The main thing I took from that is the part that said "the guality of life of the patients remained high and stable."

That was my take-away also. 15 years on any part of my body shows deterioration. Life on  Earth!

Jan

About 21 years now for my husband.  His quality of life sucked with colitis...and being on steroids...

"Quality of life remained high." That is also what I took away. I see that diet was noted as being consistent, but I wonder, however, if this study took into consideration other variables - i.e.  changes in environment or physical activity levels, other medical conditions and/or medications that might be prescribed for the same, or even simply the aging process. Perhaps it's just the degenerative process of aging, more than anything else. I mean, ask anyone over a certain age if their bowels were as well functioning as they used to be...

I'd also be interested in knowing whether the increase in incontinence and urgency was multiple times daily, once weekly, once monthly, once yearly...not enough info here to draw helpful conclusions. My pouch is 23 yrs. young and going strong. As the years have passed I've continued to learn about its subtleties. I'd do it all over again in a heartbeat. Quality of life is very good, esp. in light of the trauma one's body endures in having this procedure. 

Rose

I actually thought the last 5 years my pouch had better function when not inflamed with pouchitis. 

I had last surgery for the pouch in 1988.

I had pouchitis every year since 1988.

Recently my doctor told me I would have to bo back to a stoma. No dice for me.

I stopped the Flagyl for good and will rely in a more dairy food and gluten free diet.

I hope I have good luck.

I read about charcoal pills and I might try that.

I hope someone can shed an opinion on this matter who has had the Jpouch for for 25 years.

testy

the lowFODMAP diet has helped me control pouchitis, to a certain and limited extent.  along with entyvio i was able to get off of antibiotics.  however, that changed in july and i've never figured out why.  am scheduled for the k pouch next month.  a better option than the bag in the opinion of k pouchers.

i have not been able to reintroduce many of the FODMAP foods and realize that even with the k pouch  i will be on the diet for life.  as is usual with us folks with the gi system from hell, it is a matter of managing the problems for a limited time then on to other problems and new ways of managing them.  jlh

Thank you for your input.

I do not wish to sound uninformed, but what is the Fodmap?

Please explain!

Thank you,

Testy

Also, what is entyvio? I am sorry, but I do not know any of the newer solutions.

Testy

Entyvio is an infusion that suppressse immune system.

google lowFodmap diet, esp Monash U info. Should get you started. I've posted information about it on this forum   jlh

I found all online.

Thank you kindly and good health.

Testy

entyvio is $$,$$$ and not sure all insurances cover it.  lowFODMAP is easier with a dietitian's help, but i did figure out the diet myself.  if you go on it get the monash app.  it makes all the difference for me.  will need to stay on it even when the pouch is out.  pity, but a reality.  we only manage the diseases, never resolve them.  right?

keep me posted.  jlh

Entyvio is an option offered to me. 

JLH

if you have pouchitis with the  jpouch why do your Drs think with a k pouch you will not also get pouchitis? I never thought of asking about that option cause I figured pouchitis would come back with a k. Who did u decide to use? I'm in NY as well and need to make some choices soon.

Thanks

allykat

looks like we are on two forums!!

for a k pouch consult i went to dr. bauer, who is considered one of the top surgeons.  he doesn't take medicare, which is the major reason as to why i am going to cleveland clinic.  if you aren't on medicare he might take your insurance.  while there i also saw dr. peter rubin for a scope.  he is not a surgeon, but a fantastic doctor in terms of listening and compassionate.  you might go to him for a second opinion?  he's with mt sinai   

also, go to k pouch korner for list of surgeons.  good luck today!  janet