Staci 2012-04-13 18:08:10
My doc suggested yesterday that we need to start thinking about
removing my colon. Apparently I have no good spots, so they won’t be
just taking the bad. I, of course, want to learn about all of my
options. I’m looking into J-pouch and understand there are also S
pouch, W pouch, etc. Someone in to the point layman terms explain some
of this to me please.
Also, if I’m not currently on steroids, will they most likely put me on
them during my recovery period. How long do you usually stay in the
hopital for first and second surgery? Then how long do you have to be
laid up at home after that?
I’m very short wasted, is this going to be a problem with my bad
rubbing my pants constantly? Will I have to change my diet
Thanks in advance.
Staci 2012-04-13 18:08:12
One more question, does medicare generally cover this procedure?
Merlin 2012-04-13 18:08:16
Have had 3 surgeries – hospital stay was 5 days for each.. and
recovery ranged from 2 months to 6 months. The first one was 6,
because I went in pretty ill anyhow. If you are not pressured to
return to work, take as long as it takes.
I have a normal colostomy after part of colon removed due to cancer.
It has become a minor hassle – no change in diet, activities, etc.
I did have an ileostomy along the way – that was more problematic, as
there was more “liquidity” output, and one tended to dehydrate more
Mombu 2012-04-13 18:08:20
List recommended by American Society of Colorectal Surgeons:
This site is a 6 page article by ConvaTec on
ileostomy surgery and stoma care:
When you go to have your ileostomy location marked for surgery, go a
day or two early and
ask the E.T. Nurse to let you wear an ostomy bag with some applesauce
in it for a day or two to find if the location will be comfortable.
The site should be marked below the belt line if possible so not to
have problem of
belt crossing the pouch.
Also ask the Surgeon to make your stoma at least 1″ to 1 1/4″ long
after post-op swelling
is gone. This will allow the out put to fall directly into the pouch
with out bunching up or
clogging around the stoma and making the seal prematurely fail which
causes most leakage.
Good luck and be well,
Charles in TX
Staci 2012-04-13 18:08:23
Thanks all of you so far. Keep it coming, please.
Ron g 2012-04-13 18:08:34
I ended up with pulling my shorts down a bit and letting the pouch hang down
(over) the shorts.
I have never had a problem with the shorts elastic ring rubbing the bottom
of the f***** and ruining a wafer or pouch.
Margaret wilso 2012-04-13 18:08:37
I hope you mean you let the pouch hang outside your *under* shorts. Walking
around with the pouch outside one’s pants might draw unwanted attention.
….Though it would save that “right hand checking pouch volume” every now
and then. 🙂 I just had my ileostomy reversed in May, and while I had it,
I found that the waistband of my underwear did run across the very top of
the pouch. But I was using a Coloplast pouch that had a vent at the top, so
it didn’t have pouch contents “up there.” I’m only 5’0″ tall, so I found
the 12″ pouches too long and the 9″ or 10″ pouches had to be emptied too
frequently. Coloplast makes an 11″ pouch, and on their velcro closed
pouches, you can turn up the bottom and tuck it inside a clear plastic flap
on the pouch front. Doing this and putting the pouch on at a very slight
angle (so it pointed to my crotch) made the pouch just the right length.
Otherwise it bunched at the leg band, and the corners would poke me in the
leg. BTW, I started out with a one-piece and found that two-piece systems
are actually simpler. That is, you don’t have to look through the pouch
when making sure you’ve got the wafer on right (I had an asymetrical loop
ostomy). And if you don’t get it at just the right angle the first try, you
can swivel the pouch on the wafer ring (on two-piece systems). Further, if
you ever have a problem with the pouch itself (rare in my case), you can
change the pouch without changing the wafer.
To the OP: After your surgery, they’ll stick on you whatever pouch the
salespeople are pushing at the time. Once you get home from the hospital,
call all the vendors and ask for samples. They’ll ask about your stoma
shape and size, but make sure to tell them you’re short-waisted (and any
other pertinent details such as round or flat belly, etc). I found
Coloplast and Hollister to be quite generous in sending out samples.
Convatec was less generous, but they did send some samples in the end.
Although my ET nurse recommended one pouch, I actually found a different
system to work much better. So don’t get disappointed if you try several
systems before finding the right one for you. I had to wake up covered in
you-know-what on a few occasions before I found a system that fit well and
didn’t leak. Still, even with the extra durable wafer, my output was acidic
enough that I had to change every three days. Sometimes I could go four,
but it usually meant some skin erosion. Everybody’s different, and
fortunately there are *lots* of systems to try.
Mr fed up 2012-04-13 18:08:42
Well dang shame though. The public could use a little education on these
of surgery. I knew nothing when my Mother had her surgery. I had not even
heard of this. Maybe someone could get on Oprah or Montel and teach the
world a bit about unseen problems folks deal with everyday. Uuumm
during breakfast or lunch hours maybe. Would be as good as some of
the other junk on the tube these days.
Don’t forget when they say leak… they mean FLOOD
Good luck y’all
Margaret wilso 2012-04-13 18:08:45
You’re right. I knew of this type of surgery, but as mine was done on an
emergency basis, I was totally unprepared. And so many people have said to
me, “they sure are *a lot* better than they used to be.” Well, to that I
say *thank goodness* I didn’t have one way back then, because in my
experience, they’re pretty horrible now! Unfortunately mine was done by an
egomaniac hack, who’d botched an earlier bowel resection, causing
peritonitis. (Sadly no one realized the first surgery was botched.)
Anyway, my ostomy prolapsed and herniated during the six months I had it. I
also spent nearly six months on IV antibiotics, only to have the infection
return when I went off them. Frankly it was one of the most horrible
experiences of my life. Fortunately I found a very good colorectal surgeon
who was able to clean up the infection and reverse my ostomy … in *one*
operation. The hack operated on me *four times* before I finally refused to
let him touch me again.
I can’t quote statistics, but there’s a *huge* number of people with
inflammatory bowel disease, and no one talks about it or makes any effort to
get us better bathroom privileges. I’ve nearly sh*t my pants on a number of
occasions while women were chatting in the bathroom stalls. I have friends
who’ve had it happen to them.
You’re right again. If you don’t catch it when it starts to leak, it is
definitely a flood. My problem was getting myself to wake up at night to
empty. I found myself sleeping through alarms, only to wake up with a
dirigible attached to my belly. Running to the bathroom with my pouch in
both hands was *not* fun. Learning to empty without causing an “ick shower”
when the pouch was full to bursting was also *not* fun. And cleaning up
myself, the bathroom, and sometimes my bed in the middle of the night was
My advice is most importantly, make sure you go to a good colorectal
surgeon. I’m told a properly done ostomy is nothing like what I
experienced, that is, so much better. If you’re not 100% happy with your
surgeon, *run* and go find one that you *are* happy with. I’m lucky I
survived my experience with a hack surgeon. Please don’t let it happen to
Access systems 2012-04-13 18:08:49
believe me folks have tried and tried, but not the kind of subject that
gets ratings quite like who is sleeping with whom
again the importance is the quality of the doc, and the level of your
emergency. in my case my ostomy was more or less elective, I could see
the handwriting on the walls, and “chose” to have it done on my schedule
while healthy rather than wait til it was an emergency by what ever hack
happened to be in the emergency room or on call. mine was done be the
head of Urology (Urostomy) at a major teaching hospital with his #1
student using me as his “final exam” before getting his specialty license
after 5 years of training in Urology. I have not (knock knock on
wood) had a minutes trouble with my ostomy and I have said many times the
only mistake I made was waiting so long to do it.
duh! flood is urostomy, maybe mudslide or something…;8*} urine can
find holes in system you can only imagine…. fortunately the appliances
we have today are fantastic compared, my best friend had his illiostomy
over 40 years ago in the dark ages, I sat with him thru his surgery and
saw his recover (back then your stay in the hospital was measured in
months) so knowing how much it helped him I knew it was a livewithable (is
that a word?) experience.
you are so right. the importance of a good surgeon is paramount!
they laughed at me in the hospital but I was “a***” about washing and
wearing gloves etc. even made big sign and put it on my hospital room
door telling EVERYONE who came into my room to wash with antibacterial
soap and put on a NEW pair of gloves. I had boxes of gloves and soap in
my room for “their convienence” I even washed and wore gloves until I
healed when I touched myself. (infection is a much bigger problem in
Urostomy) maybe it worked or maybe nothing would have happened anyway but
never had the slightest infection, never even had a single antibiotic
during my stay and recovery.
ONLY you have your own best interests #1 in your care….take charge and
control your own care.
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