Fatigue and diarrehea control

msccolon said:

I am sorry your husband is having such a hard time of it
the diarrhea can really bring a person down. It is VERY important that he stay hydrated, and with the dizziness, it sounds like he isn't keeping enough fluids in; he might need IV fluids. Ask about a shot of Sandostatin, it should help with the diarrhea. I don't think they should continue with the next treatment if his diarrhea isn't under control. I don't have a bag, but the diarrhea did really get me down; I was an emotional wreck since the diarrhea would tire my body out tremendously. Hyoscyamine really helped me, it's an antispasmodic, but I would imagine the tincture of opium should do the trick as well; seems to me Rick Murtagh has had experience with that here on the board. Welcome to the board, and I sure hope things start to look up soon! Stay strong and see what his doctors say about getting fluids in.
mary

John23 said:

Diane -
Kim gave you good advice....

With an ileostomy, the output is never thicker than thick gravy,
and can be near total liquid most of the time.

High carb foods (pasta, etc) will thicken output, while low or zero carb
foods (meats, etc) will produce more liquid.

There will be bouts of what's called a "dumping syndrome", where
what you eat will go into the bag within 15-20 minutes. These bouts
can be a few times a month, and/or lasting for weeks.

As an ileostomate, we are always on the edge of dehydration,
since the loss of fluids is near constant, and there is no colon to
recycle the liquid. The ileum can not absorb more liquid than it
was intended to, to take the place of the colon's duty.

Drinking 4-6 ounces of water every hour, can offset the loss,
but once dehydrated, it's a difficult job to get re-hydrated; the
system is no longer "normal", and does no longer function like other's
do.... and an ileostomy is very different than a colostomy, so advice
from a colostomate won't necessarily be suited for an ileostomate.

Beginning stages of dehydration will not be readily indicated.
There will not be an increased thirst, or darker urine, or other
"common" signs. There will be fatigue, loss of energy, heart
arythemia, dizziness, etc, typically. Blood tests will not indicate
the beginning dehydration. An ileostomate is subject to kidney
stones and bladder stones as a result of both deydration and
the loss of minerals and nutrients needed to stabilize the kidney
functions.

Doctors and nurses do not always understand the problems of
an ileostomate, or the nature of the ileostomy. They will often prescribe
slow release medicine, not fully understanding that the medication will
not get absorbed, and will end up in the pouch undissolved.

If you do a search on this forum, for "ileostomy", you should find
many references to what's been said here.

You can also get some info at the UOAA forum. Most individuals
there are not cancer victims, and feel differently about having
an ostomy, but they do have decent advice. (Look up "Terry" from
the UK at that site. He's got a ton of good info.)

If I can be of any help, just give a yell.... There are easier ways to
do anything, and I've found some easier ways to deal with an ileo.

Good luck!!

John

John23 said:

Diane -
Re:
"He started the tinture of opium just yesterday"
"The doctor currently has him on tincture of opium liquid to try to stop the diarrehea. "

Egads.

First of all, Opium is going to make him fatigued, and it'll slow
the rate of absorption of the intestines. He's dizzy all right; he's
looped. He also sounds like he's dehydrated.

I don't know why so many physicians don't understand what
an ileostomy is; how it acts. They seem to think that liquid output
is "diarrhea".... Liquid output is frikkin' normal. You can't fix
a non-existent problem without making more problems. UGH.

There is a valve called an "ileocecal valve" between the ileum
and cecum (the beginning of the colon). When they give you
an ileostomy, the ileocecal valve goes with the colon; you lose it.

The ileocecal valve keeps bacteria and waste in the colon from
backing up into the ileum, and....... it also acts as a valve that your
body uses to help control the flow of product from the ileum into
the colon.

Without that valve, product is not controlled, and goes as fast as it
can from the mouth to the pouch. It usually takes about four hours
for product to move from mouth to colon, but without that valve,
it can go through in 15 minutes. That ain't "diarrhea", it's what happens
when you screw with mother nature...

Aaarrrraagghhh.

Ok..... You really, really ought to get other opinions from other
qualified physicians that know something about ileostomies.
You really should get other opinions.

That said..... I have had an ileo since my hospital stay almost
4 years ago. It takes awhile for the system to find it's way
after being poked and shoved and twisted, and having major
sections removed. For a awhile, there are going to be days/weeks
and months of what nothing can seem to control. It's normal.

Taking medications in an attempt to control it will make the problem
worse, and it will take longer for the system to settle into it's new normal.

Print this out, and whack your physician in the head with it, after
wrapping it around a rock.

Your guy will slowly start to feel better as time goes on, unless
the chemo is doing the damage.. then all bets are off. But if he
continues taking things to try to cure "diarrhea", he's going to
be like this for quite awhile longer than most others.

His system is attempting to find itself; stop confusing it more.

(whew)

John