26yr old with an ileostomy; success story :)
I've not been on here for such a long time. Last
time I was on here my boyfriend was facing the
prospect of stoma surgery back in the summer, and
now here we are, 5 months later, with a very
special little friend we've affectionately named
Having Rocky in our lives has changed everything.
Mostly, I'm pleased to say, for the better. My
boyfriend has adapted to life with an ileostomy
amazingly well, with very few down days (which are
only to be expected fr...
After ileostomy surgery
I am 9 days after surgery. Nothing could have
prepared me for this. The pain, not feeling well,
the constant trips to bathroom. Its hard work. I
have had leaks and dont know why. Not being able
to do much for myself. They kept telling me in the
hospital "your doing great, your doing
great". When I got home totally did not feel
like Im doing great. My ostomy nurse ordered me
supplies and now I have so much stuff I dont know
what is what. I am extremely overwhelmed and feel
Need guidance - getting a reversal for my loop ileostomy
Hi all. It's been a while since I've written. I am
happy to say I've been given the green light to
proceed with an ileostomy reversal but I'm nervous
as hell. I've tried to find input from others on
this site but find there's not much out there on
reversals. Looking for any advice from those who
have experienced a reversal. Thanks.
Hi everyone, serious newbie here.
I am due to have an ileostomy in a few months
time. I have had a stoma for about 15 yrs due to
having an ACE button. But having an ileostomy bag
is scaring me to death, although I know it's going
to make my life easier and hopefully I will be
able to start going out and about again and not be
tied to a loo for hours on end!
I was just hoping if anyone can tell me the sort
of things to expect after the op..whilst still in
hosp. And also how long it took peo...
Does ileostomy output have mucus from digestive tract.......
in it like normal bowel movements do?
I still have 90% of my colon and was wondering if
mucous from the digestive tract is also present in
ileostomy output like it is in regular bowel
I know ileostomy output has digestive enzymes NOT
present in normal bowel movements that make it
corrosive to the skin should your bag explode or
leak. So, when the output comes in contact with
your skin, it thinks its "digesting" it
so it gets all red and painful.
I just want to know...
New to site, new ti ileostomy
hi, i just wanted to introduce myself and ask a
Ive recently had surgery and have been left with
(i hope) a temporary colostomy, im still trying to
recover from the surgery and having a lot of
concern about living with a bag. i know it will be
difficult at first. i work full time, but have
been off sick for 6 months already. im extremely
concerned about how this will effect my work, i
work in close proximity to lots of people and have
reservations regarding the noise/smell from...
Preparing for final part of ileostomy reversal
I joined this forum recently in search of people
to talk to who have already been through a
reversal of the colostomy bag. I myself have
undergone the first part of the reversal, and i'm
due to have the second part at the begining of
june. I'm looking for advice on ways to prepare
for this, mentally and physically!
I also welcome any questions people may have about
what i have gone through so far and advice :)
Discoloration of ileostomy
I noticed this morning that I have a discolored
area at the opening of my ileostomy; it is a
small brown/gray area (not discolored from any
There is no pain or any other issue.
Irrigation if not ileostomy
Hi my name is neil I have a colostomy since
August 2013 I have a large lump its hernia
which is causing pain and discomfort and leaks the
surgeon said he will fix the problem wants me to
irradiate if that dont work as my colon ant in
great shape he will give me a ileostomy dont know
how well irrigation will work or how much more
work a ileostomy is if you can help with anything<
I have had an ileostomy since last april due to a
small bowel resection, they took about 2.5
feet from me. I am wandering about a reversal,
wandering if they will be able to do it. My
doctor was worried about adhensions. If any one
has any suggestions I would love to hear
Is an ileostomy reversal at 5 months too soon???
Hi all. Looking for feedback from anyone who has
had a reversal or is being considered for one. I
am 3-1/2 months post ileostomy and my surgeon has
said I am a candidate for a reversal. He wants to
scope me next month to make sure everything
"looks good and healed" and if it does
he plans to do a reversal in March which will put
me at 5 months post ileostomy. Originally he told
me six months minimum so this caught me off guard.
I'm nervous because I don't want to rush into
Ileostomy and salads
Fairly new to this site, not too sure if I am in
the right place, just wanted to know if there
Is any info or what is every one's take on salads,
that seems to be the one thing I miss
Not eating, has any one here ate them and if you
had any problem like with the lettuce. Thanks for
I am new to this, so I will tell my story and then
see what comments are made. Ok, well back in 2011
I was diagnosed with cervical cancer so I started
chemo and radiation. I had 35 radiation and 4
weeks of chemo and also 4 internal radiation. went
back to work felt fine even thru 2012. well Jan. 3
2013 my stomach started hurting severly went to dr
they thought it was gall b ladder so they took it
out. well I still was hurting so I ended up going
to another hospital, I was there 9 weeks. They
Worried - slow output from ileostomy
It's been a while since I've written and here I
find myself again looking to you all for advice.
For the past 10 weeks since my surgery my stoma
has produced a consistent flow. However, now in
my 11th week, I barely have any output for the
past 5 days. I don't have discomfort or pain, I
just don't seem to have much output yet I'm eating
more now than before. I should mention my stoma
is recessed into my belly a bit and my skin is not
good because of this. I have been using paste to
try and ...
Back pain since ileostomy
So, I posted once before about the constant back
pain I now have since surgery. Well, at my second
follow-up I brought it up to my doctor who
"assured" me that he's never heard of
such a thing. Am I just crazy or aren't there
plenty of you out there who now suffer with back
pain. I should mention I have an ileostomy.
Needless to say, Christmas shopping has been just
about impossible because of the back pain.
Open colostomy reversal and new temporary ileostomy
Long story short: On April 20, 2013 my colon
perforated due to diverticulitis. I arrived by
ambulance to the hospital already in full blown
septic shock. I was in the operating room for 5
hours and then transferred to ICU on life support.
My family was told that if I was alive in 72
hours I might have a chance but they should hope
for the best and prepare for the worst. Five days
later I awoke in ICU and taken off of life
support. I spent the next two months between the
hospital and a n...
Hello my Ileostomy bag keeps filling up with water
been doctors they gave me dirolyte and immoduim
but nothing working. Can someone help me please ?
I had the ileostomy reversal a month ago I am
still feeling a lot of rectal pain and am trying
to control my elimination but often have accidents
daily. Does anyone know how long it takes to stop
hurting and to get control? I kind of feel like I
have uc again. I'm glad the ostomy is gone
Back pain after ileostomy surgery
I have never suffered from back pain until now. I
am now 4 weeks post op and find the littlest
amount of walking and/or standing causes me
terrible back pain. Even when I'm sitting down I
must prop pillows behind my back to avoid the pain
and discomfort. I'm wondering if anyone else had
this problem post-op. I'm hoping this is maybe
because I had a large incision cut down my belly.
Any input is appreciated. I
Rectal pain and pressure post ileostomy
I'm four weeks post op today and am having the
worst day yet. I've had occasional days of rectal
pain and pressure which has usually meant I need
to pass some mucus and once I do I have relief.
Well, today starting around 7am I have been in
constant pain with pressure and can't get any
relief. I've tried a couple times to sit on the
toilet and see if I couldn't push out some mucus
and nothing is coming out!! I am miserable. The
only thing giving me relief today is sitting on
the heating pad...
Recent ileostomy and passing stool from my rectum - worried
Once again I am turning to you all for advice. My
surgeon had told me that once in a while I might
find that I pass mucus from my rectum even a small
amount of stool. He did remove about 1/3 of my
rectum but said I still have enough of a
functioning rectum that this could occur. Well,
in 3 weeks since my surgery I have now passed
stool 5 times. This seems crazy to me. It's
always a small amount but still I really don't get
how it's happening at all. Has anyone had this
experience and this ...
Me again. I keep writing because I find myself so
lost in this whole thing. Question for anyone out
there that has undergone ileostomy reversal. I've
been told if all goes well and I heal well I
should be able to undergo ileostomy reversal in 6
months but before that I will have to successfully
complete a defecating proctogram. Because my
rectal muscles don't work real well I did not do
well taking this test prior to surgery. I'm
wondering if anyone else had to take this test
and/or how do ...
Hi. Had my ileostomy 10 days ago and struggling
with my output. Doctor and ostomy nurse say I
should have output of 800cc's a day and I'm having
about 400cc's a day. Doing my best to follow the
low residue diet and drink plenty but can't seem
to increase output. Should I be concerned? Any
advice is appreciated.
Possible hernia after ileostomy surgery
Looking for some advice. Had ileostomy surgery 11
days ago and now that I am home have noticed a
bulge to the left of my stoma which is quite
painful. I should mention I had this bulge after
surgery but the sharp, burning pain began two days
ago. This area is very tender to the touch and
hurts considerably. Every where else pain has
diminished significantly. Should I be concerned
about the possibility of hernia? What symptoms
should I look out for? Any advice is greatly
appreciated. I ha...
Open skin wounds developing around ileostomy stoma
I have had my ileostomy since 1991 when I was 19.
I am now 42 and have started having open wounds
develop on the skin immediately surrounding the
stoma starting about a year ago. I have never had
this occur in all these years. These wounds are
not being caused by any excoriation issues,
changes in skin care products, my hygiene routine,
etc or anything else I can possibly think of. I am
a registered nurse and have very good hygiene and
take exellent care of my stoma and use
Night drainage for ileostomy?
I purchased a urostomy container so I can plug it
into my ostomy and empty at night. I think the
tubing is too small and it won't work.
Are there night drainage devices for an ileostomy?
Ileostomy and food
Hello does anyone know what food to stay away from
or what is good. I only had this done so I am all
new to this.
Hi I just had the ileostomy but im finding it
leaking. Is this normal ?
How do you gain weight after an ileostomy?
Hi - I guess this is the correct forum to ask post
this. My husband has bilateral nephrostomies, a
urostomy, and now an ileostomy. He hates Ensure,
Boost, Special K breakfast drink, and Carnation
Instant Breakfast. I've mixed them with ice cream
and fruit and he just can't take stand the taste
of them anymore. I've been trying to get him to
drink two or three milkshakes each day - today was
whole milk, vanilla ice cream, powdered milk,
three mini 3 Musketeers bars, and 3 tbsp peanut
butter. He ...
Spinach dip after ileostomy
I know that cooked spinach is a bad idea with
ileostomy, I was wondering if anyone had tried
spinach dip? There is some in the fridge and it is
looking very good.
Possible hernia symptoms with ileostomy
I have ostomy on my left lower abdomen. For the
last year I have been experiencing a burning
sensation from left hip bone to left edge of
ostomy. No pain but the burning at times is very
uncomfortable. I have a nice size raised area
underneath the sticky portion of my wafer hence
making the wafer on the left side pull away from
my skin and having to change it. I seem to be
changing it every day where as before the
'hernia', I would change every 5-7 or 10 days. I
have a GI appointment at Walter R...
Ileostomy and colonoscopy
I am scheduled for a colonoscopy on Thursday and
pretty confused. I still have my colon, but due
to abscesses on my colon and a fistula, I was
given a (temporary?) ileostomy. Trying to get a
correct diagnosis. My question is: why do I need
to do this movie prep and fleet enema when my
colon should be empty from all the testing they
did in my two week stay at hospital.
Also, can anyone advise me on what I can eat that
won't go right through me so fast. I eat bananas,
breads, pasta, pectin j...
Ileostomy and kidney stones
I've had my Ileostomy since November 2005.
Everything has been going fine with the Ostomy
EXCEPT. I seem to have reoccurring kidney stones.
Has anyone else experienced the same problems? I
drink plenty of water and try to watch what I eat
but I still keep making them. Right now I have a
stone (size of a peanut) in my right kidney. My
Urologist just completed blasting and clearing my
left kidney with a stone about the same size. We
are getting ready to start working on the right
kidney. Any comm
Ileostomy reversal- successful...positive....a must read
Hi ...i had a emergency ileostomy done in feb
2012. I was on life support and in a coma in icu
for over 4 weeks.
It was a shock to wake up with this bag hanging
off me....they said they could do a reversal....in
a few months...
Well a few months turned into 15 months....because
i had a infection and plus the surgery was
scheduled 4 times and cancelled....twice by the
doctor..to put a emergency in my spot and twice i
made it to the operating room only to have it
cancelled because of my lung...
Total proctocolectomy with permanent ileostomy.
Can it be reversed? Ive searched and searched for
any info on it and i'm coming up with nothing.
I'm OK with living with the bag I just didn't know
if maybe sometime down the road i wanted to
reverse it, I could? Anyone know anything about
Medications with an ileostomy
I am on quite a few medications, including several
that are timed released. After asking my
pharmacist, I found out that most of them are
absorbed in the colon. Since I no longer have a
colon, I am very concerned that I am not absorbing
enough of my meds. I see the little white balls of
medication just released in my bag...floating
Do any of you have this problem? Have you had to
have any of your meds 'compounded'? My pharmacist
has helped very little and I thought since that
Ileostomy due to fap- additional issues
I had my colon, rectum and anus removed due to a
diagnosis of FAP, but now they are saying that I
have hundreds of polyps in my duodenum.
Is there anyone else on here who has FAP and any
problems with their duodenum? I'm trying to
figure out my options but the surgeon I spoke to
seemed clueless when I mentioned the PSD surgery
over a Whipple. It was rather frightening to see
that I might know more than a surgeon. But
thankfully I am not opposed to traveling elsewhere
to get an informed 2n...
Ileostomy / urostomy
Hi all i have ileostomy since 1981 now i have been
told i need a urostomy!.Has this happened to
hi some1 must be to give me some advice, i had my
operation september 2010, i get phantom poo pains
on a daily basis but the last couple of weeks i
felt more severe cramps and pain. usually just
mucus would weep from my bottom but now it seems
its actual poo in my passage, i have tried to
strain but the pain worsens and gets un-bearable
and bleeds, has any1 had this problem? if so what
did you do?,,,,
awaiting any advice
thanks in advance
3 months into an ileostomy, have questions
Have a temporary Ileostomy which is scheduled to
be reversed in January. I've had a bunch of
problems with leakage, ended up going with a
Hollister wafer for low profile stomas along with
high tension on the ostomy belt and that really
seemed to help.
After that I started having issues with leakage
between the wafer and the bag. Started using
superglue to hold them together and it worked with
minimal results then tried ostomy paste and so far
Still having some leakage issues. At...
Ileostomy reversal after having bowel obstruction
I struggled with bowel obstruction for about 10
years and after plenty of operations to remove
obstructions I ended up with an Ileostomy. Is
there anyone here that has had a similar thing
happen to them and what are the chances of
I have had my ileostomy for three years now and
still have not gotten used to it. If I eat after
2pm in the afternoon I am up all night having to
empty my bag or in fear that I will have a break
because a thicker consistency will break through
the barrier. This ensures that I only eat once a
day really and I am constantly hungry. Also, I
have yet to figure out which product will work to
make sure I don't have breaks due to thicker
output and how to ensure my skin around the stoma
is not sore and...
Gall bladder removal and ileostomy
I'm considering having my gall bladder removed,
and would welcome any information from ostomates
who have had this operation.
I have an ileostomy (no large colon at all) and am
interested to hear others' experiences of how the
constant flow of bile affects digestion and output
If anyone has any tips on how to avoid gall
bladder removal, that would be brilliant too!
Ileostomy output - very inconsistent texture!
Ileostomy due to rectal cancer surgery here - just
4 weeks in. Still getting used to stuff.
Some days it's like peanut butter, but for the
past 2 days it's been complete liquid. I know
this is based on what I eat, but I had lots of
pasta yesterday so I'm worried about the output.
MAJOR MAJOR gas too! I'm going to try the
marshmellow and BEANO advice you've all given
Is it always going to be inconsistent textures
Loop ileostomy revision? is this possible?
Hello ostomates! First time posting, but I lurk
some on this site.
I have to say that I did search for this subject
on here, but couldn't find anything specific for a
temporary loop ileostomy revision.
Quick story: my colon came out in November in an
emergency surgery after 11 years of ulcerative
colitis. I had an end ileostomy that I could deal
with until this past surgery in August - where
they constructed my J pouch and loop ileostomy.
My reversal is supposed to happen around Than...
Ileostomy reversal question
I had C.diff for over 4 years and had tried
every medication that was avaliable, I had 2 fecal
transplants, and it was starting to effect other
parts of my health. My kidneys were only
functioning in the 70%s and I was retaining over
20 lbs of water, I couldnt sleep, I couldnt go
out, I was constantly on the toliet. I had seen
many different GI specialists and Colo-Rectal
surgeons and they had me tested for other things
just to make sure they werent taking me colon out
and going to find ...
New to ileostomy
Had my ileostomy five months now, just begining to
get my head around it.
I live near Lincoln and would love to chat and
Ileostomy - scar tissue and pain
About 8 months ago, I (ilostomy '09, proctectomy
'11) started hgaving some intermittent, occasional
pain to the right of my ostomy (about 1 to 1.5
inches from the stoma).
Saw GP who seemed to ask the right questions and
said it was probably muscle related (ostomy
working fine). I had had a particularly active few
months ... so with my poor abdominal
strength/muscles, his diagnosis seemed to fit.
Slowly got worse. Pain is worse (knife like) and
now hurts with any movement. Sit...
Post ileostomy stomach flu- like sypmtoms
I had an ileostomy in 1976 at age 28 for
ulcerative colitis with no after effects. I know
how lucky I am. In my early 30's I went to Europe
and got terrible stomach or what is left of my
small intestine pains, with vomiting and liquid
output. I lost about 10lbs in weight due to fluid
Nothing signifant after that until I was in my
fifties and now I continue get this
intermittently. It is really painful and lasts
about ten days each time.
Has anyone had a similar experience? Aside from...
Colonoscopy preparation with an ileostomy
I am having my first colonoscopy this week and I
have an ileostomy. I dont understand why they
have mailed me the golightly and pills to take
after I heard that someone with an Ileo should
never take laxatives.
Isn't it dangerous to drink a gallon of that vile
So i have an ileostomy
July 3 i seen my dr for a check up every-thing is
ok . After exame he gave me my opptions
1) do nothing
2) remove rectum stump sew up anus
3) j-pouch ( no nothing about j-pouch and
am terrified )
As we were talking he said with j-pouch i could
expect 8-10 bath-room trips aday
and anus leakage periodicly . I told him i just
drove 1 1/2 hrs to see him and did not have to
stop once for a bathroom visit .When i first
started seeing this doctor in the same trip i
Hi I am an almost 23 yr old female who just had to
have her colon removed for having severe C.Diff
for over 3 1/2 years and it was causing major
problems causing my kidney function to go down to
low 70's and exreme water retention around 15
lb's. I was wondering from other people who have
had there colons removed how much weight they have
lost in the 3 weeks after surgery. Different
doctors have given me way different numbers but I
just wanted to know from some people who actually
had the surger...
1st date after my ileostomy
Hello all I have had my little friend since
December 2011. I did think it was hard enough
finding a fella as a single mum but this makes
things that much more harder.
I met a guy on a dating site so have had the
chance to get to no him and him me before meeting.
Well the time has come to bite the bullet and will
be going on a date tomorrow night. The only thing
im worried about is telling him about my stoma and
have said from the start that I would tell who
ever I go out with about it just a...
Anyone with an ileostomy done slimming world/low carb diet?
I have recently been told that my bowel
resection/reversal is likely to be in September
this year which is earlier than I thought. Great
news but less time to lose weight before surgery.
surgeon says it will make things easier - want to
lose weight gained recently in any event. In the
past prior to ileostomy and gastro problems had a
lot of success with Slimming World which
essentially for those who don't know focuses on
excluding fat, sugar and refined carbs eg white
Ileostomy & dehydration
Hello all! I need some advice. I have had my
ileostomy since 10/11 & we are just now
getting into the heat here in the South. I was at
my daughter's softball tournament yesterday &
it was about 90 degrees here in Georgia. I drank
ALOT of water & Gatorade yesterday & also
ate fruit, but was really dehydrated & zapped
from the sun yesterday. I am afraid that I have
seem a glimpse of things to come for the summer
& I want to know if any of yall have any magic
potions or tips...
I have had an ileostomy (Crohn's related) for 9
months now. At the start it recessed, then a few
months ago began protruding, now is about 15cm
out. But at nigh when lying down, it often
retracts all the way back.
Anyway, I have read about a surgical technique
using a stapling device, where the surgery lasts
15 - 30 minutes and it is done under sedation.
Anyone experienced with having such a prolapse
repaired? If so, how was it repaired and did the
I am angry, embarrassed and I don't understand.
Whenever I have been to see my GI doc, who I have
seen since 1988, and love him dearly, I'm asked
how I'm doing, number of poop runs per day,
eating, you all know the routine. I have always
answered very honestly. When I'm asked about
" any problems you have?",I tell him yes
I have stomach cramps, chills, a squeaky sound on
my right lower quadrant after I eat. I cuddle up
with my pal the heating pad and a cup of hot tea
until I fall asl...
A pooh and an ileostomy
I have had Norman for 2 1/2 years now and appart
from the occasional urge to pass mucus which I was
pre-warned about, have this week been for a pooh
twice!!! It is real pooh, the same colour as it
used to be, and I am quite concerned. My stoma is
working but at the same time this has happened??
I have had stomach aches a bit like the old
monthly pains and my back has been hurting but why
is this happening. I thought that when I had the
ileostomy the tube was cut and one end was formed
Ileostomy reversal finally done
I was a newbie to the site last year when I
underwent an emergency Ileostomy and the doctors
were surprised that I had no prior symptoms or
illness other than the ones I presented them with
on the day. I havent been too good this last few
months so havent been online much.
I spent nearly two months in hospital from July
1st last year, I felt abandoned by my gp and
dietician and gradually over the months I lost two
stone in weight and by the end of it I couldnt
stand the taste of ...
Medication and ileostomy
Surgery a few weeks ago reconnected my colon
eliminating an colonostomy but resulting in a
temporary ileostomy. I've been seeing my
medications (full pills) spilling out of my bag.
I've switched to liquid ibuprofen and
acetaminophen which seems to be attacking the
pain- but other meds don't come in liquid form.
I'm wondering if others have had this problem and
what if anything you've done to ensure the
medications are getting digested. I'm also
concerned that vitamins are being lost too.
Weight gain after ileostomy
first time posting, I have an ileostomy since
xmas eve 2009. (emergancy surgery). I am 55 year
old female and live in Australia. I have gained
30kgs since then. Cant seem to loose any weight,
getting a bit depressed about it. Just wondering
if anybody else has had the same problem. If you
can help me please let me know.
Prostate biopsy after ileostomy
Have any males had to have a Prostate biopsy after
their rectum has been removed and if so, how was
Can you wear your ileostomy pouch sideways?
I was wondering if anyone has any experience with
wearinig their pouch sideways. I use a two-piece
pouch system. My stoma is located in a kind of
different area - pretty much in the front/center
of my abdomen, just to the right and above my
belly button. Therefore, the pouch hangs pretty
much down the center of my body from just under my
bust to my crotch. Normally, I wear long blouses
to cover past the bottom of the pouch.
I was thinking, though, that if I wore a blouse
that wasn't qui...
Ileostomy reversal, i will let you know how it goes
Guess I will start from the beginning. 2 1/2 years
ago I had a sudden onset of abdominal pain which
got worse over 48 hours. Having no insurance
coverage, I held out as long as I could before
going to the ER with the abdominal pain and no B/M
for over 72 hours.
8 hours after arriving in the ED, I was in surgery
and 12 hours later I had a colostomy.
I will give a blow by blow in later posts but
after an unsuccessful attempt at reversal last
September that resulted in an ilesotomy I was
Ileostomy, diarreha and metamucil
Here's my question does any one have the first two
condition's and do they use Metamucil? I was just
wondering if I should start using the Metamucil
again, would it help with the diarrhea and or what
other benefits that I might get from using it.
Thanks a bunch
Who has both an ileostomy and ileal conduit?
I have an ileostomy since I was 18. Now at 72 I
have been newly diagnosed with bladder cancer
which quite possibly will result in radical
surgery...the removal of my bladder and
reconstructive surgery after proscribed
The end result may be an ileal conduit or
I would welcome talking with an OstoMate who has
Information on ileostomy reversal
So in March of last year, I had surgery to have a
total colectomy with end ileostomy. I was told
that since it was a final determination of
ulcerative colitis, that I could later on have a
reversal if I wished. I'm looking to get
information from anyone who has had this done, or
knows someone who has, to get information
regarding this process. I know that if I do have
the reversal done, it will be a two surgery
process, first to create a small pouch with part
of my small intestine, and the secon...
Hi everyone! I am new to this kinda thing!
So i had my operation last August due to severe
ulcerative colitis. I was wasn't suffering very
long and the fact i had a major operation very
quickly was a bit of a shock! I had to have a sub
total colectomy and an ileostomy. So far
everything is going ok luckily enough! I have a
choice of getting the ileostomy reversed later
this year. The surgeon did mention to me that it
was a more difficult operation & there are
complications that can happe...
Hello, all. I'm so happy I've found this website!
My mother who is 79 had surgery last October, and
most of her large intestine was removed. She now
has an illeostomy bag. Since Mom doesn't own a
computer, she doesn't have access to any kind of
support group, so I'd like to ask a few questions
on her behalf.
She has been hospitalized 3 times since her
surgery, due to blockages in what's left of her
small intestine, which is "free
floating" according to her doctor. Sometimes
How long can you live with an ileostomy
?i have had an ileostomy for 51 years. does anyone
have any information on long a person has lived
with an ostomy? Also, any information about
conditions that are caused by having ileostomy for
so many years would be appreciated.
Watery leakage every morning - ileostomy done 1 yr. ago
I have a question that I am hoping someone can
answer for me. I first had a
"straight-thru" (small intestine hooked
directly to anus) sub-total colectomy done in
2009. this didn't work out for me because I was
having 15-20 bowel movements per day with lots of
"butt-burn." I decided that I had to
have an ileostomy and had it done in Nov. 2010.
Actually ever since the sub-total colectomy I have
a "morning leakage problem." When I get
up in the morning I am comple...
Dating with an ileostomy - any advice
hi. i have had my ileostomy for 2 years now. I was
single before my operation and have 2 lovely
girls. I would like to meet some special, male.
I have tried dating and obviously have had to tell
potential new boyfriends. I found that very hard
as I cant really come to terms with it.
They have been reassuring that it makes no
Why do I feel after telling them I am not good
enough, begin to feel paranoid that
they dont really like and iv put them off.
I cant shake the fee...
Diabetes & ileostomy
Does anyone have ileostomy & Diabetes?
Difficult to stay on a diabetic diet because of
foods cannot tolerate due to the fiber. Any
suggestions? Would like to talk to someone like
Two-piece ileostomy bag
Does anyone have problems with making the
underneath part of this bag (the part that
attaches to the skin) last 3 days like they're
supposed to? I do!
The stoma nurses/doctors say that seeing a white
line around where the bag is fitted after a day is
normal, but I think It's a constant worry, because
after just hours of having a fresh one on, it
feels as though it's going to crinkle or tear. So
I check it out and ruin the seal to make sure it
fits well enough to last 3 days.
I have recen...
Drinking with an ileostomy
Due to recent events in my life, have been feeling
the need to go out and get absolutely sh*t-faced!
As previously I have only had a glass or two of
wine with dinner (and had no problems) was
wondering if I have a few more (and I'm talking
the hard liquor lads here...Jack, Jim and Jose!),
that my ileo will freak out and not be able to
I am not planning on making a habit of it, but am
in serious need of becoming "comfortably
numb" just for awhile. I need to part...
Urostomy and ileostomy
I just have been diagnosed with recurrant bowel
cancer, my question is has anyone got a ileostomy
and a urostomy. this might be a question that will
have to answer to if i get the option after my pet
scan results. I would like to make an informed
choice on this matter.
If i'm lucky enough to get this option. As it is
,i will be getting my whole pelvis cleared. Will
it be worth it? Can anyone help me? PLease suzy
Colostomy reversal, hernia repair and new ileostomy
I need some advice on what to expect and
encouragement. I have crohns disease which was
very active in the decending colon and rectum. I
had a permanent colostomy formed and my decending
colon and rectum removed with the hope that it
would cure all my problems. My remaining
tranverse colon was deemed to be unaffected by the
crohns. That surgery was two years ago and since
then the crohns has appeared in my remaining colon
and I also have a severe parastomal hernia which
is painful as I believ...
Weight gain after ileostomy?
Can I ask what others experience has been with
weight gain (or lack thereof) following an
I had my Ileostomy coming up to a year ago (it
will be a year in May). This was after suffering
from an acute attack of Severe Ulcerative
Before the illness I was about 75 kgs. I'm 5 ft 9,
so I wasn't a muscle man to start with, but was a
fairly respectable weight.
After the operation and a combination of the
illness, loss of appetite and NHS food I was down
to 55kgs. Not at ...
New with concerns about ileostomy
My doctor, a colorectal surgeon, has recommended a
temporary ileostomy for puborectalis contraction
and constipation that have resisted other
treatment for years. I'm trying to seek out ALL
the information I can beforehand. I want to be
prepared particularly for the smaller details I
should expect. I want as much of the stress and
shock as possible over with while I'm not sick
either from a colon prep or surgical recovery.
I'm sure I'll think of more, but right now I've
got three top concerns...
Surgery to remove rectum, post-ileostomy.
I have to have one last surgery to take out the
rectum (can't leave it due to cancer risk) as I've
decided not to re-attach. Haven't had any issues
since my ileostomy 4 years ago and don't really
want to go through the recovery and possible
complications of re-attachment. The main problem
is that I am healthy and have to go in for surgery
which will make me feel crappy. It's easy to go
in if you're sick because the point is to make you
better. This will make me better in the grander
Flying in the uk with an ileostomy?
What are others experiences of flying in the UK
with an ileostomy?
The specialist assures me it is safe to fly, but
why do I get the feeling you have to have been
there to really know what it's like?
I'm due to fly next month (internal flight) but am
a bit concerned about security checks - presumably
my device will show up on the bodyscanner - am I
then asked to step into a door for further
I have a card from Charter Healthcare explaining
that I wear a device...
Child with ileostomy ?
Anyone on here got a child with an Ileostomy ? My
son is 13 and had his when he was 11. We dont know
any other children with one and we just muddle
along and get on with things. Im worried about his
growth, he is tiny. He is nowhere near puberty and
all his mates are now big strapping youths with
deep voices, spots and attitude ! The doctors
assure us puberty will come but it will be years
behind everyone else. Im also worried about how he
will cope when girlfriends come along and all the
Dumped because of ileostomy
I have just joined this site. Not sure how it
quite works yet.
I have a ileostomy and I am single. When I seem
to meet guys and you tell them you have a
Ileostomy they quickly disappear.
Just wondering if anybody else has this problem?
Help with eating and appliances for a permanent ileostomy
Hello all. I am new to this and would like to
introduce myself and my concerns. I am the
fiancee of a 46 yo man with a permanent ileostomy.
He was diagnosised with colorectal cancer last
Feb. He underwent chemo and radiation to shrink
the rectal tumor, but it was not affective and the
cancer spread everywhere. He had extensive
peritoneal carcenomas. He underwent emergent
surgery in June 2010 for debulking and removal of
the cancer. After a 14 hour surgery they ended up
removing the entire...
Ds, ileostomy and transition to adulthood
Hi I'm new to this forum and I hope you can help.
My son is 21. He has Down syndrome and an
ileostomy. In June he will be graduating from high
school. His future is filled with opportunities
for jobs and community activities. He needs to
learn how to change and patch his wafer, so he can
pursue these. I would like a professional or
paraprofessional to teach him how to manage his
ostomy. The training should be provided by a male,
in a variety of environments so that he learns to
deal with his...
Breast cancer and ileostomy
Hi: I am a 53 year old woman who has had an
ileostomy since January 1996 due to ulcerative
colitis. I haven't had too many problems over the
years expect for a few blockages due to bad food
and taking codeine for a toothache pain. But last
month (October 2010) I was diagnosed with breast
cancer. Thus I have 2 questions: (1) I am
worried about the side-effects of the upcoming
chemo, meds and radiation treatments. Has anyone
else with an ileostomy had breast cancer, and/or
can anyone recommen...
Ileostomy to a j-pouch and reversal
Has anyone had an ileo then gotten a j-pouch made
and been reversed? I have a preop visit with the
surgeon in a few weeks and am pretty nervous about
the coming surgery. I want to know what I am in
for. I'm not thrilled about having an ileo but in
some ways its not so bad
Abs of mashed potato following ileostomy!
Ok, before my op I did not have abs of steel. Had
the mid-life lady body type where every extra
ounce went to the midriff and my activity level
would never give me a six pack. So I was middle
soft with a little muffin top.
But now ... I definitely have abs of mashed
potato. Any other ladies (or guys for that matter)
notice that it seems as if the removal of the
colon left an 'empty' space that is rather foldy
and soft? Kind of like a stuffed toy with some
stuffing removed .
Cute thing .....
Life after an ileostomy...
I am curious, do others with ileostomies catch
colds or stomach bugs easier after you lost your
colons? Do you fatigue easier?
I ask because it seems that ever since I lost my
colon, I get sick much more often.
Just had colostomy converted to ileostomy
Hey, it's Maryland Gal. I had my surgery July
13th. Surgery went well. Took 6 hours because I
had so many adhesions. My surgeon was able to
bring the small bowel through the same hole.
I had many other complications that kept me in the
hospital for 3 1/2 weeks. Had pluracy, a lower
collapsed lung. Then found out I had a blood clot
in my leg and was put on blood thinners. Well
doctors did not know nor did I, I had ulcers. The
first one I was put in the ICU and nearly bled out
and needed 5 ...
Having surgery to convert colostomy to ileostomy. have ?'s
Hi all, I have posted before and I have to have
the rest of my large bowel removed due to a severe
stricture along with severe motility issues which
have caused me to be on TPN and do not allow my
colon to work. I know I have to get this done in
order to get off the TPN and try to lead a more
normal life and be able to eat again. All my
doctors and friends have said I should get this
done, so I will be getting my surgery date when I
see my surgeon on Thursday July 1st. Because I
have had so m...
Colostomy reversal now ileostomy - help!
I had an attempted colostomy reversal, they found
yet another leak and now I have an ileostomy. I
am having trouble getting my bag on before any
output and it's made the skin below my stoma very
red and raw. Anyone have tips or suggestions?
Thanks in advance!
Colostomy verses ileostomy?
Hi, I am new to the site and had a few questions.
I had to have a colostomy just over a year ago due
to a doctor screwing up my back. I have cauda
equine syndrome ( No bladder function and my
nerves to my rectum stopped working) Since the
colostomy I have had two revisions. For some
reason my stoma keeps closing up. The doctor tried
to put a scope through it to see what the problem
was, but they could not even get the scope in an
inch or two. I also have colonic bowel, (very slow
I recently had surgery to remove my entire large
intestine, the surgeon then joined my small bowel
to my rectum. I am trying to balance the
food/liquid problem because my bum is suffering
from trips to the bathroom 8-15 times in a 24 hour
period.....ouch! Can anyone share info on
vitamins/minerals etc that might help replace what
Question about changing an ileostomy appliance
I'm a registered nurse that has just started
working on a general surgery unit. I don't have
that much experience with changing ileostomy
appliances. I had one patient the other night
who's ileo appliance is always leaking. Sometimes
her appliance is changed 1-3 times in a 24 hour
periord. We use eaken to fill in any skin
depression in order to increase the seal... The
problem is that everytime we change her appliance
I run into a lot of problem when trying to clean
peristomal skin and ...
3 months post ileostomy reversal update
I wanted to put a quick update here to let those
interested know how I'm doing since my ileostomy
reversal 3 months ago.
I had good progress for the first 2 months but the
past 3 weeks seem to have gone backwards. I'm
still in a lot of pain and spending too much time
in the bathroom (8 - 12 x daily). I am housebound
all morning and if I need to go out at all, I fast
beforehand. Gas and cramping are a huge problem!
The surgeon is fairly happy with the way things
are going. He told me 2 we...
Diapers for anal leakage?? how long after ileostomy?
I am trying to find out how long everyone had to
wear diapers after their surgeries. my boyfriend
had an ileostomy and is still having issues with
anal leakage. he is still in diapers 8 weeks post
surgery. please help
Cuba & ileostomy
Hi, I am heading to Cuba in 2 weeks and wondering
if anyone travelling has had any problems with
bringing supplies and having to explain your
supplies.....Anybody with any advice or travel
Ileostomy contacts costa blanca
I am considering coming to live in Spain in 2011,
in the region of Cuidad Quesada. I am 72 and had
my stoma since 1988. My question is will I still
receive my prescription items free of charge.
I would like to meet someone preferably a lady
living in that area who I can talk to about
several matters relating to Ileostomy. I shall be
staying in Spain, on holiday from 11th April 2010
and returning to England on 29th April 2010
Greetings! I'm asking this question on behalf of
my husband who has been an ileostomate for 10
months now. While he's adjusted admirably, there
is one issue that is ongoing and causing him quite
a bit of stress.
It seems that everytime he removes a bag in order
to replace it, his stoma will expand. We aren't
sure if it's the air hitting it, or if it's
because he does it immediately after taking a hot
shower. The problem is that once the stoma has
expanded, he must cut a hole in his replaceme...
Colostomia- colostomy /ileostomia - ileostomy
This video will help explain colostomy and
ileostomy surgery. Joy Hooper, RN, CWOCN &
Italo Santana explain the surgery in English and
Spanish. If you have any questions concerning the
information in this video, please contact me or
the United Ostomy Association of America (UOAA).
Well friends once again I'm in need of
information. A little background, two months ago I
had to buy new jeans so I got them a couple of
inches larger than normal, next I put on my braces
to keep my pants from falling to my knees. As i
sit here now, no braces, no belt, top button open.
This started about two weeks ago after getting
some sharp pains above and below the stoma and a
circle about six or seven inches in diameter and
has swollen outward about an inch and a half, hard
to tell. can anyo...
Ileostomy - still have uc in rectal stump - depressed
Just over a month since my perm ileostomy. Have
had moderate to heavy anal discharge and thought
it was the rectum healing/weeping (surgeon left a
rectal stump) or an infection.
Saw surgeon last week ... he's saying it's the UC
in what's left of the rectum .
I see my GI specialist tomorrow.
Darn - I still have to use a heavy menstrual pad
and am back on the Salofalk suppositories. And
I'll still have the unpredicatbility of flares.
Pre-op, my flares were months long.
I was SO s...
Intimacy with ileostomy
I would like to share tips, secrets, anything that
helps intimacy be more alluring to others. Dont
be shy, I need answers.
Hernia prevention & ileostomy appliance support
I'm going blind (and not finding what I know much
be out there) looking at the websites -- so maybe
someone can lead me in the right direction.
I'm interested in getting a support belt. Not one
of the narrow ones that attaches to the pouch and
just holds it down better against your body.
Something wider (hopefully not too cumbersome)
that goes around the body, supports the abdominal
area, and accommodates a vertical ileostomy
I'm fairly active but have never had great abdo...
Ileostomy versus colostomy????
Hi Guys ........
It looks like I will need to make a decision
before long as to whether to have an ileostomy or
a colostomy which I will have to have for the rest
of my life .....(currently have an ileo...) I am
fortunate enough NOT to actually have any 'bowel
problems' per se as do many of you, but wondered
if anyone out there had any experience of having
both? What are the pros and cons, which is the
easiest to manage etc etc.... Also whether or not
to have my rectum removed? How does tha...
Last week i had an ileostomy loop reversal,can anybods help
hi everyone,i recently had my ileostomy loop
refersal after 2 and half years of haveing a
stomer bag i started with a colostomy then i had
an ileostomy,then i had to have my intestine
repaired for it was not possible to have a
reversal due to the scar tissue blocking the
flight path so to speak.last week i had my
ileostomy loop refersal,which at the moment all
seems to be well apart from servere cramps and big
time diorea,which i dont really mind for im glad
that things are in motion,the onl...
Irrigation for ileostomy obstruction (blockage)
Yesterday afternoon, shortly after lunch, I was
surprised by a sudden blockage. I was so busy that
I didn't even realize that I had no output ALL
day. It was 3:00 pm. Cramping, nausea, pain, and
belly distension had me paralyzed in pain.
This was my first obstruction that was not post
operative adhesion related so I was shocked but
I massaged the area. Drank hot tea. Prayed. Cried.
Moaned. Then crawled to the phone, went to the
pantry, grabbed a big syringe that is really
Whats a good diet for a ileostomy?
Hi Iam new here, had my ileostomy a yr ago, I'd
like to know what we can really eat,
does anyone have a good diet to follow.
I love salads but afraid to try them, was
wondering if anyone has, and how it worked
Pregnancy with ileostomy
I'm hoping someone can help me...I've had Crohn's
for many years and had an ileostomy done more than
10 years ago. I've recently had a complete
proctocolectomy and my husband and I are wanting
to start a family. Anyone out there been pregnant?
I've heard that fertility decreases due to the
crohn's and surgery? What can I expect during
pregnancy? Will I be able to care for my stoma
myself?Is there any special needs for extra
nutrients/diet during pregnancy?
Ileostomy with large parastomal hernia
Hello, I'm new to this site so still finding my
way, that is if my memory...what's that! will
allow me to remember where I've been before.
However despite all that I have a question
regarding quite a large parastomal hernia. I
acquired this Ileostomy as a surprise after an
operation on my spine. I was told I developed a
blockage which caused a rupture of the colon. I
did have a good stoma nurse available where I was
living when I had the operation but have since
moved house and the support I hav...
I really need help with ileostomy
Hoping someone out there can give me some words of
wisdom. I had ileostomy done 2 1/2 years ago.
Due to chrones and my colon exploding in seventeen
different biopsied pieces, I had a Very Good
outlook of my surprised surgery after a
colonoscopy, mainly cuz I was no longer in awful
pain 24/7 anylonger. However, my great mood has
slowly turned into a very depressed (even tho I
fight it) and angry mood. I have continuiosly had
leaking problems. I have talked to my dr. and he
sends me to the os...
Rectal constipation with ileostomy
Help! I've had an loop ileostomy for 4 months
(colostomy for 10 months prior to this).
I still have a small amount of faecal matter
passing through my large bowel and due to the
Imodium to slow my bowels done, I am now really
I've tried Fleet Enemas, Microlax, Fleet Mineral
Oil, Cooking Oil and water but nothing is shifting
it and I'm in a lot of pain.
Does anyone have any suggestions?
Liver and ileostomy
i want to know if a ileostomy surgery with the
pass of time affect the liver?
i have a 24 years surgery and now the liver enzyme
are a little be high...thank you bye
Ileostomy and ms
Anyone out there with the strange combinatio of
ileostomy and Multiple Sclerosis. Am I unique?
Does anybody out there have a continent ileostomy?
I had an ileostomy in April 1983, then in October
1987 I had a (BCIR) Barnett Continent Ileostomy!
Does anybody out there have one? I was in
Mississippi and met 2 people; however, I cannot
find them? Freka and John Busan? [/u]