Ostomy bag vs J-Pouch (emptying)

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SwollenColon
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Date Joined Nov 2006
Total Posts : 190
   Posted 4/10/2015 2:42 PM (GMT -6)   
I'm emptying my bag about 10x/day, and I'm only letting it get 1/3-1/2 full before emptying. Any idea how, or if, this will correlate to my j-pouch after take-down?

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 4/10/2015 3:34 PM (GMT -6)   
From my understanding and experience your ostomy output doesn't correlate to how often you will need to empty your j-pouch.

I had really high output with my loop ileo, with my jpouch I am emptying 2-5 times a day.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cyclosporine -- Twice
3-step J-Pouch surgery:
Colectomy- October 2013
J-pouch Creation: March 2014
Take-Down: June 2014

Virdent
Regular Member


Date Joined Nov 2014
Total Posts : 126
   Posted 4/10/2015 3:58 PM (GMT -6)   
I don't believe there's any correlation, with a healthy pouch you should go 5 to 8 times, some go a little less and some a little more, also keep in mind quite a few of these could just be pee breaks that you release whatever you can at the same time.

I go around 4 to 6 a day, sleep through most nights, I only take a single Immodium at night and Its been about 3 months since my takedown.

This is possibly a good time to start seeing what foods may go through you faster than others, do any foods slow you down, such as rice, potatoes, bread, etc? Have you noticed juice or sweets increasing your output?! It's science time, everything you learn now you can carry over.

I personally use rice and potatoes as my bulkers and stay away from wheat in general, others swear by bread or Metamucil but I've been better off without em!

Post Edited (Virdent) : 4/10/2015 3:04:55 PM (GMT-6)


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 4/10/2015 4:30 PM (GMT -6)   
It's russian roulette, I'm five months post takedown, have lots of discomfort, use the toilet at least twice what I did with my ostomy, and may end up going back to one. Boy, do I envy Keith and Virdent!

Virdent
Regular Member


Date Joined Nov 2014
Total Posts : 126
   Posted 4/10/2015 4:46 PM (GMT -6)   
Hey Silent, if a surgeon has looked inside your pouch and it seems fine Id seriously try going paleo for a month or atleast staying clear of wheat and gluten. I've replaced the breads with mostly rice, veggies and meat.

I would also highly recommend trying this, pepto bismal 2 tablets before bed as well as well as a good probiotic during the day and see if it helps any.

SwollenColon
Regular Member


Date Joined Nov 2006
Total Posts : 190
   Posted 4/10/2015 5:35 PM (GMT -6)   
Bananas, peanut butter, pretzels.....and bad carbs (pastries, cake) seem to thicken mine. But I'll still have liquidy output along with the thicker output. I'm taking a couple loperamide per day as well.

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4549
   Posted 4/10/2015 9:44 PM (GMT -6)   
For me the difference between my ileostomy and my j pouch is like night and day. I had high output from my ileo....had to constantly empty the bag....and with my j pouch I only go an average of 4x a day. And that's been pretty much from the beginning.
Marianne
DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs.Very happy j- poucher!
Inability to absorb iron. Infusions every 4 months.

Pluot
Veteran Member


Date Joined May 2012
Total Posts : 2500
   Posted 4/11/2015 7:05 AM (GMT -6)   
The output from my end ileo was always super thick (almost like a regular BM, I told my surgeon it was my first time having a solid BM in years!), the output from my loop was always like running water (lots of loperamide, pretzels, etc until takedown), and my j-pouch is usually somewhere in the middle. It honestly doesn't really matter to me because I empty the same amount (5-6x/day) no matter what the consistency is. The only things that affect my frequency are if I eat *a lot* or if I eat a lot of green leafy vegetables (the only food that really bothers my pouch).

In short -- I think Silent Lucidity is right, it's mostly up to chance.
Liz, 27
itslikethisuc.blogspot.com

dx'ed UC pancolitis 5/12

past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema

current meds: none!

step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
step three: takedown 7/31/13

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 4/11/2015 3:39 PM (GMT -6)   
Virdent; I have been thinking about the probiotic thing just lately. Need to go and see my Doc and find out if our NHS here in the UK will supply them. There's also a drink here called "Yakult" I've been thinking of trying, it's readily available in most supermarkets, but I'm not sure what would reach the gut alive. Can't harm to try though.
I knew this was a game of chance, it's why I stuck with my end ileo for over three years. Haven't given up just yet, but some days are hard to deal with and worse than about 90% of my UC flares, and I dealt with that for sixteen years.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Sub-Total Colectemy Feb 2011.
Two months post takedown and not a happy bunny!
"How can I be lost,when I've got nowhere to go?" James Hetfield-Unforgiven III

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10559
   Posted 4/11/2015 9:10 PM (GMT -6)   
Russian roulette is a good analogy. That's pretty much exactly what it feels like, except you don't die but sometimes you wish you had.

I don't post much on HW anymore, because after 15 years of this utter nonsense, I have nothing positive or uplifting to say. I think disease severity is largely down to genetics and that none of the current meds alter your prognosis by very much, or else only delay the inevitable.

That said, I will probably play russian roulette one last time by having reversal surgery. Saw my surgeon last month; she was surprisingly willing to do the surgery, no reluctance on her part at all. Aside from the risk of the Crohn's returning, I'm about as good a candidate as can be for this type of surgery, but I'm under no illusions. I'll only be trading one set of problems for another, and have a small but not negligible chance of making everything far worse than it is now.

But whatevs. I'm going to give it a go because I'm dumb skull
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, Azathioprine, 6MP, Remicade, Methotrexate, Humira.
Diet didn't make any difference either.
Became steroid-dependent.

Had surgery 2/13 - subtotal colectomy with end ileostomy. Currently on no meds and in remission. Also prone to depression and anxiety. Ask me anything >_>

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8358
   Posted 4/12/2015 8:48 AM (GMT -6)   
hey, there's a lot to be said for being dumb - it has served me quite well over the years !

anywhoo, that is awesome nice ! worth a go, right ? how much worse can sh!tty be ?

any idea when this ridiculously dumb event will take place ?

hope things are well otherwise ? living arrangements working out ok ?

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4549
   Posted 4/12/2015 11:00 AM (GMT -6)   
It really is NOT Russian roulette or chance or whatever. I've talked to many j pouchers over the years and the majority say the same thing: The bag needed to be emptied a lot more often than their j pouch. That's with a loop ileostomy though. I never had an end ileostomy so I cannot speak for that. I would imagine the end ileostomy and the j pouch would be the same amount of emptying.
Marianne
DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs.Very happy j- poucher!
Inability to absorb iron. Infusions every 4 months.

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 4/12/2015 1:17 PM (GMT -6)   
My experience thus far:
End ileo emptyings=less than j-pouch emptyings.
Loop ileo emptyings=same, or less, than j-pouch emptyings.
Physical discomfort from either ileo=occasional skin burn, with plenty of remedies, and no internal discomfort.
Physical discomfort from j-pouch=lots, sphincter spasms, often radiating up into my testicles, which can be very painful.
My experience of the pouch is it's russian roulette (a game of chance). I'm not saying you shouldn't get one done, but it's best to hear good and bad accounts and get the full picture.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Sub-Total Colectemy Feb 2011.
Two months post takedown and not a happy bunny!
"How can I be lost,when I've got nowhere to go?" James Hetfield-Unforgiven III

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 4/12/2015 9:25 PM (GMT -6)   
SL,

I've had pouchitis since my takedown, so things haven't been comfortable for me and I've tried all sorts of things to try to fix it; Flagyl, Xifaxan, Entocort, Sulfasalazine, and VSL#3....I'm probably forgetting a few things.

I went for a flex-sig last month and they found 3 ulcers in my pouch which were causing me problems; the GI suggested that it could be CD but the pathology results were inconclusive.

The mention of CD as a diagnosis was a real "come-to-Jesus-moment" for me and I got serious about my health and my pouch. So I decided to cut all sugars and most carbs from my diet and within 2 weeks I started to see results, my digestive tract was making much less noise & there was less pressure, things were moving better and my BMs improved. My arthritis in my hip even went away, I think it is also related to the pouchitis, like some people have tailbone pain from pouchitis.

But I was still having some minor burning problems and during my GI visit last week my GI prescribed me Augmentin to take with the Flagyl and Entocort. Within about 3 days the new combination made all the difference and now I don't even know my j-pouch is there, it feels like when I had my healthy colon.

The real test is when I discontinue the meds and hopefully the pouchitis doesn't come back but for now I finally found something that works for me. It's taken me about 9 months to find what works, I've also had c.diff, Thrush and stritchers along the way.

I've never been a big believer in diet and was skeptical that it would work but I did see a big difference in my symptoms once I cut all the sugars and some carbs out of my diet.

I hope that you find something that can get your pouch working properly; have you tried a combination of antibiotics and have you been tested for SIBO(breath test)?
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cyclosporine -- Twice
3-step J-Pouch surgery:
Colectomy- October 2013
J-pouch Creation: March 2014
Take-Down: June 2014

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 4/13/2015 5:32 PM (GMT -6)   
Keith; thanks for the advice. Unfortunately things move very slowly with our NHS here. That's not to be ungrateful, I've had lots of good treatment costing thousands of pounds over the years. So far I haven't even had my pouch scoped and nothing has been mentioned about doing so, let alone any other tests. This is something I will have to address at my next appointment with my surgeon, as it seems crazy to me that he doesn't want to look inside, despite my complaints.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Sub-Total Colectemy Feb 2011.
Two months post takedown and not a happy bunny!
"How can I be lost,when I've got nowhere to go?" James Hetfield-Unforgiven III

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 4/13/2015 9:28 PM (GMT -6)   
If you haven't had your pouch looked then I wouldn't give up on your j-pouch just yet until you get proper treatment for a new pouch. Many of us have stitchers that need dilations during the first few months, even multiple times. I'm on my 3rd dialations.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cyclosporine -- Twice
3-step J-Pouch surgery:
Colectomy- October 2013
J-pouch Creation: March 2014
Take-Down: June 2014

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10559
   Posted 4/14/2015 8:05 AM (GMT -6)   
Holy crap, nobody wants to go through months and months of medical procedures, meds, and dietary changes. This is why we have surgery: to stop this nonsense, not to carry it on afterwards! I would be utterly gutted if I had reversal surgery and had to go through all that. (And, please, no "but it's much better than UC!" Maybe it's better than your UC but it doesn't sound much better than my Crohn's. And even if it's better, it would still piss me off, given how surgery is given the hard sell on these boards.)

Edit: Hey stud dude, I got your email. I'll respond to that this afternoon; well, hopefully I will :p

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 4/14/2015 4:22 PM (GMT -6)   
Keith: My first takedown was aborted due to strictures, dilatation was done while still under. Second time around, dilatation was done again, but takedown was carried through. Since then I've had two outpatient appointments and my surgeon has carried out digit exams at both. At the last one, he declared me completely free of stricture, with a very healthy anastamosis. So, as far as I'm told, strictures aren't causing my issues.
Swollen Colon: My apologies if I'm hijacking your thread a little.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Sub-Total Colectemy Feb 2011.
Two months post takedown and not a happy bunny!
"How can I be lost,when I've got nowhere to go?" James Hetfield-Unforgiven III

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 4/14/2015 4:27 PM (GMT -6)   
NOCT: Not everyone gets a result they think is better than their UC. I'd gladly trade back for my Colon. It was only the final flare that caused the need for surgery, and at least two new drugs have come to market since then. At least with UC I had hope, hope that current drugs would work, or new ones down the road. Now I'm stuck with an angry pouch. Either that, or get MORE surgery, to end up with a bag again. I don't often vent, and have taken my knocks over the years, but I'm getting seriously p****d off lately.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Sub-Total Colectemy Feb 2011.
Two months post takedown and not a happy bunny!
"How can I be lost,when I've got nowhere to go?" James Hetfield-Unforgiven III

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10559
   Posted 4/15/2015 2:42 PM (GMT -6)   
SL: I think the worst decision I've had to make in my life so far was the decision to have surgery. It's a horrendous choice to have to make, and if you regret it afterwards then nobody wants to hear about it. If there's nothing which can be done about it, then people lose interest almost immediately. It's a burden that you are left to shoulder alone, by and large.

And then we get the added joy of making the surgery decision all over again! I've got until 20th April to put my name down on a waiting list for surgery. Nobody can give me any advice apart from the surgeon, and she doesn't have to live with the aftermath. I'll probably go for it, but I'm not remotely looking forward to another stay in that horrible surgery ward, and the months of pain, etc. afterwards. I'm also worried about strictures 'cos of the Crohn's; if I need dilatations, they'd better anaesthetise me up to the eyeballs first, yo.

Gosh, this disease sucks. Anyway, all I can do is hope that your j-pouch function improves, bro. It's a bit lame, but sincerely meant.
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, Azathioprine, 6MP, Remicade, Methotrexate, Humira.
Diet didn't make any difference either.
Became steroid-dependent.

Had surgery 2/13 - subtotal colectomy with end ileostomy. Currently on no meds and in remission. Also prone to depression and anxiety. Ask me anything >_>

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16719
   Posted 4/16/2015 6:24 PM (GMT -6)   
NiceCupOfTea said...
Holy crap, nobody wants to go through months and months of medical procedures, meds, and dietary changes. This is why we have surgery: to stop this nonsense, not to carry it on afterwards! I would be utterly gutted if I had reversal surgery and had to go through all that. (And, please, no "but it's much better than UC!" Maybe it's better than your UC but it doesn't sound much better than my Crohn's. And even if it's better, it would still piss me off, given how surgery is given the hard sell on these boards.)


I certainly don't want to go through all that. It sounds like a nightmare, same as having UC, except there is no chance of remission, only hope of finding a way to get around the obstacles.

When I went for a 2nd opinion the dr told me because of some lab work that was run, it showed I was likely to have a bad result with a j-pouch. It makes me feel like i should hang on to my colon unless it's going to kill me.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: entyvio / Apriso

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4549
   Posted 4/16/2015 7:16 PM (GMT -6)   
[quote]"When I went for a 2nd opinion the dr told me because of some lab work that was run, it showed I was likely to have a bad result with a j-pouch"

How could anyone possible know that? From lab work? Strange thing to tell someone. I don't think there's been many people sicker than I was going into surgery and my result has been text book.
Marianne
DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs.Very happy j- poucher!
Inability to absorb iron. Infusions every 4 months.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16719
   Posted 4/16/2015 8:23 PM (GMT -6)   
The GI said that the results of my blood differential test showed a high number in some category and statistically, people with a high number, have a worse result and frequent pouchitis.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: entyvio / Apriso

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 4/17/2015 4:28 PM (GMT -6)   
notsosicklygirl: The j-pouch isn't the only option, if your UC is bad, then an end ileostomy may well be a better choice for you.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Sub-Total Colectemy Feb 2011.
Two months post takedown and not a happy bunny!
"How can I be lost,when I've got nowhere to go?" James Hetfield-Unforgiven III

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 4/18/2015 3:07 PM (GMT -6)   
that's right, nssg- you practically know personally at least 2 people, embersglow & myself, who could not be happier with our end ileos. And I believe SL is none too thrilled with his pouch either, but seemed to do just fine with his ileo. It seems so foreign, I get it- but seriously, it just becomes the norm really quick. Don't let the thought of one scare you off, if that's a reality.
diagnosed w/UC 2002
Tried Asacol, Rowasa, Pred, Cortenemas, Uceris, Rocephin, Cipro, Flagyl, Imuran, Remicade, Humira, turmeric, slippery elm root, marshmallow root, probiotics, homemade kefir, ayurveda, yoga, meditation, mindfulness, reiki, SCD, vegetarian, dairy free, nothing processed, gluten free... proctocolectomy w/end ileo on 4/14/14!
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