Hello Jennie,
What is your husband taking to stop the diarrhea?  Many of us need to take
drugs to stop diarrhea; continual diarrhea greatly decreases the needed
electrolytes in our body and causes dehydration.  Each person is different
but I, along with some others take Codeine, either plain or with Tylenol
along with Lomotil with good success.  The natural fiber mix, Metamucil and
its generic also help a lot.
I also drink  Vitalyte by Gookinaid E.R.G.
1 800 283 6505
Vitalyte.com
This is sort of like gatorade but does not have the high sugar content.
Comes in 6 flavors I think and is a great electrolyte drink.
I can understand your frustration as I also had a lot of trouble.  I had an
emergency surgery with another iliostomy only one week after my first take
down and fought abdominal abscess for a year until I could again have the
take down.  But there was more after that too.  Fortunately most do not have
the trouble your husband and some of us had.
Check diet.  Spices of almost all kinds, most tomato and tomato sauces are a
NO NO as may be many raw vegetables and such.  Bananas are a good form of
potassium and are usually constipating too so very good for us.
I am going to paste below a list that has been set up.  This is not all
conclusive but has a lot; just ignore the part about what you do not need.
I also know you will hear from others.  Unfortunately most doctors really
don't have all the knowledge concerning the Jpouch but some are very good.
I hope this will help you and I hope he finds much help.
I am sorry about all the problems your husband is having.
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: "jeff_da_cheff" <no_reply@yahoogroups.com>
To: <jpouchsupport@yahoogroups.com>
Sent: Wednesday, December 02, 2009 5:37 PM
Subject: [J-Pouch Support] J-Pouch and Chronic Dehydration-HELP!!!


Anyone who might be able to help,
My husband had his colon removed 2 years ago, and had the ostomy let-down
and j-pouch construction 1 year ago (plus many, many other
complications...just about everything you can imagine). He has been
struggling with dehydration and maintaining potassium levels ever since. I
hate to say it, but doctors have pretty much given up on a solution and he
is just getting IV infusions (which is not a perminent fix...just a
band-aid). Has anyone ever experienced this? If so, any suggestions you
might have (medications, diet, doctors, specialists) would help out so much.
Desperately,
Jenny

Anyone who might be able to help,
My husband had his colon removed 2 years ago, and had the ostomy let-down and
j-pouch construction 1 year ago (plus many, many other complications...just
about everything you can imagine). He has been struggling with dehydration and
maintaining potassium levels ever since. I hate to say it, but doctors have
pretty much given up on a solution and he is just getting IV infusions (which is
not a perminent fix...just a band-aid). Has anyone ever experienced this? If so,
any suggestions you might have (medications, diet, doctors, specialists) would
help out so much.
Desperately,
Jenny

We have been to the Cleveland Clinic many times this year.  Have met Dr. Shen,
we really liked him.  He is VERY experienced with IBD and the such.  We can give
you several recommendations regarding lodging.  I'll give a brief one here but
feel free to contact me at my personal email if we can be of further assistance
- gwayneo2@...<mailto:gwayneo2@...>

Everyone has different tastes etc but here is a flavor of your choices.

There are 3 places you can stay on the campus of the Cleveland Clinic.  You can
get descriptions here:
http://my.clevelandclinic.org/patients/accommodations/lodging.aspx

We have not stayed at any of these three but I have been through them all as we
have been to the Clinic so many times this year.  The guesthouse is kind of
geared towards people who are staying extended periods of time but is available
to anyone.  It is the least luxurious of the 3 but I would have no problem
staying there.  Seemed clean and safe.  It is around $110/night.  The other 2
are much more expensive with the Intercontinental Hotel the most (i.e.
>$200/night) but the most convenient.  It is actually connected to the hospital
by the "skyway" so you would not even have to go outside to get to Dr. Shen's
office as he is in the Crile Bldg (A), 3rd floor.

We actually stayed at a Comfort Inn (Downtown, on Euclid Ave - same as the
Clinic) the 1st time we went as we tried to save money but still be close to the
Clinic as we were concerned about traffic etc., which was unfounded (of course
we are not used to big city driving)  It was relatively nice with free breakfast
(around $90/night).  My wife liked it and is very picky.  Where we stay now and
love is just outside of town in Independence, OH.  It is about a 15 minute drive
to the Clinic, less if not during rush hour (although we give ourselves more
time just in case).  There are several motels there.  We usually stay at a La
Quinta on Quarry Lane.  If you contact them directly and tell them you are there
for the Cleveland Clinic they will give you a reduced rate of $52/night.  It has
recently been remodeled, has free continental breakfast and parking (of course
you have to pay to park at the Clinic).  It is as nice as any place we have
stayed, very safe, even has WiFi.

Again, just some comments but feel free to contact me directly if you are
interested in more detail...be glad to help in any way we can.  Know what it is
like going in to the unknown.  Hope that things go well for you

From: jpouchsupport@yahoogroups.com [mailto:jpouchsupport@yahoogroups.com] On
Behalf Of rstratmanns
Sent: Tuesday, December 01, 2009 8:49 PM
To: jpouchsupport@yahoogroups.com
Subject: [I] [J-Pouch Support] Cleveland Clinic



It has been suggested by my Gastro here in St. Louis, MO to see a physician at
the Cleveland Clinic. I have an appointment with a Dr. Bo Shen at the end of
December.

I was wondering if anyone could provide any feedback as to their experience
there and if there are any recommendations on hotels in the area.



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

Dr. Shen is a wonderful, compassionate doctor and will do his best to help
you.  They have several hotels on site with shuttle service to each of the
buildings.  The operators at the Cleveland Clinic are very helpful and they
  can give you the names and phone nos. of the hotels.  Best of luck.

Dorian Burt
386 295-4610
The  information transmitted contains confidential information that is
legally  privileged. The information is intended only for the use of the
recipient named  above. Any review, retransmission, dissemination or other use
of,
or taking of  any action in reliance upon, this information by persons or an
entity other than  the intended recipient is prohibited. If you received
this in error, please  contact the sender and delete the material from any
computer


In a message dated 12/1/2009 8:49:51 P.M. Eastern Standard Time,
rstratmanns@... writes:




It has been suggested by my Gastro here in St. Louis, MO to see a physician
  at the Cleveland Clinic. I have an appointment with a Dr. Bo Shen at the
end  of December.

I was wondering if anyone could provide any feedback as  to their
experience there and if there are any recommendations on hotels in  the area.








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

It has been suggested by my Gastro here in St. Louis, MO to see a physician at
the Cleveland Clinic.  I have an appointment with a Dr. Bo Shen at the end of
December.

I was wondering if anyone could provide any feedback as to their experience
there and if there are any recommendations on hotels in the area.

The Only Swine Flu Survival Guide You'll Ever Need -  A Presentation by ANTHONY
BECKETT


TUESDAY 8TH DECEMBER, 2009 DOORS OPEN 7:30PM


(UPSTAIRS)THE SHIP & MITRE
133 DALE STREET
LIVERPOOL L2 2JH

£3.00 ADMITTANCE



An outbreak of influenza occurred in Mexico during March and April 09. By the
time it spread to the United States and Europe, the virus was found to cause
only mild cases of a flu-like illness. Despite predictions of massive numbers of
deaths, the virus remained a relatively mild disease, similar to what we would
expect from a seasonal flu epidemic.

Yet almost immediately, and in a mist of media frenzy the World Health
Organisation (WHO) raised the pandemic level to the highest level 6: `widespread
human infection'. However, WHO began encouraging governments to report figures
without testing for the disease in patients while they planned the stockpiling
of anti-viral drugs and compulsory vaccinations.

Vaccination programs are controversial at best and with the Swine Flu being
hyped so heavily by the mainstream media the real threat to the populations may
end up being from the solution to the media-hyped problem. It is apparent that
the mass vaccination program will be the vaccine safety study for those
vaccines. A risky approach to healthcare a best. And now media reports suggest
that the virus has mutated and is becoming a more serious threat.

This has all the hallmarks of a psychological operation. But an operation drive
by WHO?

Corporate bioterrorism? The NWO depopulation agenda? Or simply a legitimate
reaction to natural pandemic cycles?

The question you should be asking yourself is this: do you put blind faith in
the corporations who "screw up" time and time again and profit every inch of the
way?

Your life and the lives of your loved ones may be at stake.


Anthony Beckett

Anthony Beckett was born in 1975 in West Yorkshire and lives near Skipton. He
studied Chemistry at Loughborough University and graduated in 1997. Continuing
his studies with a M.Sc. in Analytical Chemistry from the University of
Huddersfield in 1998 he went on to work in the Pharmaceutical Industry as a
Analytical Scientist until 2006. He quit the industry in that year after slowly
waking up to the reality of the negative impact the pharmaceutical industry has
on peoples health and society.

He is now a Web Designer and Programmer and continues to research the areas of
Exopolitcs, New Energy Technologies (Zero Point Energy), Suppression of
information by Space Agencies and various other subjects. He, along with
co-activists in the Whole Truth Coalition, organise events, lectures and
speaking tours around the UK and he worked on researcher David Ickes 2008
election campaign in a By-Election in the East Riding of Yorkshire. Anthony has
also given lectures on Mars Exploration, Hyper-dimensional Physics and the link
between Theoretical Physics and Spirituality.

Anthony runs the truthforum.co.uk with other Leeds based activists. His personal
website is www.anthonybeckett.com


http://www.beyondknowledgeseminars.com/index.html

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@...