clarify:  a Japanese GI doctor relayed that analogy to me.   I am not taking a stance one way or another.  

In my experience, I have had limited to no success with vsl.  
However. When I had colitis I was also resistant (nothing worked) to all meds with the exception of prednisone.   Taking prednisone for so many years caused osteopenia; that's when I had no choice but to get the J-Pouch.

Hi,

Here is the latest from Japan:

The GI Doc is referring me to two colo-rectal surgeons who deal with us Pouchies

.

Interesting, though, he has prescribed three anti-diarrhea meds.  I've researched them and they are interesting in the literature (more homeopathic than what we have in the West).  I am not getting any joy out of them as yet; but here they are:

 

1) MIYA BM good bacterium supplement tablet x3 per day

2) Albumin Tannate powder packet x3 per day

3) Polyful 500mg 2tabs x3

 

#2 is an astringent

#3 is kind of like metamucil from what I can gather

 

Research them.  Maybe it can help some of you.  They all seem relatively harmless as far as side effects.

 

Good health,

Mike

 

Thanks, Daffodilly.  I hope we all find our own relief.  I do believe each person responds differently to certain meds/diets.  Mine has always been a pretty stubborn, resistant case.  Lucky, though, that prednisone did keep the colitis in check (not lucky with all its side effects).  I suppose I'm lucky that Cipro works for the Pouchitis (though it has its nasty side effects).  Praying for the real cure  LOL

I empathize with all of us.  I've been fighting intestinal problems for 40 years now (symptoms started at 13yo).  I thought the surgery was the proverbial 'magic bullet'.  I am sure it really helps many.  We don't hear from them, I suppose :-)

 

I'll keep sharing my experiences with all of you.

 

Good Health,

Mike

LOL.  A lot of people swear by VSL, so I'm certain it helps some.  Maybe mine is more a freshwater lake.......

 

Scott, what % of people have good success with the J-Pouch surgery?  My surgeon claims 90% have 4-6 (controllable, semi-formed) bm's a day.  I'd be really pleased with that!!  I've been 10+ with no formation unless I don't chew well......

 

Peace,

Mike

Mike, I think your surgeon is quoting what the research shows, more or less. Each of us differs in what we consider a big issue vs. a bump in the road, It's also harder for folks who had excellent GI health prior to the surgery to feel as satisfied with the changes. Certainly more than 10% will have some bumps in the road, e.g. occasional pouchitis, and if that goes untreated it will be much more than a bump.

 

I hope your mysterious new meds help out.

Hi All,

As mysteriously as the horrendous symptoms came on; for the past two days they have passed!! 
I am starting to regain energy and general well being.   I only took low dose antibiotics for a few days (self-medicating as I may know more than most doctors at this point related to MY own condition!).

What an enigma my Pouch is.

Mike

Mike,

I am so glad to hear you are feeling better.  I remember hearing as I was preparing for J Pouch surgery in 2010 that having the J Pouch wouldn't cure the ulcerative colitis.  That it would simply remove the largest organ affected by it.  If that is true perhaps that explains the mysterious process of getting slammed with symptoms, then having them disappear. I know UC symptoms were like that for me.  Even now I have cuff issues and mysterious eye issues of the macula swelling...could it be my old foe....UC????  I'm curious did you take the three things the Japanese doc recommended?  

 

Here's hoping you get to walk in the sunshine for a long while with no return of troubles!