My Ileostomy Reversal Experience
The ileostomy reversal surgery is a highly anticipated part of a rectal cancer patient’s journey. It’s exciting to get rid of the bag, but wondering how your body is …
Welcome to Life as a Cancer Survivor.
Today's video I'm going to cover my most
my ileostomy reversal surgery. So
be prepared there's going to be a lot of
poop talk in this video.
My name is Jelena and at age 34 I was
diagnosed with stage
3 rectal cancer. I had an ileostomy for
over 7 months
after my lower anterior resection, or LAR,
surgery. The LAR surgery it's where part
of your colon and rectum are removed
and the new ends they're sewn together
and you get a temporary ileostomy while
that resected site heals.
An ileostomy is where the end of your
is run out of your abdominal wall to
create a stoma
and your waste exits your body through
there. My ileostomy
was reversed on June 4th 2017 and this
is my story on how that went
how recovery was and a little bit about
how things are today.
I'll also give you some tips on how to
survive those first few days
The first step in getting ready for
surgery is going in for
a Flex Sig, which is short for a flexible
For this procedure they do this to check
and see visually how that resected site
where your colon and rectum were sewn
to see how that's healed. It's
different from a colonoscopy
and that the camera – it only goes part of
the way up your colon
so it just goes up to the site where the
colon and rectum were sewn together
it doesn't go through your entire large
My procedure, it was done at the hospital
by my surgeon
and the prep for it was easy. All I had
I wasn't allowed to eat after midnight,
no drinking after 3:45 a.m,
check-in was at 7:30 a.m, and the
procedure was at 9:00 a.m.
I was knocked out for it and when I woke
up i was told that everything looked
and this test was passed. So this test,
this procedure it was done five weeks
my ileostomy reversal surgery was
Next up was a gastrografin enema test.
Gastrografin is a water-soluble clear
liquid that shows up on x-ray pictures
and this test is done to make sure that
there are no leaks
at that resected site where your colon
and rectum are sewn together.
There was no prep for this procedure
because they're only looking in your
large intestine and since i had the
ileostomy there was no stool in my large
and you're awake for this procedure.
First I had to remove all my clothing
from the waist down and put on a
gown, and while I did that, the tech
she prepared the gastrografin solution.
You lie on your side on a table for this
and the first thing that the tech did
what was basically a deflated
balloon with a tube running through it
up my butt just past my sphincter
muscles and then
inflated that balloon so that the tube
out during the procedure. So that was
not very comfortable. Then came
the gastrografin so there's over one
liter of this
fluid that gets pumped into you slowly
into your large intestine.
So as it's getting pumped in it gets
more and more
uncomfortable the more liquid's in there
and i kind of started cramping a little
bit because of all that liquid being
So once the over one liter of fluid is
then you have to hold it inside of you
and then the tech proceeds to take a
bunch of x-ray pictures of you
laying on your side, turning to the other
side, on your back,
with like your butt up in the air on
your back in like a bridge position.
It was, um, not comfortable.
When she had finished there was a
bathroom connected right to that room
and i pretty much just had to walk like
six feet to get into that bathroom.
So she said that the liquid shouldn't
come out before I get to the bathroom.
Well . . . she lied. As soon as I stood up and
took my first two steps
I could feel some of that liquid
dripping down my leg.
I mean my sphincter muscles haven't been
used in months,
and even if they had been it's really
hard to hold
liquid in, so I just rushed as quickly as
I could to the toilet,
sat down and a bunch of that fluid came
I stayed on the toilet for about 10
minutes because i still felt like there
in there that needed to come out, so
there was another
like round of the liquid coming out. But
nothing else was coming out, so I assumed
all was okay so I got dressed and went
But once I got home there was one more
round of the liquid gushing out of me
and then i was okay for the rest of the
day. Thank goodness I passed the test and
there were no leaks,
so that meant I had the full go-ahead to
get my reversal surgery.
This time i did a little bit of research
ahead of time before going in for my
to learn a little bit more about what I
should expect and
what i should bring to the hospital with
me. I only brought one pair of clothes
because I knew from my previous hospital
visits I wasn't changing out that
hospital gown until it was time for me
to go home.
I did bring a few pairs of underwear
with me, though. I bought some adult
diapers to bring with me,
and some diaper rash cream. I also
learned that the usual criteria
for letting a person go home after their
is they first have to pass gas and then
they have to pass a bowel movement.
So since i knew i wanted to spend as
little time as possible in the hospital,
my goal was to take as few pain
possible, because those pain medications
they constipate you.
So if i was constipated that means that
when my first bowel movement would
happen. My surgery was scheduled for 9 am
on June 5th 2017. My surgeon was also
going to be taking my port out at the
same time during the surgery,
because I was done with treatment and I
was declared that I had no evidence of
so my oncologist said to go on ahead and
get my report removed as well.
The mood was definitely a lot different
for this surgery versus my LAR surgery.
I was excited to go in for this surgery
because i couldn't wait to get that
The couple of weeks leading up to this
surgery, the skin around my stoma was
starting to get really red and irritated
and I just didn't really put a whole lot
of effort into trying to figure out how
to fix it because I knew
that the ileostomy was going to be
reversed. So I just got a prescription
to put on the redness and sucked it up
while I waited for that reversal surgery.
Surgery itself took about two hours and
then I was taken to the post-anesthesia
care unit, also known as the PACU, to wake
before I got sent to my hospital room.
It took me longer to get out of the fog
of anesthesia and it was making me
and apparently I started freaking out
I was really disoriented, but I don't
remember any of this at all.
They didn't give John specific details
as to what I was doing or saying
they just told them that they were going
to hold me in the PACU for a little bit
while they made sure that I was calm
before bringing me up to my room.
I was immediately allowed to start on
the clear liquids diet once I was
up, so that meant it was time to start on
the jello and vegetable broth diet.
I was being given Tylenol to manage my
pain, but the pain was much more
tolerable than with my LAR
surgery. It was only like a two or three
on the pain scale.
Maybe because they just had to sew the
hole in my small intestine up and
basically just shove it back inside of
me, and then take my port out.
The hole where they put the stoma back
they didn't even sew that shut they just
packed it with gauze and then loosely
covered it with a bandage.
the port scar is pretty gnarly looking
as you can see from this picture
I thought it looked like I had lips on
my chest and, even to this
day, the scar is still pretty big and
noticeable. Let me show you.
Here's what it looks like.
I was able to move around in my bed and
even get up and walk on that first
in the evening. I was really pleased with
how much easier this surgery was
and hoped that that meant that I was
going to be able to get home much faster.
The next morning around 5 am I passed my
first fart out of my butt
in months. Passing gas is that first step
in showing that your bowels are waking
working, so I was upgraded to
the full liquids diet for breakfast, and
then got moved up to the soft foods diet
I spent the day just walking the halls
is supposed to wake your bowels up
faster than just lying in bed.
Plus since I wasn't really in a whole
lot of pain, I didn't want to just lay in
bed anyway there wasn't anything else to
do other than watch tv
or walk. I also started having some mucus
leak out of me
and got a spot or two on the chuck's pad
on my bed and messed up one of my pairs
So then I switched over to wearing the
Wednesday morning I had my first bowel
movement and it seemed normal.
Buuut in anticipation of the rest not
being very normal coming very soon,
I made sure to put some diaper rash
cream on my butt to protect it.
Having a bowel movement meant that I
could be discharged, so I was super
excited about that.
To prep me for going home, first they
took the gauze out
of my stoma hole wound at about 7:30 a.m
then by 9 a.m
it was completely closed up already. It
was really weird.
Here's the picture progression. I believe
they leave it open
and let it close itself up because if
there's any little traces of bacteria
they want it open
so that as it closes up it kind of
pushes that out
instead of having it sealed and then or
having it sewn shut and the bacteria is
My surgeon's directions for eating once
I got home was to just eat like
normal, no diet restrictions at all. My
follow-up appointment with him was
two weeks from that discharge date
and he said that he wanted to give my
bowels time to adjust
and regulate to being normal again and
didn't want me taking any kind of
medications to regulate them
for at least a month. Once I got home
that's when the literal poop storm began
and all hell broke loose.
Anytime I stood up, it felt like all the
waste inside of me just
rushed down immediately and I had to
hurry as fast as I could to get to the
bathroom to let it out.
Once I was on the toilet though, not a
whole lot came out.
It felt like more needed to come out but
nothing ever did.
Every bowel movement was a six on the
If you're unfamiliar with the Bristol
scale, it's a chart that
rates your bowel movements. Let me show
you the chart. A four
is the normal that you want to strive
for. One and two on the scale mean that
a six or a seven are considered diarrhea.
The first few days were spent
just lying around on the couch because
anytime I stood up
I had that feeling that everything in me
was rushing out and I would have to go
to the bathroom.
Even when I was lying on the couch
though all day I still had
almost a constant feeling that I needed
to go and pass a bowel movement.
I tried to hold it for as long as I
could before going to the bathroom
um in an attempt to try and like retrain
so that they weren't sending me those
signals that I needed to go
constantly. This wasn't anything that a
doctor told me it was just something
that in my head I thought maybe would help.
Instead of wearing an adult diaper I
switched to wearing pads and just
to the back end of my underwear to catch
I never had any like full out accidents
so the pads were plenty good enough to
just catch the little bit that would
leak out occasionally.
I didn't count how many times I was
going to the bathroom those first couple
But by Saturday I was going so much
I decided that I needed to track this so
that I had
actual data to give my doctor when I
went in for my follow-up appointment
rather than just saying "I'm going all
the time," I'll have an, I would have an
exact number to tell him
I went this many times on these days.
I downloaded the My Symptoms tracker
onto my phone
and in that you can keep track of your
food, medications that you take,
uh you can also track your bowel
movements, where they fell on the Bristol
also even track how urgent those
movements are on a scale from zero to
Before I go through that tracker with
you let me quickly tell you that before
I would usually have one bowel movement
a day, it would be a four on that Bristol
and I'd be in and out of the bathroom
within five minutes.
So here's what Saturday looked like. I
had a total of nine bowel movements
but I'm almost positive that I didn't
start tracking them
until after lunch so I'm sure there was
at least one or two before that very
first one right before lunchtime.
As you can see, the urgency was pretty
all afternoon and into the evening. The
bathroom visits did not let
up overnight on Saturday night so as you
I didn't really get a whole lot of sleep
You know how much your butt hurts after
just like one or two episodes of
Well imagine that, but going like 10
times a day. That's basically what I
My butt was getting really raw and it
every time that I was going even though
I was putting diaper rash cream on
after every visit to the bathroom. I felt
like I basically lived on the toilet on
with a total of 17 visits, and almost all
of them were urgent
but it did let up for Sunday night so
that I could get some sleep.
Sunday was also the first day that I saw
first fives on the Bristol scale, so we
had moved from a six to a five
so there was a little bit of good news
Monday I had 12 bowel movements that
were pretty much looking like peas and
and my butt was so raw the diaper rash
cream it wasn't helping at all anymore.
I used some Dermoplast on my butt to try
and cool it off a little bit
but since I was going to the bathroom
basically like every hour
it wasn't really working for very long.
Tuesday I started the day with
two bowel movements before breakfast,
another four before
lunch, and my butt it just it couldn't
so I turned to the internet to see if I
could get any ideas
of anything that I could do at home that
didn't involve medication to help me.
The overall consensus was that
my surgeon was crazy for telling me to
just eat a normal diet
and that most other people had been told
to eat a low-residue diet when they came
from their ileostomy reversal surgery. So
what exactly is the low-residue diet?
It basically limits the amount of high
fiber foods that you eat
such as like whole grain cereals, whole
nuts, seeds, raw fruits, raw veggies
with the goal of you having fewer bowel
movements and smaller bowel movements.
What you want to do is look for foods
that have one gram of fiber
or less per serving. This diet is only
meant to be followed temporarily
because it's really hard to meet all
your dietary needs on it.
So what foods can you eat?
white pasta, refined cereals, canned
fruits and vegetables,
milk and foods made from milk like
cheese and yogurt,
tender meats, eggs, tofu,
butter, margarine, and dressings without
You want to make sure that the foods
that you cook they're soft and they're
And you also want to make sure that you
drink plenty of water so that you don't
I sent my parents to the grocery store
Tuesday afternoon with a list of all of
the stuff on the low-residue diet
so that they could buy me stuff and I
could get started with this diet
ASAP. It did help some because Wednesday
and Thursday I only had eight trips to
the bathroom on each day
and I was brave enough to go outside and
walk up and down my street so that I was
still close by
in case I did get an urgent feeling to
go I was close enough to a toilet.
Then Thursday I started having poop that
was a number four on the Bristol scale.
Friday the urgency of my visits started
going down by a lot too.
There were still some that were urgent
but I felt like I was finally making
Saturday the number of visits went back
up to 16,
but they were pretty much all a number
four on the Bristol scale,
and I believe part of the reason I went
so many times was because
when I was in the bathroom just to
urinate I would also
just pass a little bit of stool also.
Then on Monday I started to get nervous
about having to go to my surgeon the
next day for my follow-up appointment.
The drive to his office was about 20
minutes and I was really nervous
about making it to and from his office
without pooping myself.
Then Tuesday came and I surprised myself
and made it to and from the office
without an accident.
During the appointment, my surgeon looked
at the ileostomy wound site and said
everything looked like it was healing
Then he asked how my bathroom visits
I told him it was really bad and painful
and that I started a low-residue diet
the week before
to try and slow things down and to
let my burning butt heal. He got mad at
me for restricting my diet
and said he would start me on some
medications so that I could get back to
eating a normal diet.
He said that I could take Metamucil to
bulk up my stools
and I could take one Imodium daily to
slow them down.
But he didn't tell me to avoid taking
them at the same time.
After a few weeks of taking both of them
I found out
that you're not supposed to take any
medications within two hours of
taking the Metamucil because the
Metamucil can reduce the efficacy
of those medications. I took them both
together that afternoon for the first
and I saw an immediate improvement in
of my bathroom visits. I was still going
a lot but by the next day
I no longer had diarrhea and all of my
bowel movements were fours or fives
and I even had a three in there.
Wednesday night my sister and her
husband flew into town to visit
and by Thursday I was out on the town
taking them around to
all the touristy spots. I had nine bowel
movements that day,
but they looked normal and the urgency
didn't disrupt any of our activities
Then Sunday I was able to ride in the
car for over an hour to take our
daughter, Maelle to an overnight camp
and I survived the ride back home
feeling like I needed to go urgently and
without having an accident.
Exactly three weeks from my surgery day
I felt like I had improved enough that I
no longer needed to track my bowel
I wasn't completely back to my
but my butt was healing, it wasn't
and I was confident enough to leave the
house without being afraid of having an
accident. Exactly eight weeks after my
I participated in Fight Colorectal
Cancer's Climb for a Cure
and hiked for over eight hours on a
mountain and only pooped once during
that entire hike.
That was a HUGE victory for me
only having gone to the bathroom one
time in eight hours.
Click on that like button down there for
me to celebrate that and the fact that
my butt was no longer burning.
There would still be bad days but I
wasn't confined to a couch anymore
and I felt like I had more control over
when I actually needed to go.
Have more questions about how the
reversal recovery process goes?
Catch me live on YouTube on Thursday,
at 12 p.m mountain time. I'll be on for
about an hour
answering all the questions that you
have about the ileostomy reversal
and how things are going now. Make sure
that you've clicked on the subscribe
button and the notifications you're
getting all of them
so you'll be notified when I do go live
and when all my future videos are posted.
I hope to see a bunch of you on Thursday
when I go live.
Thank you for watching.