Hello,
Sorry you are having so much discomfort.  I wonder if your doctor has
thought of long term antibiotics.  Some folk with the Jpouch have been on
Cipro for near a year and then slowly tapering off and did fine after that.
Just a crazy thought maybe.
Sure hope you get a cure as I understand your frustration and discomfort but
do wonder if long time Cipro may be a great help.
Blessings,.
Ernie
----- Original Message -----
From: "mohammadalnajjar@..." <no_reply@yahoogroups.com>
To: <jpouchsupport@yahoogroups.com>
Sent: Saturday, November 21, 2009 2:57 AM
Subject: [J-Pouch Support] Pouchitis and fistula


Hello,
I had J-pouch surgery back in 1995 due to complications from UC. In 2005, I
was diagnosed with Pouchitis and shortly afterwards I started to have
problems with Fistulas and preanail abscesses. I've had a lot of lab work
done and they all confirmed UC and not crohn's.
At this point, the fistulu and abscesses are getting to the point where I
need surgery every 5-6 months to drain them, I have had 4 surgeries in the
past 3 years . This has crippeled my life basically. I am constantly on
antibiotics, Pentasa, and every once and awhile Predinsone. At this point,
my doctor is suggesting that I consider having a temporary loop ileostomy to
let the pouch heal and hopefully that will also get rid of the fistula and
abscesses.
I am not sure what to do at this point. I am looking for help and advice.

Thanks.

My wife had her JPouch surgery in March of this year and has not had her
takedown yet due to repeated abscesses caused by a leak in her pouch that has
yet to resolve.  She has been in and out of the hospital all year.  I tell you
this because she has suffered from an extreme lack of appetite at times this
year.  She lost about 30 lbs, or about 25% of her body weight.  Our experiences
with this: if it is lack of appetite due to nausea, then see if you can't get
him something to control that.  Zofran is supposed to be about the best but my
wife said it did not work great for her, at least at home.  In the hospital you
can get it by IV and it works great.  If he still has his PICC line I guess this
might be an option.  There have been other times where she did not really suffer
from nausea but still just had no appetite.  All we could figure out was just
where she went so many days without eating, it was like her brain quit telling
her she was hungry.  With your husband going so many days without eating, this
may be what happened to him.  The doctors here gave her an appetite stimulant
called marinol (or dronabinol).  It is not super strong but it did begin to get
her eating again, albeit slowly.  This drug is habit forming, so be careful with
it.  She very slowly starts craving food again kind of like a dimmer switch
being slowly turned up by her brain saying feed me.

   My wife was on TPN as well but the doctors here are just not real crazy about
it unless it is absolutely necessary.  Just having stuff going into a vein is an
opportunity for infection.  Plus the nutrition is going around the digestive
tract, which is bypassing the body's defense mechanism that we were designed
with.  One thing that motivates my wife is the NG tube.  She hates that thing
and the doctors here say that if your digestive tract is working (pouch or
ostomy bag is producing stuff), then it is much safer to get nutrition through a
feeding tube down your nose into your stomache.  That way you are not bypassing
one of the body's defense mechanisms.

I don't mean to be negative about the TPN, there are instances where it is vital
but I think ultimately a person is going to feel better when they are eating. 
Yes you can get the nutrition you need to survive that way but I know my wife
felt much better when she was able to eat.  We will remember you and your
husband in our prayers.  Good luck.

Wayne

From: jpouchsupport@yahoogroups.com [mailto:jpouchsupport@yahoogroups.com] On
Behalf Of Jack Andrew
Sent: Friday, November 20, 2009 9:31 PM
To: jpouchsupport@yahoogroups.com
Subject: [I] [J-Pouch Support] serious problem w/appetite




PLEASE RESPOND TO MY E-mail address:
saluki@...<mailto:saluki%40texasbb.com>

I'm writing hoping someone has a solution... my husband, Jack, 81, has had a
J-pouch since '85 and overall done fairly well with it except for some blockages
and strictures from time to time. He's always been healthy, active, robust and
optimistic, up until surgery on Nov. 2.

He had routine hernia surgery Nov. 2. Shortly thereafter we realized he had a
blockage, and was having no BMs. Nov. 5 I took him to emergency room. He was
literally throwing up fecal matter. A nasal tube was inserted from Nov 6-12th.

Long story short, he was transferred to Memorial Hermann in Houston, 100 miles
from where we live, happy to get a doctor who'd done surgery on Jack in '02 for
strictures. He's a colorectal surgeon, specialist in the J-pouch.

Doctor performed a successful removal of the blockage (not major surgery). Jack
had not eaten anything from Nov. 3-13 and was being getting nutrition through a
PICC line until Nov. 13. We came back home the 14th.

THE PROBLEM... blockage removal successful, but he is not eating, has no
appetite. Maybe a total of two or three cups of food since the 14th. He's lost a
tremendous amount of weight and is very weak.

I'm calling his doctor first thing in the morning. Are any of you able to offer
a solution? I'm extremely worried.

Thank you...
Evelyn (please respond to my e-mail address,
saluki@...<mailto:saluki%40texasbb.com>.)

[Non-text portions of this message have been removed]



[Non-text portions of this message have been removed]

Hello,
I had J-pouch surgery back in 1995 due to complications from UC. In 2005, I was
diagnosed with Pouchitis and shortly afterwards I started to have problems with
Fistulas and preanail abscesses. I've had a lot of lab work done and they all
confirmed UC and not crohn's.
At this point, the fistulu and abscesses are getting to the point where I need
surgery every 5-6 months to drain them, I have had 4 surgeries in the past 3
years . This has crippeled my life basically. I am constantly on antibiotics,
Pentasa, and every once and awhile Predinsone. At this point, my doctor is
suggesting that I consider having a temporary loop ileostomy to let the pouch
heal and hopefully that will also get rid of the fistula and abscesses.
I am not sure what to do at this point. I am looking for help and advice.

Thanks.

Hi Evelyn,

Does Jack still have his PICC line?  If so,  he  should continue to take
TPN through his PICC until he gets an appetite and some  strength
back.......if his PICC is gone,  try to get him to eat  calories/energy dense
foods....ensure shakes between meals etc.  Let us  know what his doctor says in
the
morning.

Sherie
check out my website:
_http://maplebrookfarm.wordpress.com/_
(http://maplebrookfarm.wordpress.com/)
and
_Click here: Half.com /  Shops / sheriemcm / Books_
(http://shops.half.ebay.com/sheriemcm_W0QQmZbooks)


In a message dated 11/20/2009 6:31:47 P.M. Pacific Standard Time,
jak@... writes:






PLEASE RESPOND TO MY E-mail address: _saluki@..._
(mailto:saluki@...)

I'm  writing hoping someone has a solution... my husband, Jack, 81, has had
a  J-pouch since '85 and overall done fairly well with it except for some
blockages and strictures from time to time. He's always been healthy,
active,  robust and optimistic, up until surgery on Nov. 2.

He had routine  hernia surgery Nov. 2. Shortly thereafter we realized he
had a blockage, and  was having no BMs. Nov. 5 I took him to emergency room.
He was literally  throwing up fecal matter. A nasal tube was inserted from
Nov 6-12th.

Long story short, he was transferred to Memorial Hermann in Houston,  100
miles from where we live, happy to get a doctor who'd done surgery on Jack
in '02 for strictures. He's a colorectal surgeon, specialist in the  J-pouch.

Doctor performed a successful removal of the blockage (not  major surgery).
Jack had not eaten anything from Nov. 3-13 and was being  getting nutrition
through a PICC line until Nov. 13. We came back home the  14th.

THE PROBLEM... blockage removal successful, but he is not eating,  has no
appetite. Maybe a total of two or three cups of food since the 14th.  He's
lost a tremendous amount of weight and is very weak.

I'm calling  his doctor first thing in the morning. Are any of you able to
offer a  solution? I'm extremely worried.

Thank you...
Evelyn (please respond  to my e-mail address, _saluki@..._
(mailto:saluki@...) .)

[Non-text  portions of this message have been removed]








[Non-text portions of this message have been removed]

PLEASE RESPOND TO MY E-mail address: saluki@...

   I'm writing hoping someone has a solution... my husband, Jack, 81, has had a
J-pouch since '85 and overall done fairly well with it except for some blockages
and strictures from time to time. He's always been healthy, active, robust and
optimistic, up until surgery on Nov. 2.

   He had routine hernia surgery Nov. 2. Shortly thereafter we realized he had a
blockage, and was having no BMs. Nov. 5 I took him to emergency room. He was
literally throwing up fecal matter. A nasal tube was inserted from Nov 6-12th.

   Long story short, he was transferred to Memorial Hermann in Houston, 100 miles
from where we live, happy to get a doctor who'd done surgery on Jack in '02 for
strictures. He's a colorectal surgeon, specialist in the J-pouch.

   Doctor performed a successful removal of the blockage (not major surgery).
Jack had not eaten anything from Nov. 3-13 and was being getting nutrition
through a PICC line until Nov. 13. We came back home the 14th.

   THE PROBLEM... blockage removal successful, but he is not eating, has no
appetite.  Maybe a total of two or three cups of food since the 14th. He's lost
a tremendous amount of weight and is very weak.

   I'm calling his doctor first thing in the morning. Are any of you able to
offer a solution? I'm extremely worried.

   Thank you...
      Evelyn (please respond to my e-mail address, saluki@....)


[Non-text portions of this message have been removed]

thanks Sandy,
Others have it so much worse than I.  My surgeon said my sphincter muscles
are strong and any leakage must be from the earlier surgery to remove the
abscess.  He did mention the ilio again but I told him no thanks.
Doing fine.  Have a great weekend.
Ernie
----- Original Message -----
From: "Sandra Leitner" <sandra.leitner@...>
To: <jpouchsupport@yahoogroups.com>
Sent: Friday, November 20, 2009 8:41 AM
Subject: Re: [J-Pouch Support] chatting


Ernie,

So sorry to hear about your difficulties. You've been through so much and
yet you never complain.
Your sunny attitude is always an inspiration. I hope the cipro helps you.

Sandy

"Live Well, Laugh Often, Love Much"



On Thu, Nov 19, 2009 at 10:02 PM, Ernest Jones <theolcrow@...>wrote:

>
>
> Hello,
> Again I am thankful for a surgeon who wants me to keep in touch, even
> though
> it is almost 10 years. He was concerned when I say him Wednesday as I can
> not gain weight but lose it very easily. Then he took a look inside, using
> a pede scope. I think everything is okay, I hope, but there was one place
> that bothered him but when he checked it again it looked okay. Still he
> has
>
> told me to return in 6 months and not to wait the usual 1 or 2 years. So
> looks like we make the 5 hour trip again sometime next May. I can't say
> the
>
> scoping or his checking felt good but it is tolerable.
> I have been having scores of pimple like abscesses, mostly on my buttocks
> but also on my legs, body, and arm, even in my nose. I wondered if there
> could be a problem and he agreed; he figures there is some inner infection
> and it is presenting itself in this way. So I am on Cipro for 10 days. The
> good thing is this will sure help in decreasing the diarrhea.
> I also checked regarding to the Tylenol with codeine I take. He completely
> agrees with my family doctor that I am not taking enough Tylenol to do any
> hurt to my liver, still each of us are different and I have proved to
> be"different".
> He liked the idea of me using this Gold Bond powder and so far it is the
> best thing for me with an occasional use of the Nystatin cream.
> Blessings to you all.
> Ernie
>
>
>


[Non-text portions of this message have been removed]



------------------------------------

Yahoo! Groups Links

Thanks Sherie,
I pray you find another good GI.  I feel these are hard to find at times.
I also have a very good surgeon locally too but not when it comes to the
Jpouch; but the two surgeons are friends and sort of work together so this
is good.  So far I have not noticed any difference from taking Cipro but no
worse either.  My surgeon suggested a new drug for controlling diarrhea and
if I could take this I might stop both the Lomotil and the codeine.  But,
wouldn't you know it but the price is higher than gold so another hope
dashed.  Oh well, not doing too bad.  Life is good!
My but it is windy here for the past 2 days but I am sure it has even been
more windy over your way with these Pacific storms rolling in.  Stay safe.
Ernie
----- Original Message -----
From: <Sheriemcm@...>
To: <jpouchsupport@yahoogroups.com>
Sent: Thursday, November 19, 2009 9:06 PM
Subject: Re: [J-Pouch Support] chatting


thanks for the update,  Ernie.  You are so lucky to  have an involved
surgeon,  but I know you appreciate him very much.   sorry to hear of your
infection....enjoy you 10 days on Cipro!

I should probably find a new GI to do my scope,  the one  I used a couple
years ago has retired now.....I hate shopping for a dr.

take care,

Sherie
check out my website:
_http://maplebrookfarm.wordpress.com/_
(http://maplebrookfarm.wordpress.com/)

In a message dated 11/19/2009 7:03:22 P.M. Pacific Standard Time,
theolcrow@... writes:




Hello,
Again I am thankful for a surgeon who wants me to keep in touch,  even
though
it is almost 10 years. He was concerned when I say him  Wednesday as I can
not gain weight but lose it very easily. Then he took a  look inside, using
a pede scope. I think everything is okay, I hope, but  there was one place
that bothered him but when he checked it again it  looked okay. Still he
has
told me to return in 6 months and not to wait  the usual 1 or 2 years. So
looks like we make the 5 hour trip again  sometime next May. I can't say
the
scoping or his checking felt good but  it is tolerable.
I have been having scores of pimple like abscesses, mostly  on my buttocks
but also on my legs, body, and arm, even in my nose. I  wondered if there
could be a problem and he agreed; he figures there is  some inner infection
and it is presenting itself in this way. So I am on  Cipro for 10 days. The
good thing is this will sure help in decreasing the  diarrhea.
I also checked regarding to the Tylenol with codeine I take. He  completely
agrees with my family doctor that I am not taking enough  Tylenol to do any
hurt to my liver, still each of us are different and I  have proved to
be"different"b
He liked the idea of me using this  Gold Bond powder and so far it is the
best thing for me with an occasional  use of the Nystatin cream.
Blessings to you all.
Ernie








[Non-text portions of this message have been removed]

Ernie,

So sorry to hear about your difficulties. You've been through so much and
yet you never complain.
Your sunny attitude is always an inspiration. I hope the cipro helps you.

Sandy

"Live Well, Laugh Often, Love Much"



On Thu, Nov 19, 2009 at 10:02 PM, Ernest Jones <theolcrow@...>wrote:

>
>
> Hello,
> Again I am thankful for a surgeon who wants me to keep in touch, even
> though
> it is almost 10 years. He was concerned when I say him Wednesday as I can
> not gain weight but lose it very easily. Then he took a look inside, using
> a pede scope. I think everything is okay, I hope, but there was one place
> that bothered him but when he checked it again it looked okay. Still he has
>
> told me to return in 6 months and not to wait the usual 1 or 2 years. So
> looks like we make the 5 hour trip again sometime next May. I can't say the
>
> scoping or his checking felt good but it is tolerable.
> I have been having scores of pimple like abscesses, mostly on my buttocks
> but also on my legs, body, and arm, even in my nose. I wondered if there
> could be a problem and he agreed; he figures there is some inner infection
> and it is presenting itself in this way. So I am on Cipro for 10 days. The
> good thing is this will sure help in decreasing the diarrhea.
> I also checked regarding to the Tylenol with codeine I take. He completely
> agrees with my family doctor that I am not taking enough Tylenol to do any
> hurt to my liver, still each of us are different and I have proved to
> be"different".
> He liked the idea of me using this Gold Bond powder and so far it is the
> best thing for me with an occasional use of the Nystatin cream.
> Blessings to you all.
> Ernie
>
>
>


[Non-text portions of this message have been removed]

thanks for the update,  Ernie.  You are so lucky to  have an involved
surgeon,  but I know you appreciate him very much.   sorry to hear of your
infection....enjoy you 10 days on Cipro!

I should probably find a new GI to do my scope,  the one  I used a couple
years ago has retired now.....I hate shopping for a dr.

take care,

Sherie
check out my website:
_http://maplebrookfarm.wordpress.com/_
(http://maplebrookfarm.wordpress.com/)

In a message dated 11/19/2009 7:03:22 P.M. Pacific Standard Time,
theolcrow@... writes:




Hello,
Again I am thankful for a surgeon who wants me to keep in touch,  even
though
it is almost 10 years. He was concerned when I say him  Wednesday as I can
not gain weight but lose it very easily. Then he took a  look inside, using
a pede scope. I think everything is okay, I hope, but  there was one place
that bothered him but when he checked it again it  looked okay. Still he
has
told me to return in 6 months and not to wait  the usual 1 or 2 years. So
looks like we make the 5 hour trip again  sometime next May. I can't say
the
scoping or his checking felt good but  it is tolerable.
I have been having scores of pimple like abscesses, mostly  on my buttocks
but also on my legs, body, and arm, even in my nose. I  wondered if there
could be a problem and he agreed; he figures there is  some inner infection
and it is presenting itself in this way. So I am on  Cipro for 10 days. The
good thing is this will sure help in decreasing the  diarrhea.
I also checked regarding to the Tylenol with codeine I take. He  completely
agrees with my family doctor that I am not taking enough  Tylenol to do any
hurt to my liver, still each of us are different and I  have proved to
be"different"b
He liked the idea of me using this  Gold Bond powder and so far it is the
best thing for me with an occasional  use of the Nystatin cream.
Blessings to you all.
Ernie








[Non-text portions of this message have been removed]

Hello,
Again I am thankful for a surgeon who wants me to keep in touch, even though
it is almost 10 years.  He was concerned when I say him Wednesday as I can
not gain weight but lose it very easily.  Then he took a look inside, using
a pede scope.  I think everything is okay, I hope, but there was one place
that bothered him but when he checked it again it looked okay.  Still he has
told me to return in 6 months and not to wait the usual 1 or 2 years.  So
looks like we make the 5 hour trip again sometime next May.  I can't say the
scoping or his checking felt good but it is tolerable.
I have been having scores of pimple like abscesses, mostly on my buttocks
but also on my legs, body, and arm, even in my nose.  I wondered if there
could be a problem and he agreed; he figures there is some inner infection
and it is presenting itself in this way.  So I am on Cipro for 10 days.  The
good thing is this will sure help in decreasing the diarrhea.
I also checked regarding to the Tylenol with codeine I take.  He completely
agrees with my family doctor that I am not taking enough Tylenol to do any
hurt to my liver, still each of us are different and I have proved to
be"different".
He liked the idea of me using this Gold Bond powder and so far it is the
best thing for me with an occasional use of the Nystatin cream.
Blessings to you all.
Ernie

Hi Kelsey,
I had my take down about 8 weeks ago and experienced all the same problems you
are having. The first day I got out the gas pain was the worst. It gets better.
Gas-x helped me a lot. I still have slight pain with gas but it's very minor. I
stopped taking my painkillers also. If I remember correctly it took about 2
weeks for me to be able to sit, walk, get up, etc without being in pain. I
actually just realized about a week ago that the muscle pain is gone. I can
finally laugh, cough and sneeze without any pain. The day will come, I promise.
I still have slight pain near the ileostomy sight as well. That has gotten much
better with time also. I just joined this group and people are very helpful. I
didn't really have anyone to talk to about this and people have been great. I'm
pretty young so the majority of my friends don't know anything about what I'm
going through, although they were supportive it's nice to talk to people that
understand. All I can say
  is that the pain will get better but it just takes a little time. I know it
super sucks right now but keep looking for the light at the end of the tunnel.
Be well.

Mauri



________________________________
From: kelseyx007 <powderprincessluvssnow@...>
To: jpouchsupport@yahoogroups.com
Sent: Wed, November 18, 2009 1:56:02 PM
Subject: [J-Pouch Support] Surgery Part 2, take down-- some questions


Hello All,

You guys were all so helpful on my last post regarding surgery so I thought I
would turn to you again.

I had my take down operation a week and a half ago- I only had my ileostomy for
a month due to complications.  At this point, I'm still having severe pain,
especially in the morning.  It quite literally takes my breath away.  I'm
constantly waiting to take my next dose of painkillers and seem to only have a
few hours of relief each day.  How long do all these pains continue for?  I have
gas pain, surgical pain and muscle pain.  I've been taking Pepsid 2x/day and
Simethicone at max to help with the gas. For the surgical pain I'm on
prescriptions and for the muscle pain I'm taking prescription strength Motrin,
though I have a prescription for Valium- I'm just tired of feeling doped up all
the time.  I've been taking morphine as well to help with the pain in general
(though it does nothing for those nasty muscle cramps).

I know it obviously will take some time to heal, but at the moment I feel that
the pain is the same as it was in the hospital.  I still need help sitting up in
bed, I had my dad install handles on my toilet for support, everything is a
CHORE.  And that doesn't even start to cover the issues of when I'm going to the
bathroom and the weird pains I have then.

How long did it take for your pain (especially gas and muscle cramps) to go away
after your second surgery?  I notice that I sometimes have a build up of
pressure behind where the ileostomy was and the pain will  increase until the
muscle there uncramps or the gas bubble moves through.

And last but not least, does anyone have any remedies for fissures? I've been
using honey and aloe but it seems to be having minimal effect.

Thanks,
kelsey







[Non-text portions of this message have been removed]

Gone!



From: jpouchsupport@yahoogroups.com [mailto:jpouchsupport@yahoogroups.com]
On Behalf Of shantellebranden
Sent: Thursday, November 19, 2009 12:36 AM
To: jpouchsupport@yahoogroups.com
Subject: [J-Pouch Support] Two give aways to grab: keurig coffee machine
Plus flip music player





Hello Everyone

A friend just sent me a link to Two NEW giveaway offers, so I am sharing it
with the group!

Grab a Keurig coffee machine and a FLIP music player!

Click the link below to see them both

http://groups.google.com/group/collectingfreebies/web/two-great-give-aways-u
sa

I hope this helps with your budgets!



No virus found in this incoming message.
Checked by AVG - www.avg.com
Version: 9.0.707 / Virus Database: 270.14.73/2512 - Release Date: 11/18/09
14:41:00



[Non-text portions of this message have been removed]

Hello Everyone

A friend just sent me a link to  Two NEW giveaway offers, so I am sharing it
with the group!

Grab a Keurig coffee machine and a FLIP music player!

Click the link below to see them both

http://groups.google.com/group/collectingfreebies/web/two-great-give-aways-usa

I hope this helps with your budgets!

Hi Kelsey,



I also know about the gas pain.  I spent my first day home after the
takedown just lying on the bed in pain due to the gas.  I then remembered
something I had read on this site and that was to lie down.  The first day
was the worst and it got better with each passing week.  When I went back to
work I found myself having to go to the stockroom to lay down.  Sometimes I
had to roll side to side to pass it and other times on my back.  I didn't
have much in the way of pain though so can't help you there.   I had 3
months between my surgeries so had more time to build up my strength than
you did.  Hang in there as it will get better.



Kevin



From: jpouchsupport@yahoogroups.com [mailto:jpouchsupport@yahoogroups.com]
On Behalf Of kelseyx007
Sent: Wednesday, November 18, 2009 3:56 PM
To: jpouchsupport@yahoogroups.com
Subject: [J-Pouch Support] Surgery Part 2, take down-- some questions





Hello All,

You guys were all so helpful on my last post regarding surgery so I thought
I would turn to you again.

I had my take down operation a week and a half ago- I only had my ileostomy
for a month due to complications. At this point, I'm still having severe
pain, especially in the morning. It quite literally takes my breath away.
I'm constantly waiting to take my next dose of painkillers and seem to only
have a few hours of relief each day. How long do all these pains continue
for? I have gas pain, surgical pain and muscle pain. I've been taking Pepsid
2x/day and Simethicone at max to help with the gas. For the surgical pain
I'm on prescriptions and for the muscle pain I'm taking prescription
strength Motrin, though I have a prescription for Valium- I'm just tired of
feeling doped up all the time. I've been taking morphine as well to help
with the pain in general (though it does nothing for those nasty muscle
cramps).

I know it obviously will take some time to heal, but at the moment I feel
that the pain is the same as it was in the hospital. I still need help
sitting up in bed, I had my dad install handles on my toilet for support,
everything is a CHORE. And that doesn't even start to cover the issues of
when I'm going to the bathroom and the weird pains I have then.

How long did it take for your pain (especially gas and muscle cramps) to go
away after your second surgery? I notice that I sometimes have a build up of
pressure behind where the ileostomy was and the pain will increase until the
muscle there uncramps or the gas bubble moves through.

And last but not least, does anyone have any remedies for fissures? I've
been using honey and aloe but it seems to be having minimal effect.

Thanks,
kelsey



No virus found in this incoming message.
Checked by AVG - www.avg.com
Version: 9.0.707 / Virus Database: 270.14.72/2511 - Release Date: 11/18/09
02:50:00



[Non-text portions of this message have been removed]

I can't help much Kelsey,


  But I CAN TELL YOU THE PAIN OF GAS/BUBBLE of air through the pouch WILL GO
AWAY!!! : ) IT took me about 7-8 months for it to completely heal in my case (I
had compliccations and two illeos).  Once it fully stopped in has never happened
like that "first pain" again. . . : )


I hope this helps!!  It helped me when I was told it "will go away" and it
finally did!  Good luck!!


  best jpouch healing thoughts~ Julie



-----Original Message-----
From: kelseyx007 <powderprincessluvssnow@...>
To: jpouchsupport@yahoogroups.com
Sent: Wed, Nov 18, 2009 12:56 pm
Subject: [J-Pouch Support] Surgery Part 2, take down-- some questions





Hello All,

You guys were all so helpful on my last post regarding surgery so I thought I
would turn to you again.

I had my take down operation a week and a half ago- I only had my ileostomy for
a month due to complications.  At this point, I'm still having severe pain,
especially in the morning.  It quite literally takes my breath away.  I'm
constantly waiting to take my next dose of painkillers and seem to only have a
few hours of relief each day.  How long do all these pains continue for?  I have
gas pain, surgical pain and muscle pain.  I've been taking Pepsid 2x/day and
Simethicone at max to help with the gas. For the surgical pain I'm on
prescriptions and for the muscle pain I'm taking prescription strength Motrin,
though I have a prescription for Valium- I'm just tired of feeling doped up all
the time.  I've been taking morphine as well to help with the pain in general
(though it does nothing for those nasty muscle cramps).

I know it obviously will take some time to heal, but at the moment I feel that
the pain is the same as it was in the hospital.  I still need help sitting up in
bed, I had my dad install handles on my toilet for support, everything is a
CHORE.  And that doesn't even start to cover the issues of when I'm going to the
bathroom and the weird pains I have then.

How long did it take for your pain (especially gas and muscle cramps) to go away
after your second surgery?  I notice that I sometimes have a build up of
pressure behind where the ileostomy was and the pain will  increase until the
muscle there uncramps or the gas bubble moves through.

And last but not least, does anyone have any remedies for fissures? I've been
using honey and aloe but it seems to be having minimal effect.

Thanks,
kelsey










[Non-text portions of this message have been removed]

Hello All,

You guys were all so helpful on my last post regarding surgery so I thought I
would turn to you again.

I had my take down operation a week and a half ago- I only had my ileostomy for
a month due to complications.  At this point, I'm still having severe pain,
especially in the morning.  It quite literally takes my breath away.  I'm
constantly waiting to take my next dose of painkillers and seem to only have a
few hours of relief each day.  How long do all these pains continue for?  I have
gas pain, surgical pain and muscle pain.  I've been taking Pepsid 2x/day and
Simethicone at max to help with the gas. For the surgical pain I'm on
prescriptions and for the muscle pain I'm taking prescription strength Motrin,
though I have a prescription for Valium- I'm just tired of feeling doped up all
the time.  I've been taking morphine as well to help with the pain in general
(though it does nothing for those nasty muscle cramps).

I know it obviously will take some time to heal, but at the moment I feel that
the pain is the same as it was in the hospital.  I still need help sitting up in
bed, I had my dad install handles on my toilet for support, everything is a
CHORE.  And that doesn't even start to cover the issues of when I'm going to the
bathroom and the weird pains I have then.

How long did it take for your pain (especially gas and muscle cramps) to go away
after your second surgery?  I notice that I sometimes have a build up of
pressure behind where the ileostomy was and the pain will  increase until the
muscle there uncramps or the gas bubble moves through.

And last but not least, does anyone have any remedies for fissures? I've been
using honey and aloe but it seems to be having minimal effect.

Thanks,
kelsey

I will be out of the office starting  11/16/2009 and will not return until
11/17/2009.

I will respond to your message when I return. If you should need assistance
with accounts payable please contact Maureen Eadie at 585-768-5108 or
e-mail meadie@...

Hello Everyone!

Here is a FRESH selection of stuff members can collect for nothing

There is lots to grab in this new Giveaway Mix!

http://groups.google.com/group/freebieshare/web/giveaway-mix-november-16

Enjoy!

Stress adversely affects ulcerative colitis with or with out colon.


--- On Sat, 11/14/09, heather DuBois <heatherd_71@...> wrote:


From: heather DuBois <heatherd_71@...>
Subject: Re: [J-Pouch Support] New to J pouch
To: jpouchsupport@yahoogroups.com
Date: Saturday, November 14, 2009, 4:38 AM


 



Hi. I'm sorry your having issues. I don't mean to make light of an aggravating
situation but I just wondered how stressful your lifestyle is. You stated you
are an engineer. Is it a possibility that outside stress factors are
contributing to your frequent visits to the restroom? I am a laboratory
technologist and sometimes when work gets stressful and harried along with my
homelife, there is just nothing that seems to help. My surgeon would like me to
find a less stressful job and truthfully, so would I but....I have to have that
money. So I figured if western medicine could not help me than I would try out
some alternative medicine. I've been focusing on preventative measures to keep
my health in check.
I do some meditation excercises daily. Quite honestly i am suprised at how much
it helps.
Of course there are days when I've been on call for 72 hours straight and
running on 2 hours of sleep and my pouch starts giving me grief but that's alot
for a healthy person to endure, let alone someone like myself. I also have
started getting a message once a month. Not a normal back message but a belly
one. It sure seems to help with my scar tissue and pain issues...and it's sooo
relaxing. Maybe you might want to consider trying something alternative. I mean
if it helps, what do you have to lose?
 
Good luck, I hope you get to feeling better.

--- On Fri, 11/13/09, mutenick@comcast. net <mutenick@comcast. net> wrote:

From: mutenick@comcast. net <mutenick@comcast. net>
Subject: Re: [J-Pouch Support] New to J pouch
To: jpouchsupport@ yahoogroups. com
Date: Friday, November 13, 2009, 11:08 AM

 

Hello,

l live in Niwot Colorado and have my pouch since 97 and am 65 yrs old. I would
consider myself a c or c- or level of success with the pouch. I work full time
as an engineer. currently I am having more problems than usual. Was having very
loose stools and 12 trips per day to the john. I took two weeks of Cipro and
flagyl together and this thickend the stool but not much help for the daily
trips to john. After 2 weeks stopped antibiotics and stools loose again within a
week. Started with just Flagyl (3x/day) for once week and have not tappered down
to 2/day. I also took the suggestion of using Psylium (spelling ??) powder
2x.day. this really thickens the stool. I have semi formed stools but still make
12 trips/day to john. the Phylium does not disolve in water so you must stir it
a lot and then drink it. I decided to let the powder sit in the water for a few
minutes and then drink it. to my surprise the powder absorbed all the water and
was like a thick
jell and it was not drinkable at that point. For now I am going to lower my dose
and see what happens. Will also try smaller amounts maybe 3x/day.

How long has it been since the takedown? Have you gotten Ernie's list of food
that thicken the stool and items that help with skin card. For me I use vaseline
constant care cream (vccc)applied to tp to wipe when I am a work and then put
additional vccc on tp and place between my butt cheeks and leave it there in
case of any leakage. I also wear a woman's think mini pad in my shorts. Also
this may sound depressing at and first it is but this is what life has dealt me
and I find I can manage just fine. From all the work that I do and home repairs
and building a large deck my neighbor never knew I had a pouch. He only knew
aftet I told him when he told me he was having the pouch done. Hey, what are the
chances of two neighbors both having pouches? One last thing I baby wipes to
clean myself at home and when there is butt burn calmospetine cream ( it does
wonders). You will find this a great site. Not sure about the stoma pain. If not
too long since surgery
probably normal. At 6 months post op I still didn't care if I loved or died. Now
I want to live. So hang it there and time will make it better. If you want to
talk or meet I would be happy to help in any way I can.

God Bless,mike u
----- Original Message -----

From: mauriroseclatham

To: jpouchsupport@ yahoogroups. com

Sent: Fri, 13 Nov 2009 04:25:08 +0000 (UTC)

Subject: [J-Pouch Support] New to J pouch

I recently had my take down surgery. I'm having a hard time finding foods that
thicken my stool. Any suggestions? I'm also having slight pain above the ostomy
site. Did anyone else have that? I'm also looking for suggestions for frequency
during the night and burning around the outside (due to frequency). Is anyone
here from around the Denver area? Thanks!

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Hi. I'm sorry your having issues. I don't mean to make light of an aggravating
situation but I just wondered how stressful your lifestyle is. You stated you
are an engineer. Is it a possibility that outside stress factors are
contributing to your frequent visits to the restroom? I am a laboratory
technologist and sometimes when work gets stressful and harried along with my
homelife, there is just nothing that seems to help. My surgeon would like me to
find a less stressful job and truthfully, so would I but....I have to have that
money. So I figured if western medicine could not help me than I would try out
some alternative medicine. I've been focusing on preventative measures to keep
my health in check.
I do some meditation excercises daily. Quite honestly i am suprised at how much
it helps.
Of course there are days when I've been on call for 72 hours straight and
running on 2 hours of sleep and my pouch starts giving me grief but that's alot
for a healthy person to endure, let alone someone like myself. I also have
started getting a message once a month. Not a normal back message but a belly
one. It sure seems to help with my scar tissue and pain issues...and it's sooo
relaxing. Maybe you might want to consider trying something alternative. I mean
if it helps, what do you have to lose?
 
Good luck, I hope you get to feeling better.


--- On Fri, 11/13/09, mutenick@... <mutenick@...> wrote:


From: mutenick@... <mutenick@...>
Subject: Re: [J-Pouch Support] New to J pouch
To: jpouchsupport@yahoogroups.com
Date: Friday, November 13, 2009, 11:08 AM


 



Hello,

l live in Niwot Colorado and have my pouch since 97 and am 65 yrs old. I would
consider myself a c or c- or level of success with the pouch. I work full time
as an engineer. currently I am having more problems than usual. Was having very
loose stools and 12 trips per day to the john. I took two weeks of Cipro and
flagyl together and this thickend the stool but not much help for the daily
trips to john. After 2 weeks stopped antibiotics and stools loose again within a
week. Started with just Flagyl (3x/day) for once week and have not tappered down
to 2/day. I also took the suggestion of using Psylium (spelling ??) powder
2x.day. this really thickens the stool. I have semi formed stools but still make
12 trips/day to john. the Phylium does not disolve in water so you must stir it
a lot and then drink it. I decided to let the powder sit in the water for a few
minutes and then drink it. to my surprise the powder absorbed all the water and
was like a thick
  jell and it was not drinkable at that point. For now I am going to lower my
dose and see what happens. Will also try smaller amounts maybe 3x/day.

How long has it been since the takedown? Have you gotten Ernie's list of food
that thicken the stool and items that help with skin card. For me I use vaseline
constant care cream (vccc)applied to tp to wipe when I am a work and then put
additional vccc on tp and place between my butt cheeks and leave it there in
case of any leakage. I also wear a woman's think mini pad in my shorts. Also
this may sound depressing at and first it is but this is what life has dealt me
and I find I can manage just fine. From all the work that I do and home repairs
and building a large deck my neighbor never knew I had a pouch. He only knew
aftet I told him when he told me he was having the pouch done. Hey, what are the
chances of two neighbors both having pouches? One last thing I baby wipes to
clean myself at home and when there is butt burn calmospetine cream ( it does
wonders). You will find this a great site. Not sure about the stoma pain. If not
too long since surgery
  probably normal. At 6 months post op I still didn't care if I loved or died.
Now I want to live. So hang it there and time will make it better. If you want
to talk or meet I would be happy to help in any way I can.

God Bless,mike u
----- Original Message -----

From: mauriroseclatham

To: jpouchsupport@ yahoogroups. com

Sent: Fri, 13 Nov 2009 04:25:08 +0000 (UTC)

Subject: [J-Pouch Support] New to J pouch

I recently had my take down surgery. I'm having a hard time finding foods that
thicken my stool. Any suggestions? I'm also having slight pain above the ostomy
site. Did anyone else have that? I'm also looking for suggestions for frequency
during the night and burning around the outside (due to frequency). Is anyone
here from around the Denver area? Thanks!

[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Hi. I had some pain around the ostomy site for awhile after my takedown. I think
it just comes with the territory. Have you ever heard that saying about how "
things get worse before they get better"? It's kind of on those lines.
I was told to eat marshmellows and peanut butter to thicken my stools. It seemed
to work for me. Ultimately though, it just took time for everything to heal and
my new system to get adjusted.
As far as the burning I personally think that Desitin they use for diaper rash
is the whip! lol.
There are alot of other things that can be helpful but this is just what works
for me.
 
Take care and hang in there, your in the home stretch now.
--- On Thu, 11/12/09, mauriroseclatham <mauriroseclatham@...> wrote:


From: mauriroseclatham <mauriroseclatham@...>
Subject: [J-Pouch Support] New to J pouch
To: jpouchsupport@yahoogroups.com
Date: Thursday, November 12, 2009, 11:25 PM


 



I recently had my take down surgery. I'm having a hard time finding foods that
thicken my stool. Any suggestions? I'm also having slight pain above the ostomy
site. Did anyone else have that? I'm also looking for suggestions for frequency
during the night and burning around the outside (due to frequency). Is anyone
here from around the Denver area? Thanks!











[Non-text portions of this message have been removed]

Hello,
First, welcome to this great list.  As I reply I notice that several others
have already replied with some great helps.
I also had trouble in the early months; for me they lasted far too long but
there is light.
Some simple "good" foods are soft cooked rice, bananas, applesauce, not
spiced, winter squash, cooked carrots and yams/sweet potatoes.  There are
more of course.  For me I have trouble with roughage like any raw vegetable
and also tomato of almost any kind or mix and spices.  Things that bother
can and probably will change as your body heals.  Remember, the small bowel
from which your pouch is made of is used to being able to move its contents
along continually, dumping this into the large bowel/colon.  Now it finds a
blockage, the sphincter.  Your body has to readjust and heal and this is
part in the jpouch beginning to act more like the colon.
I have pasted below a list of helps.  Many of these you will not need but I
hope some will bless you.  Also, remember, this is not a complete list for
new helps are continually coming up.
Blessings.  I am way out west from you in WA.
Ernie
Skin Barriers
"My Invisible Gloves" a wonderful barrier cream is used by some with Jpouchs
calmoseptine
   Burn Jell with 2 % Lidocaine.
Aloe Vista
Desitin
A&D cream with Aloe
Lantiseptic
Lidocaine  5 percent ointment to stop pain.
Butt Paste
baineol lotion for burning
Analpram for more serious stinging inside.  This used for one to 2 weeks
does much for healing the bowel/pouch after severe irritation.
Anusol HCL a cheaper geneic like Analpram.
Rectajel hc  used for burning/scalding pain in the Anal Canal.  Similar to
Anusol but with 2 & 1/2 percent Lidocain added.
Nystatin & Triamcinolone   Acetonide  is a great cream for healing sore
butts, not expensive either but is an RX.  Used for fungal problems.
Triple  paste  Very good.
  Try a cream from sween, called "critic-aid skin paste,  Heals fast for
some.
Vaseline petroleum also helps irritated skin.
  Some people have an allergy to lanolin, which is found in some
ointments/creams.  Read the label of all skin barriers you use.
Gold Bon  powder is also great for any kind of diaper rash.  This powder
does much in healing sore, scalded bottoms and heals while keeping the
bottom dry.
Some have found great help with using Slippery Elm  powder in water and used
as an enema finding it really helps in decreasing or stopping pouchitis.
Another uses Slippery Elm capsules with good success.
Other medications usually given for pouchitis or severe burning.
Cipro
Flagel
Both antibiotics.
One person have the most success for the rectal irritation using a
suppository
that her pharmacist has to make with Metronidazole (flagyl). They are 500
mg.
suppositories, have to be refrigerated, but they work for her.  Might help
others who can not take Flagel by mouth.

foods that are usually okay
Bananas are about the best food.
Tapioca, Cornmeal, Applesauce, not spiced,  Marshmallows, Pretzels
white Rice, Jell-O,  gelatin, Pasta, Potatoes without skin, Boiled milk,
Peanut butter (smooth)
Cheese, oatmeal, cooked carrots,winter squash, yams/sweet tators.
Baked Snack foods are better than deep fried.  The finer one chews his
foods, especially hard crunchy foods like snack foods, the better it is.
When not chewed well, some can scratch the inner lining of the bowel.  Baked
snack foods help absorb the fluid in the bowel where as the deep fried does
not help as much.
Papaya, Mango,
Doritos, not spiced but like the cheesy ones, chewed well help also.  Many
can enjoy this snack with good benefits.  But try carefully for some of us
can not eat this.
Rice chips made by Lundberg Family Farms is a snack that may be good
for you.  Several flavors & taste good.  Found in most health food stores.
Try the low acid tomatoes.  May not bother as much as the other tomatoes.
Most do quite well on meat but spicy meat may cause a problem.  Like other
foods, try a little to see its reaction.

Foods that may cause burning & more diarrhea

all tomato sauces, spices, chocolate, nuts, raw vegetables
Alcoholic drinks, orange, lemon, grapefruit, whole or juice
Remember, this may change as the body adjusts!  After  you begin to feel
that you are doing fine, try one questionable food at a time & see how it
goes.  Very likely you can get by with a small amount but may have trouble
if you over do on it.
Some toilet paper may cause skin soreness.  Avoid color toilet paper.


Helpful aids!
Some people get help by taking a medication that binds up the bile, thus
stopping the burning in the bowel.  Not for everyone but for some this is a
real relief
One such medication is called Welchol,  Another is Prevalite or questrin.
Probiotic helps some Jpouchers  control diarrhea.  Live bacteria to keep
bowel more healthy.
VSL3  1 866 438 8753  Must be refrigerated, comes in individual packet to
mix in water/juice.  Quite expensive.

R Garden  1 800 800 1927  Probiotica medication information  1 800  406 7431
Intergarden flora, Has the same live bacteria as VSL3 but 3 more types.
Must be kept in the refrigerator.  Comes in capsule form.
Probiotics can be kept for a few weeks out of the refrigerator if in a
position where no refrigerator exists.  Store in the coolest place.  The
product will lose some of its viability but over several weeks it only loses
about  five percent when left  for 4 weeks.
(Newton-Timmermann Pharmacy)   http://www.newtimrx.com  for Flora Q
probiotic  Capsule form, no refrigeration needed.

Custom Probitics Inc. 3000 Honolulu Avenue  Unit #4
Glendale, CA 91214    Toll Free(800)219-8405
Local(818)248-3529   Weblink-http://www.customprobiotics.com/index.htm
Fax (81)248-6343
e-mail  info@...

Cascade Fresh Cascaders has a yogurt drink with 8 live cultures in it.
www.cascadefresh.com

Amitriptylin  10 mg!  1 to 3 pills at bedtime
If you are bothered by bowel blockages you may want to try this.  take 5
tablespoons of olive oil in a small glass and shoot it down. It tastes
disgusting but, it's much better than the painful suffering of a blockage.
This works fine for some.

Tylenol 3,(codeine)
Lomotil
Imodium
Imodium with gas control!
Smart water,   may find in local health food stores.  Electrolyte drink,
tastes like water, no sodium
Gatorade

Vitalite    Phone 1 800 426 4840  (REI)
Recreational Equipment inc.
   Is another electrolyte drink with
lower sugar  in it.

Try some of the high energy bars made for athletes or Ensure/Boost drinks
Charcoal tablets/capsules may help greatly to relieve gas discomfort/pain.
Take several hours either before or after taking any other medication as the
charcoal may latch on the medication, making it not as strong as it should
be.  But taken otherwise can do a lot to stop gas pain!
whey protein supplement may help build strength in the early post surgery
months.  Can be mixed in milk/juice or other..
Phazyme is an over-the-counter pill that greatly reduces gas without
side-effects, may want to try this one.
Do you want to know if your vitamin supplements are helping you?  Place the
supplement in a glass of water.  If dissolved or almost dissolved in 1/2
hour, there is a great chance your body will utilize this supplement.  If
after 1/2 hour the tablet is still whole of mostly whole, it will not do you
any good, or very little good.  You may also use this on Rx medication.  If
you feel the medication is passing through & not helping you, speak to your
doctor!
One may now find chewy Gummy Vitamins and may find these easier to take.
Might want to take with some food.
Helpful hints for changing the ostomy bag & for skin irritations under the
appliance.
Always clean the skin surface thoroughly!
To give more time with less chance for leakage,  eat 2 or 3 large
marshmallows about 15 minutes before changing the appliance.  This acts to
form a temporary bowel block, allowing a few more minutes to change the bag.
   If one has a choice, it is best to change the appliance in the morning,
after a night without food & before eating breakfast.
For skin scalding:
Get a bottle of Milk Of Magnesia.  Let set to allow separation.  Pour off &
discard the mostly clear liquid.  After the skin surface is cleaned, take a
cotton ball & dip in some of the thicker Milk of Magnesia,  (MOM) & gently
dab over all the area that is scalded & or is under the appliance.  Let
dry.  To speed drying, gently fan with a card, paper or fan.
After this is dry, only a minute or two, apply the stoma adhesive & the
appliance as per instructions.
If you are having to change the whole bag appliance more often than every  5
to 7
days, or if you are getting leakage either out of the bag or under, causing
scalding, check with your stoma nurse or doctor.  It may be another type of
appliance will work better for you.  Also, if you are getting scalding
around the stoma but still the appliance holds well, it may be the hole has
been cut too large allowing secretion to touch the tender skin surface.  The
appliance needs to fit snugly around the stoma.

If wearing the iliostomy bag bothers you, there are a few things you can do.
I found the cargo pants, with the baggy crotch very useful.  I could pull
the waist of these pants clear up to my rib cage, thus completely covering
the bag while still not putting any pressure on the bag or on the appliance.
I used suspenders to hold the pants up high!  I then wore my shirt on the
outside.  Anyone looking at me only saw me in a pair of slacks with my shirt
on the outside, thus nothing unusual.  It was a little more of a bother when
I needed the toilet though, but still worth it.
I also found sweat pants easy to wear because usually I could bring them up
over the appliance.  For me, I could not wear my jeans or slacks because
either the belt would push up under the appliance, putting pressure on the
appliance to dislodge it or the belt went right over the bag, thus making a
restriction in its flow into the bag.

One can buy some colorful, soft flannel & make covering pouches for the bag.
This is especially nice when  being more intimate, where the bag really may
interfere with ones  relationships!
I also would wear this cover if I was up and about & it was possible that
the bag might be seen.



To help control or stop watery diarrhea
Metamucil either the type to mix & drink or in wafers help some people to
control the diarrhea.  This may also cause more bulk to get rid of & may
cause more gas in some people.
Over the counter Imodium helps some with diarrhea
Lomotil a prescription similar to Imodium but stronger.
Codeine to help diarrhea but use care not to end up taking too much Tylenol
over a long time: may cause liver damage.  But doctors say taking up to 4
Tylenol with codeine per day will not cause any harm.
xifaxin. has helped some to get over pouchitis , to firm up the stools & to
reduce the number of toilet trips.
put about 10 drops of denatured tincture of opium  in about a 1/4 cup of
water and just chug it.  This for some, helps control diarrhea with no use
of codeine

Dehydration & low electrolytes are common & need to be avoided.  One needs
at least 6  to 8 glasses of water/juice daily, even when the stool is
diarrhea.
  Dehydration or an imbalance of electrolytes may cause weakness & also
nausea & vomiting

Try these panty liners to place in your under pants/briefs.  They absorb
leakage, can be changed with ease & do not cost that much.  For some, a
cotton ball pressed up in the crack, but not in so it will hold the spinctor
open, helps.  Sometimes just keeping a couple squares of toilet paper inside
your briefs/under pants helps & this can be discarded with every toilet
trip.

It is good to practice strengthening the anal spinctor muscle.  Work at this
several times a day but allow a rest after a few minutes of exercise.

----- Original Message -----
From: "mauriroseclatham" <mauriroseclatham@...>
To: <jpouchsupport@yahoogroups.com>
Sent: Thursday, November 12, 2009 8:25 PM
Subject: [J-Pouch Support] New to J pouch


I recently had my take down surgery. I'm having a hard time finding foods
that thicken my stool. Any suggestions? I'm also having slight pain above
the ostomy site. Did anyone else have that? I'm also looking for suggestions
for frequency during the night and burning around the outside (due to
frequency). Is anyone here from around the Denver area? Thanks!

Hereis a dated "Earnies List". . Has been updated

Skin Barriers
calmoseptine
Burn Jell with 2 % Lidocaine.
Aloe Vista
Desitin
A&D cream with Aloe
Lantiseptic
Lidocaine 5 percent ointment to stop pain. need prescription
Butt Paste
baineol lotion for burning
Analpram for more serious stinging inside. This used for one to 2 weeks
does much for healing the bowel/pouch after severe irritation. Needs
prescription
Anusol HCL a cheaper generic like Analpram.
Rectajel hc used for burning/scalding pain in the Anal Canal. Similar to
Anusol but with 2 & 1/2 percent Lidocain added. Needs prescription
Nystatin & Triamcinolone Acetonide is a great cream for healing sore
butts. Needs prescription
Butt Triple paste Very good.
Try a cream from sween, called "critic-aid skin paste, Heals fast for
some.
Vaseline petroleum also helps irritated skin.
Some people have an allergy to lanolin, which is found in some
ointments/creams. Read the label of all skin barriers you use.

Other medications usually given for pouchitis or severe burning.
Cipro
Flagel
Both antibiotics.
One person have the most success for the rectal irritation using a
suppository
that her pharmacist has to make with Metronidazole (flagyl). They are 500
mg.
suppositories, have to be refrigerated, but they work for her. Might help
others who can not take Flagel by mouth.

foods that are usually okay
Bananas are about the best food.
Tapioca, Cornmeal, Applesauce, not spiced, Marshmallows, Pretzels
white Rice, Jell-O, gelatin, Pasta, Potatoes without skin, Boiled milk,
Peanut butter (smooth)
Cheese, oatmeal, cooked carrots,winter squash, yams/sweet tators.
Baked Snack foods are better than deep fried. The finer one chews his
foods, especially hard crunchy foods like snack foods, the better it is.
When not chewed well, some can scratch the inner lining of the bowel. Baked
snack foods help absorb the fluid in the bowel where as the deep fried does
not help as much.
Papaya, Mango,
Doritos, not spiced but like the cheesy ones, chewed well help also. Many
can enjoy this snack with good benefits. But try carefully for some of us
can not eat this.
Rice chips made by Lundberg Family Farms is a snack that may be good
for you. Several flavors & taste good. Found in most health food stores.
Try the low acid tomatoes. May not bother as much as the other tomatoes.
Remember, we are all different so some foods may not react well for one
person but do fine with another.

Foods that may cause burning & more diarrhea

all tomato sauces, spices, chocolate, nuts, raw vegetables
Alcoholic drinks, orange, lemon, grapefruit, whole or juice
Remember, this may change as the body adjusts! After you begin to feel
that you are doing fine, try one questionable food at a time & see how it
goes. Very likely you can get by with a small amount but may have trouble
if you over do on it.
Some toilet paper may cause skin soreness. Avoid color toilet paper.

Helpful aids!
Some people get help by taking a medication that binds up the bile, thus
stopping the burning in the bowel. Not for everyone but for some this is a
real relief
One such medication is called Welchol, Another is Prevalite or questrin.
prescription needed
Probiotic helps some Jpouchers control diarrhea. Live bacteria to keep
bowel more healthy.
VSL3 1 866 438 8753 Must be refrigerated, comes in individual packet to
mix in water/juice. Quite expensive.

R Garden 1 800 800 1927 Probiotica medication information 1 800 406 7431
Intergarden flora, Has the same live bacteria as VSL3 but 3 more types.
Must be kept in the refrigerator. Comes in capsule form.
Probiotics can be kept for a few weeks out of the refrigerator if in a
position where no refrigerator exists. Store in the coolest place. The
product will lose some of its viability but over several weeks it only loses
about five percent when left for 4 weeks.
(Newton-Timmermann Pharmacy) http://www.newtimrx.com for Flora Q
probiotic Capsule form, no refrigeration needed.

Custom Probitics Inc. 3000 Honolulu Avenue Unit #4
Glendale, CA 91214 Toll Free(800)219-8405
Local(818)248-3529 Weblink-http://www.customprobiotics.com/index.htm
Fax (81)248-6343
e-mail info@...

Cascade Fresh Cascaders has a yogurt drink with 8 live cultures in it.
www.cascadefresh.com

Amitriptylin 10 mg! 1 to 3 pills at bedtime
If you are bothered by bowel blockages you may want to try this. take 5
tablespoons of olive oil in a small glass and shoot it down. It tastes
disgusting but, it's much better than the painful suffering of a blockage.
This works fine for some.

Tylenol 3,(codeine)
Lomotil
Imodium
Imodium with gas control
Smart water, may find in local health food stores. Electrolyte drink,
tastes like water, no sodium
Gatorade

Gookinaid Hydrolyte www.gookinaid.com Phone 1 800 426 4840 (REI)
Recreational Equipment inc.
Is another electrolyte drink with
lower sugar in it. Now it is called Vitalite.

Try some of the high energy bars made for athletes or Ensure/Boost drinks
Charcoal tablets/capsules may help greatly to relieve gas discomfort/pain.
Take several hours either before or after taking any other medication as the
charcoal may latch on the medication, making it not as strong as it should
be. But taken otherwise can do a lot to stop gas pain!
whey protein supplement may help build strength in the early post surgery
months. Can be mixed in milk/juice or other..
Phazyme is an over-the-counter pill that greatly reduces gas without
side-effects, may want to try this one.
Do you want to know if your vitamin supplements are helping you? Place the
supplement in a glass of water. If dissolved or almost dissolved in 1/2
hour, there is a great chance your body will utilize this supplement. If
after 1/2 hour the tablet is still whole of mostly whole, it will not do you
any good, or very little good. You may also use this on Rx medication. If
you feel the medication is passing through & not helping you, speak to your
doctor

Helpful hints for changing the ostomy bag & for skin irritations under the
appliance.
Always clean the skin surface thoroughly
To give more time with less chance for leakage, eat 2 or 3 large
marshmallows about 15 minutes before changing the appliance. This acts to
form a temporary bowel block, allowing a few more minutes to change the bag.
If one has a choice, it is best to change the appliance in the morning,
after a night without food & before eating breakfast.
For skin scalding:
Get a bottle of Milk Of Magnesia. Let set to allow separation. Pour off &
discard the mostly clear liquid. After the skin surface is cleaned, take a
cotton ball & dip in some of the thicker Milk of Magnesia, (MOM) & gently
dab over all the area that is scalded & or is under the appliance. Let
dry. To speed drying, gently fan with a card, paper or fan.
After this is dry, only a minute or two, apply the stoma adhesive & the
appliance as per instructions.
If you are having to change the whole bag appliance more often than every 5
to 7
days, or if you are getting leakage either out of the bag or under, causing
scalding, check with your stoma nurse or doctor. It may be another type of
appliance will work better for you. Also, if you are getting scalding
around the stoma but still the appliance holds well, it may be the hole has
been cut too large allowing secretion to touch the tender skin surface. The
appliance needs to fit snugly around the stoma.

If wearing the iliostomy bag bothers you, there are a few things you can do.
I found the cargo pants, with the baggy crotch very useful. I could pull
the waist of these pants clear up to my rib cage, thus completely covering
the bag while still not putting any pressure on the bag or on the appliance.
I used suspenders to hold the pants up high! I then wore my shirt on the
outside. Anyone looking at me only saw me in a pair of slacks with my shirt
on the outside, thus nothing unusual. It was a little more of a bother when
I needed the toilet though, but still worth it.
I also found sweat pants easy to wear because usually I could bring them up
over the appliance. For me, I could not wear my jeans or slacks because
either the belt would push up under the appliance, putting pressure on the
appliance to dislodge it or the belt went right over the bag, thus making a
restriction in its flow into the bag.

One can buy some colorful, soft flannel & make covering pouches for the bag.
This is especially nice when being more intimate, where the bag really may
interfere with ones relationships!
I also would wear this cover if I was up and about & it was possible that
the bag might be seen.

To help control or stop watery diarrhea
Metamucil either the type to mix & drink or in wafers help some people to
control the diarrhea. This may also cause more bulk to get rid of & may
cause more gas in some people.
Over the counter Imodium helps some with diarrhea
Lomotil a prescription similar to Imodium but stronger.
Codeine to help diarrhea but use care not to end up taking too much Tylenol
over a long time: may cause liver damage. But doctors say taking up to 4
Tylenol with codeine per day will not cause any harm.
xifaxin. has helped some to get over pouchitis , to firm up the stools & to
reduce the number of toilet trips.
put about 10 drops of denatured tincture of opium in about a 1/4 cup of
water and just chug it. This for some, helps control diarrhea with no use
of codeine

Dehydration & low electrolytes are common & need to be avoided. One needs
at least 6 to 8 glasses of water/juice daily, even when the stool is
diarrhea.
Dehydration or an imbalance of electrolytes may cause weakness & also
nausea & vomiting

Try these panty liners to place in your under pants/briefs. They absorb
leakage, can be changed with ease & do not cost that much. For some, a
cotton ball pressed up in the crack, but not in so it will hold the spinctor
open, helps. Sometimes just keeping a couple squares of toilet paper inside
your briefs/under pants helps & this can be discarded with every toilet
trip.

It is good to practice strengthening the anal spinctor muscle. Work at this
several times a day but allow a rest after a few minutes of exercise.



----- Original Message -----
From: "mauriroseclatham" <mauriroseclatham@...>
To: jpouchsupport@yahoogroups.com
Sent: Thursday, November 12, 2009 10:25:08 PM GMT -06:00 US/Canada Central
Subject: [J-Pouch Support] New to J pouch

 




I recently had my take down surgery. I'm having a hard time finding foods that
thicken my stool. Any suggestions? I'm also having slight pain above the ostomy
site. Did anyone else have that? I'm also looking for suggestions for frequency
during the night and burning around the outside (due to frequency). Is anyone
here from around the Denver area? Thanks!




[Non-text portions of this message have been removed]

Hang in there. Earnie Jones will send "Earnie's List of foods to get you
through the early times and the list also has creams/salves that will help with
the butt burn. It saved my butt (pun intended). Briefly go to wallgreens and get
some calmoseptine. Apply to perianal area after wipe it calms and cools the butt
burn. I also used nupercainanal it works well. As far as the frequency.. Watch
what you eat and start taking metamucel in morning and evening also get some
generic immodium (otc) take in morning/evening and prior to going to sleep





Rob
----- Original Message -----
From: "mauriroseclatham" <mauriroseclatham@...>
To: jpouchsupport@yahoogroups.com
Sent: Thursday, November 12, 2009 10:25:08 PM GMT -06:00 US/Canada Central
Subject: [J-Pouch Support] New to J pouch

 




I recently had my take down surgery. I'm having a hard time finding foods that
thicken my stool. Any suggestions? I'm also having slight pain above the ostomy
site. Did anyone else have that? I'm also looking for suggestions for frequency
during the night and burning around the outside (due to frequency). Is anyone
here from around the Denver area? Thanks!




[Non-text portions of this message have been removed]

Hello,

  l live in Niwot Colorado and have my pouch since 97 and am 65 yrs old. I would
consider myself a c or c- or level of success with the pouch. I work full time
as an engineer. currently I am having more problems than usual. Was having very
loose stools and 12 trips per day to the john. I took two weeks of Cipro and
flagyl together and this thickend the stool but not much help for the daily
trips to john. After 2 weeks stopped antibiotics and stools loose again within a
week. Started with just Flagyl (3x/day) for once week and have not tappered down
to 2/day. I also took the suggestion of using Psylium (spelling ??) powder
2x.day. this really thickens the stool. I have semi formed stools but still make
12 trips/day to john. the Phylium does not disolve in water so you must stir it
a lot and then drink it. I decided to let the powder sit in the water for a few
minutes and then drink it. to my surprise the powder absorbed all the water and
was like a thick jell and it was not drinkable at that point. For now I am going
to lower my dose and see what happens. Will also try smaller amounts maybe
3x/day.

How long has it been since the takedown? Have you gotten Ernie's list of food
that thicken the stool and items that help with skin card. For me I use vaseline
constant care cream (vccc)applied to tp to wipe when I am a work and then put
additional vccc on tp and place between my butt cheeks and leave it there in
case of any leakage. I also wear a woman's think mini pad in my shorts. Also
this may sound depressing at and first it is but this is what life has dealt me
and I find I can manage just fine. From all the work that I do and home repairs 
and building a large deck my neighbor never knew I had a pouch. He only knew
aftet I told him when he told me he was having the pouch done. Hey, what are the
chances of two neighbors both having pouches? One last thing I baby wipes to
clean myself at home and when there is butt burn calmospetine cream ( it does
wonders). You will find this a great site. Not sure about the stoma pain. If not
too long since surgery probably normal. At 6 months post op I still didn't care
if I loved or died. Now I want to live. So hang it there and time will make it
better. If you want to talk or meet I would be happy to help in any way I can.

God Bless,mike u
----- Original Message -----

From: mauriroseclatham

To: jpouchsupport@yahoogroups.com

Sent: Fri, 13 Nov 2009 04:25:08 +0000 (UTC)

Subject: [J-Pouch Support] New to J pouch

























































I recently had my take down surgery. I'm having a hard time finding foods that
thicken my stool. Any suggestions? I'm also having slight pain above the ostomy
site. Did anyone else have that? I'm also looking for suggestions for frequency
during the night and burning around the outside (due to frequency). Is anyone
here from around the Denver area? Thanks!

















































[Non-text portions of this message have been removed]

I recently had my take down surgery. I'm having a hard time finding foods that
thicken my stool. Any suggestions? I'm also having slight pain above the ostomy
site. Did anyone else have that? I'm also looking for suggestions for frequency
during the night and burning around the outside (due to frequency). Is anyone
here from around the Denver area? Thanks!

You're welcome Frank



From: jpouchsupport@yahoogroups.com [mailto:jpouchsupport@yahoogroups.com]
On Behalf Of FRANK MC MAHON
Sent: Wednesday, November 11, 2009 3:45 PM
To: jpouchsupport@yahoogroups.com
Subject: [J-Pouch Support] RE:





Thanks Kevin....Frank Mc Mahon

[Non-text portions of this message have been removed]



No virus found in this incoming message.
Checked by AVG - www.avg.com
Version: 9.0.704 / Virus Database: 270.14.60/2496 - Release Date: 11/11/09
02:40:00



[Non-text portions of this message have been removed]

Thanks Kevin....Frank Mc Mahon

[Non-text portions of this message have been removed]

I have just banned amandafensworth from our group!



Kevin



From: jpouchsupport@yahoogroups.com [mailto:jpouchsupport@yahoogroups.com]
On Behalf Of Ernest Jones
Sent: Wednesday, November 11, 2009 3:16 PM
To: j-pouch support
Subject: [J-Pouch Support] unwanted messages.





Hello
We are getting more of these messages talking about notifying our group
moderator and she......
These are spam and we are working to get rid of them. Please bear with us
and hopefully soon they will be gone. They are not from our moderator but
are spam.
Thank you for your support and patience.
Ernie



No virus found in this incoming message.
Checked by AVG - www.avg.com
Version: 9.0.704 / Virus Database: 270.14.60/2496 - Release Date: 11/11/09
02:40:00



[Non-text portions of this message have been removed]

Hello
We are getting more of these messages talking about notifying our group
moderator and she......
These are spam and we are working to get rid of them.  Please bear with us
and hopefully soon they will be gone.  They are not from our moderator but
are spam.
Thank you for your support and patience.
Ernie