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How long does a j-pouch last?

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Ulcerative Colitis
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Deleuze
Regular Member
Joined : Nov 2007
Posts : 22
Posted 9/30/2008 1:25 AM (GMT -6)
Since surgery is looking more and more like my only option, I have been coming up with some questions for the j-pouchers and more knowledgeable folks here.

The big question that I haven't been able to find through a lot of searching of various forums is how long does the j-pouch actually last? I am only 27 years old and, if I am lucky enough, I would need it to hold up for 40-50 years. Is that even possible? Has the j-pouch even been around long enough to see if it can last?

Any extra information would be much appreciated!

-Deleuze
UC Pancolitis flare since April 2007.
Colazal, Probiotics, Multi-vitamin, Imuran, Rowasa as needed, and starting a new prednisone taper and first remicade treatment soon.
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suebear
Veteran Member
Joined : Feb 2006
Posts : 5698
Posted 9/30/2008 7:31 AM (GMT -6)
Since the jpouch is created with parts of your current anatomy it should last as long as you do. There are no long term studies on this as the surgery has only been around since the late 1980s. However, there are many veterans of the surgery in the 80s who are still going strong with jpouches over 25 years old.

Sue
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Deleuze
Regular Member
Joined : Nov 2007
Posts : 22
Posted 9/30/2008 12:23 PM (GMT -6)
Thanks Sue.

I figured it hadn't been around long enough to see if it will be stable for 40-50 years. I hate not knowing for sure, but I guess that's my own issue!

You make a good point that it isn't synthetic but organic, but it is still an artificially created apparatus. That is what concerns me that maybe after a certain period of time it just gives out.

The reality is I don't have any other options though, so a j-pouch is inevitable.

-Deleuze
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Gargamel
Regular Member
Joined : Apr 2006
Posts : 172
Posted 9/30/2008 12:34 PM (GMT -6)
Is the J-Pouch Surgery very painful?

I've recently seen the graphic pictures on Marks excellent blog (http://ucstory.wordpress.com/) and all the pipes and tubes coming out of his abdomen doesn't look like fun.

G
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suebear
Veteran Member
Joined : Feb 2006
Posts : 5698
Posted 9/30/2008 1:14 PM (GMT -6)
Remember too that surgeries are perfected over the years. If in 30 years you should have a problem with your jpouch there most likely would be a surgical fix for it. Knowledge improves, techniques improve and the result is that we will be the recipient of those improvements.

Sue
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Rootcanal
New Member
Joined : Dec 2011
Posts : 4
Posted 4/14/2014 7:51 AM (GMT -6)

Gargamel said...
Is the J-Pouch Surgery very painful?

I've recently seen the graphic pictures on Marks excellent blog (http://ucstory.wordpress.com/) and all the pipes and tubes coming out of his abdomen doesn't look like fun.

G

Hey man. I had my one step J-pouch in 1997 and the surgery itself was PAINLESS. I had to tubes. I did have many post op complications unrelated to the surgery itself, but compared to my life with U.C., it’s improved. I do get a lot of pouchitis which puts me back on short-terms meds, but through the use of PROBIOTICS (a life saver in my experience) and antibiotics to keep things “in check,” and although a JPOUCH presents a change in lifestyle, it is a good surgery and again, painless in my experience.

Of course there is post op pain in the incision area. I don’t know if they’re doing it via laparoscopically now, but to hook everything up they must go in through the anus. No problems with that at all. My only true pain was soreness in the muscles they had to cut through in the abdomen.

Glad to answer any questions from anyone if I can help.
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ByeByeUC
Veteran Member
Joined : Feb 2011
Posts : 4586
Posted 4/14/2014 10:59 AM (GMT -6)
It'll last as long as you do. :)

I considered the surgery to be painful but hey, what surgery isn't? The hospital always does a great job keeping people comfortable with the pain meds.
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Pluot
Veteran Member
Joined : May 2012
Posts : 2500
Posted 4/14/2014 11:17 AM (GMT -6)
Studies show that the pouch tends to perform a little worse as time goes on (e.g. stuff like increased stools per day, etc), but quality of life ratings remain steady. It's also worth noting that even "normal" equipment wears out over time... many older adults without IBD have issues with constipation, frequency, incontinence, etc. It's part of the aging process. You can preserve your pouch function by maintaining your overall health and avoiding behaviors that place stress on the pouch, like straining during bowel movements.
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Somedude
Veteran Member
Joined : Jul 2011
Posts : 3393
Posted 4/14/2014 12:40 PM (GMT -6)
" although a JPOUCH presents a change in lifestyle"

Why does it have to be a change in lifestyle. What did that mean for you. Why can't we have a normal lifestyle?
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16372
Posted 4/14/2014 12:57 PM (GMT -6)

Somedude said...
" Why does it have to be a change in lifestyle. ... Why can't we have a normal lifestyle?

Cuz we're screwed dude. A jpouch may, undoubtedly improve one's quality of life but there is no going back to the pre-uc days.
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Somedude
Veteran Member
Joined : Jul 2011
Posts : 3393
Posted 4/14/2014 12:59 PM (GMT -6)
"Cuz we're screwed dude. A jpouch may, undoubtedly improve one's quality but there is no going back to the pre-uc days."

why, I want old pre-uc days.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16372
Posted 4/14/2014 1:03 PM (GMT -6)
Yeah me too dude, me too.
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ByeByeUC
Veteran Member
Joined : Feb 2011
Posts : 4586
Posted 4/14/2014 1:22 PM (GMT -6)

Somedude said...
" although a JPOUCH presents a change in lifestyle"

Why does it have to be a change in lifestyle. What did that mean for you. Why can't we have a normal lifestyle?

I haven't changed my lifestyle by having a j pouch. Not sure what that's supposed to mean.

Anyway, I just realized the beginning of this thread was from 2008. I wasn't paying attention.
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Mary Loar
New Member
Joined : Jan 2015
Posts : 1
Posted 1/1/2015 5:54 PM (GMT -6)
I had my J pouch done in 1984. It was very experimental at that time and I was the 13th to have the surgery in Scottsdale, AZ. In 1999 after 5 years of problems, it was found that my staples had come loose and I was eliminating from two places and was becoming toxic. My J pouch was redone and I have been pretty trouble free since until about November when I started with pain in abdomen and have gone down hill from there. They think I may have pouchitis but do not see gastro until Jan 27. I think the J pouch is wonderful and I would never want to be without mine. I am now 75. Good luck to you all.
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CosmicRay
New Member
Joined : Aug 2015
Posts : 5
Posted 8/25/2015 1:40 PM (GMT -6)
I think the biggest issue is that we are not taught my the medical system to care for our pouch properly.

I have had a pouch for 13 years and it took me 8 years after having my op to realise for myself what damage I was causing my pouch.

For a start, getting pouchitis and then taking antibiotics is a cycle you don't want to get caught in… that will be your life… Taking antibiotics wiped your good bacteria which you need in order to keep your whole digestive tract and most importantly your pouch, clean and clear. If you do take antibiotics, you MUST supplement with a good 3 month course of probiotics.

I think we should be on constant probiotics anyways - all with a pouch - its just always keeping you on the safe side. And to be honest, with the excessive amount of carbs generally eaten by the peculation, we should probably all be on probiotics all the time.

The key is really to prevent yourself from ever getting infections - pouchitis. The more you get this over your lifetime, the more your push degrades. So eating a diet that is tailored to someone with a pouch is paramount.

I've actually gone back to school to study to be a Naturopathic Nutritionist because I believe so much we need to be educating people of the world how and what to eat.

Safe pouch diet to keep your pouch for as long as possible…

CUT OUT
Gluten (zoulin in gluten damages gut cell tight junctions creating a permeable gut = leaky gut)
Sugar ferments in the gut and causes gut dysbiosis - overproduction of bad bacteria that excretes waste in your gut and stops the good bacteria from doing its job aka digesting food, trapping invaders like heavy metals, nasties etc)
Red meat doesn't digest well and rots in your stomach creating inflammation and infection
LIMIT TO A MINIMUM
Starchy flours and veggies that break down into sugar - see above
Dairy (cows) which is hard to digest as we don't have lactose - sheep and goat products are ok but should still be kept as a treat
Alcohol breaks down as sugar see above and also damages gut cells
Grains could damage gut wall cells if you have leaky gut
Simple carbohydrates - again pasta, rice etc all break down into sugar see above

WHAT TO EAT??

Fish
Veggies
Herbs
Plants
Flowers
Nuts and Seeds preferably soaked for 24 hours to prevent them from damaging the gut wall, nut butters are AMAZING
Pulses and legumes soaked for 24 hours also see above

So how do you treat yourself??

There are amazing products out there, you just have to look and find them…

Cashew nut ice cream in different flavours
Sweet potato chocolate cakes
Xylitol substitute for sugar
Coconut flour bread
Cornbread
Frozen banana coated in raw cacao sauce then frozen
ETC ETC

The worst thing you could do is to keep behaving and eating the same things as you did pre-op… Keep your pouch for life by making the corrections to your diet you need to keep your gut inflammation free!

PS - I have not had pouchitis for 3 years now due to changing my diet and hopefully I never will get it ever again!
WITH BIG LOVE
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MaryBethN
New Member
Joined : May 2021
Posts : 1
Posted 5/31/2021 6:31 PM (GMT -6)
Hello Ray, This was an old post so I’m hoping you will get this message. Wow, your story sounds very similar to my daughters! She (Lily) had surgery in 2015 as a senior in HS and had major issues for 2 years with pouchitis. I knew a bit about natural health and it never made sense to me why her GI encouraged her to eat “bulking” foods like bread, pasta etc. Isn’t it common sense that those foods feed bad bacteria?? So I took her to a naturopathic dr who told her she needed to heal her gut and change her diet. At that time she didn’t want to change and kept going through the vicious pouchitis/antibiotic cycle. After Flagyl ended up giving her neuropathy symptoms and then Cipro gave her panic attacks, thats when she finally realized she needed to make changes. She did what our naturopath had been telling her and cut out all refined sugar and processed foods. 4 years later and no pouchitis or cuffitis! She became so passionate that she decided not to go to PA school and got her undergrad in human sciences with a minor in integrative and holistic medicine, she is now doing her masters in nutrition. I got on here because I’m am trying to find her a naturopath that knows more about jpouch. She has a pretty good doctor but sometimes I feel she forgets Lily’s body isn’t like her other patients. Lily is doing great but I would really love to put her in touch with someone who knew more about anatomy and things to look out for, test for etc. How are you doing? Are you working in the naturopathic field? I love to read other stories like this, people who go through Heath issues are the ones who make the best health advocates and who make the most difference in our health care system! Hope to hear from you, Mary Beth
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