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how not to get pouchitis?
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I have had my jpouch for about 4 months. I got pouchitis about one month after surgery and was on flagyl for 40 days and felt great. Then I got the return of pouchitis and was on flagyl for 2 weeks. Now I feel great again. I have gotten 3 months worth of supplies of VSL #3 DS and I hope that helps so I don't get the return of pouchitis. But I was also wondering from all the jpouchers out there, what is the secret of not getting this nasty stuff... Is there certain foods you eat or certain things you do that keeps these flares away... If you have any tips, please send them my way..

Thanks,

Jason Gardner
 
Posts: 32 | Location: topeka | Registered: October 03, 2011Report This Post
Picture of KissMyOstomy
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Its not something you can control unfortunately. It's kind of like not getting ulcerative colitis. You can try to address the flares through diet and supplements/drugs but it is what it is.


http://www.spillingmyguts.net

http://www.facebook.com/pages/...248335972119?sk=wall

Diagnosed with UC - 10/2003
J-pouch created - 06/23/09
Takedown - 09/15/2009
Diagnosed with chronic pouchitis - 8/2011
Perm ileostomy - 12/13/2011
 
Posts: 375 | Location: Charlotte, NC | Registered: April 19, 2009Report This Post
Picture of Jan Dollar
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Invent a time machine and go back and pick different ancestors who do not have IBD genes. Oh wait, that would not prevent individual mutations in you....

Supposedly, probiotics are the best option for prolonging the remission time. But, just like with IBD, sooner or later relapse happens, and like earthquakes, the longer the interval, the more likely another event is around the corner. I am hoping that being on Simponi is going to keep me in remission. That, and taking two different probiotics faithfully!

Jan Smiler


Take a deep breath and relax; this too will pass.
 
Posts: 22349 | Location: Fremont, CA, USA | Registered: April 07, 2000Report This Post
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I agree with KMO and Jan - if you're going to get it, you're going to get it ...

That being said, I would suggest, if you don't already, avoiding NSAIDs. I ate them like candy through the first 10 years of my pouch, as well as pre-pouch - I think they absolutely contributed towards my pouchitis problems. Like Jan, I take 2 different probiotics (VSL#3DS and s. boulardii) every day.

Good luck with your new pouch!
 
Posts: 784 | Location: Ohio | Registered: March 10, 2004Report This Post
Picture of Jan Dollar
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Hey Nancy, did you know that S. boulardii is in VSL#3? That is the reason I take it (I don't take VSL#3, it's is too spendy for my purse).

Ditto on the NSAIDs. I was in the same boat. Took lots of NSAIDs to deal with arthritis over the years post colectomy. Got away with it for a long time, then had liver inflammation and had to quit. While I did not have big pouchitis problems, things did calm down after stopping NSAIDs. But, taking NSAIDs did buy me time before Humira was approved for ankylosing spondylitis. My joints did feel so much better with NSAIDs, but I think my liver was more important....

Jan Smiler


Take a deep breath and relax; this too will pass.
 
Posts: 22349 | Location: Fremont, CA, USA | Registered: April 07, 2000Report This Post
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Nope, Jan, didn't know S. boulardii was in VSL#3. Good to know, thanks!
 
Posts: 784 | Location: Ohio | Registered: March 10, 2004Report This Post
Picture of CTBarrister
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I have had chronic pouchitis for 16 years, treatable with antibiotics. Occasionally I will have bad flares not fully nipped in the bud by antibiotics, or at the end of one rotation of antibiotics. As far as I can see, there is no rhyme or reason to what brings these episodes on. If there were, I would seek to prevent them. What I have noticed is that my acne problems (I get acne on my chest and back) get really bad at the same time when my pouchitis flares. What that suggests in my mind is that the autoimmune response is globally whacked out on those occasions, not just in my pouch, but all over my body. Fortunately, these episodes are infrequent.


CTBarrister
UC - 1972 as a 9 year old
Takedown 1992
Chronic Pouchitis Onset 1995
Still J Pouching 2013
 
Posts: 2987 | Location: Connecticut, USA | Registered: April 12, 2007Report This Post
Picture of CTBarrister
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Actually after thinking about this question some more I can offer 2 tips on how to reduce the likelihood of bouts with pouchitis:

1. Consistent and regular fiber intake. I have taken various fiber products including metamucil. They promote regularity but they also assist in the smooth evacuation of fecal matter from the pouch which is critical in keeping the pouch functioning as it should. In the past when I stopped taking fiber, various foods would get semi-digested and I would have a feeling of the pouch being "gummed up." Taking fiber really helps prevent this from happening.

2. Be careful with thickening agents like Imodium. I am very sensitive to Imodium and if I take 2 or more, it really thickens me up. If you get too thick things get gummed up in the pouch and you will enhance the chances of getting pouchitis. In the past if I took 4 imodium in a day I would have no bowel movements which would be great, but then I would have pouchitis for a few days or more. It's better to be regular than to be sorry. I used to take a lot of imodium for trips into New York City because public bathrooms are hard to find there, but one day with no bowel movements is not worth trading for the next 5 with pouchitis. I devised a compromise approach, where I take an antispasmodic and 2 imodiums before my lunchtime meal, and then I am good to go with 2 metamucil wafers when I get home at bedtime. As long as I am keeping things moving I am OK.

These dosages may vary for others. Like I said as far as thickening up I seem to be more sensitive than most people are to the effects of Imodium, so I can take less and respond well.


CTBarrister
UC - 1972 as a 9 year old
Takedown 1992
Chronic Pouchitis Onset 1995
Still J Pouching 2013
 
Posts: 2987 | Location: Connecticut, USA | Registered: April 12, 2007Report This Post
Picture of AllyKat
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Besides VSL#3 D I take anti inflamatory vitamins like EPA-DHA 6:1 Fish oil, Curcumin 1000mg, and lot's of Vit D. I have my blood levels checked every 6 months.


UC 1996

-5 asa, predisone, 6 mp
-Dec 26, 2000, Emergency j-pouch surgery
-Multiple complications, J-pouch redo- July 3, 2001.
-Take down-Jan 3, 2002
-Chronic pouchitis: cipro, pentassa, xifican, cortifoam, canassa, leviguin, lexapro
-Gall bladder out-Oct 1997
-April 2010 bad pouchitis flare-remicade (only 2 doses)
-Aug 2010-adhesion surgery
-Doing great! only canassa!for pouchitis and lot's of suppliments!
Oct 2011-so much for adhesion surgery!
August 2012 c-diff
July 2013 surgery to remove liver cyst
Nov 2013 Pouchitis , endocort! xifaxan! canassa! cortifoam! bultrate suppostories
 
Posts: 2376 | Location: Rockland County, New York | Registered: December 22, 2000Report This Post
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Here's what worked for me...

Psyllium Fiber - I use Konsyl since there is zero sugar. The soluble fibers don't work for me and metamucil has too much sugar.

Little to no sugar - This means few fruits and even fewer foods with any processed or added sugars.

Threelac is my probiotic supplement of choice. Used to do 3 time/day now I'm twice.

Natural probiotics - Water kefir, milk kefir and cultured foods (I now make my own sauerkrauts, kimchi, etc.)

Before I found these things, I had the recurring pouchitis symptoms and the docs kept me on the antibiotic yoyo. Since I've switched, almost all my symptoms are gone. Best of luck to you!
 
Posts: 5 | Location: West Chester PA | Registered: August 30, 2011Report This Post
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quote:
did you know that S. boulardii is in VSL#3? That is the reason I take it


To Jan :

which brand of S.Boulardi are you using ? Need to try something other than Flora Q

David
 
Posts: 1 | Location: woodland hills ca | Registered: May 26, 2010Report This Post
Picture of skn69
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Not that this has any scientif basis whatsoever but...French cheeses are made with raw milk and bacterial cultures that have been around for centuries (sometime nearly 1000 yrs)...I think that I can trace a lower frequency and lessening of poucitis to when I moved here and started eating all of that blue and green cheese (the smellier the better!)...that and tons of raw milk yoghurt (pasturizing kills the good bacteria!)etc that allowed my North American guts to get introduced to 'good' bacteria.
I eat very little bread or flour based products (so much for bread and cheese) and stick to protiens (fish/chicken and very little meat), fruits & veggies...all fresh and natural with NO prepackage, pre-cooked or pre-prepared foods (not even cookies). It keeps all of the chemicals away from my guts.
My only exceptions are chocolate and milk products like icecream (sorry but I can't stop myself.
Somehow it works for me and my family.
I think (again, no scientific basis) that all of those nasty artificial colorants, flavours and chemical additives go a long way to hurt our guts and make things worse in there.
By the way, here when they give you a script for antibiotics they automatically give you one for brewer's yeast too.
Sharon


It could be worse...oh, wait..it already has been! then I guess it can only get better from here....
 
Posts: 4568 | Location: Paris, France | Registered: July 29, 2007Report This Post
Picture of Jan Dollar
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I use the Jarrows brand from Amazon.com. It is cheap and a trusted brand. You can also get it on subscription, so you don't have to order huge quantities in order to make it worth ordering online. Works out to be 15 cents per capsule.

Jan Smiler


Take a deep breath and relax; this too will pass.
 
Posts: 22349 | Location: Fremont, CA, USA | Registered: April 07, 2000Report This Post
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hi i use florestor i buy on internet for my ssbulgarii..and i take culturelle doubled up..

i started ssbulgarrii to prevent my gettingc-diff again..

rebe


Rebecca
 
Posts: 606 | Location: Santa Barbara | Registered: March 11, 2007Report This Post
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jan is jarrows like florestor..which is ssbulgarii..

rebe


Rebecca
 
Posts: 606 | Location: Santa Barbara | Registered: March 11, 2007Report This Post
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