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181
in the UK between 1996 and 2008 [11]. In other reports the failure rate was 6–9%
after 5years and 13–19% after 10 years [15, 17]. In a recent French study patients
who had their colectomy due to refractory ulcerative colitis had a signicantly
worse outcome compared with those who had their colectomy due to acute severe
colitis, a hazard ratio of 1.6 having a failure of their IRA [59]. In a similar vein
patients naïve to immunomodulators and biologicals before colectomy had a better
long term outcome of IRA.Patients with immunomodulators or biologicals had a
hazard ratio of failure of 1.3 whereas those with both therapies did even worse with
a hazard ration of 2.9 for IRA failure [59].
A possible advantage with the ileorectal anastomosis, if it fails or dysplasia
develops, is the chance of performing a proctectomy with a pelvic pouch (Fig.14.3).
About 36–70% of the ulcerative colitis patients with a failed ileorectal anastomosis
received a pelvic pouch later on in life [17, 31]. A recent paper on the outcome of
such subsequent pelvic pouch found no worse outcome compared with a primary
pelvic pouch in regards to failure [60]. There is however limited knowledge regard-
ing the functional outcomes after a subsequent pelvic pouch in ulcerative colitis but
in FAP the functional outcome was no worse after a subsequent pelvic pouch com-
pared with a primary [61]. There is of course the possibility of performing a redo of
a pelvic pouch the success rates are far from excellent, especially when performed
for septic complications, and with much worse function compared with primary
pelvic pouches [58, 62].
Comparing the outcomes of ileorectal anastomosis in FAP ulcerative colitis may
not always be effective as the latter has an inherent risk of proctitis. However, a
meta-analysis comparing pelvic pouch in ulcerative colitis and FAP showed the risk
for pouchitis to be higher in ulcerative colitis as well as a small increased stool fre-
quency but with otherwise comparable outcomes in function and failure as in those
with FAP [63].
14.8 Summary
Colectomy, despite the pharmaceutical evolution in inammatory bowel disease
still a quite frequent procedure in the lifetime of patients with ulcerative colitis.
As medications have different advantages and disadvantages, so have surgical
reconstructive methods after a colectomy. The use of ileorectal anastomosis in FAP
has been well characterized but the use in ulcerative colitis has been less well
described. Despite the lack of complete knowledge recent data have shown that the
ileorectal anastomosis, in combination with topical treatment and surveillance, is a
safe procedure in ulcerative colitis and with a functional outcome and failure rate
well in line with the pelvic pouch. In parts of the world the ileorectal anastomosis
has been just as common as the pelvic pouch. Of 994 ulcerative colitis patients
undergoing colectomy in Sweden during the period 2000–2010 the reconstructive
method was ileorectal anastomosis in 478 cases (48.0%), pelvic pouch in 497
cases (50.0%) and the remaining 19 patients was reconstructed with a continent
14 The Ileorectal Anastomosis inUlcerative Colitis
182
ileostomy [64]. A randomized controlled trial in Sweden, randomizing between ileo-
rectal anastomosis and pelvic pouch as primary reconstruction in eligible patients
after colectomy for ulcerative colitis, was not able to enroll patients due to strong
patient opinions after receiving information from surgeons regarding the possible
advantages and disadvantages of the two procedures. In Sweden the use of ileorectal
anastomosis has mainly been offered to patients with a distensible rectum and good
response to topical 5-ASA therapy after subtotal colectomy and without a history of
colorectal cancer or high grade dysplasia [17]. Further, patients with primary scle-
rosing cholangitis or a family history of colorectal cancer are less suitable for ileo-
rectal anastomosis [17, 49, 54, 55], both due to increased risk of cancer and in the
former case as well as poor function [65]. Similarly patients with acute severe colitis
naïve to more potent medical therapy seems better suited than those with refractory
colitis and previous medication with immunomodulators and/or biologicals [59].
Young patients on the other hand could have a favorable outcome with an ileo-
rectal anastomosis, possibly as a temporary solution, with regard to fecundity and
sexual function. Furthermore, patients with an onset of the late disease in life and/
or a short history of colitis could be suitable candidates for ileorectal anastomosis.
The use of ileorectal anastomosis in ulcerative colitis is safe and with acceptable
outcomes related to function and risk of failure. It can, in selected cases be used as
a permanent solution and in other cases, similar to FAP, as a temporary solution
resorting to proctectomy and pelvic pouch later in life. With the use of ileorectal
anastomosis as a complement to the continent ileostomy and the ileal pouch anal
anastomosis we can increase the choices for patients needing colectomy. Patients
with UC or FAP should be introduced to the different choices, their advantages as
well as their limitations.
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14 The Ileorectal Anastomosis inUlcerative Colitis
187© Springer International Publishing AG, part of Springer Nature 2019
J. Warusavitarne, Z. Perry-Woodford (eds.), The Ileoanal Pouch,
https://doi.org/10.1007/978-3-319-94385-5_15
Chapter 15
The Lived Experience
ScottClifford, JuliaSpanswick, KennyGraham, andZarahPerry-Woodford
Abstract A good outcome for the patient is, of course, one of the most desired aims
when choosing to undergo ileal pouch surgery. Whilst an ileal pouch does not offer a
return to normal bowel function, and is not without risk, it does offer many people an
opportunity to return to life and the things they enjoy- after a period of illness or per-
haps to mitigate further health complications which were previously invisible. Where
a person is suitable for an ileal pouch they may opt for this as their surgical preference
because it offers them not only an alternative to living with a stoma but a continent
solution giving greater control over their bowel function, when compared to a stoma.
Keywords Patient experience · Personal journey · Patient outcomes · Support
networks · Quality of life · Emotional considerations · The ileostomy and internal
pouch support group (IA)
15.1 Introduction
The quality of life following ileoanal pouch surgery will however differ from person
to person. Whilst success may be gauged by pouch function it is also important to
remember that bowel surgery such as this can have an immeasurable effect on a
person who may experience strong emotions before, during and after surgery.
Emotions such as anger, frustration, embarrassment, fear or even relief, at the
thought of ‘being different’ or the journey they have been through and the uncer-
tainty of the one ahead. Dealing with these emotions can be difcult for some and
whilst a patient will rely on their healthcare team for support, some feel as though
you can only truly understand through personal experience.
S. Clifford · J. Spanswick · K. Graham
The Ileostomy and Internal Pouch Support Group (IA), National Ofce, Peverill House,
Ballyclare, UK
Z. Perry-Woodford (
*)
St. Mark’s Hospital, Harrow, UK
e-mail: zarah.perry-woodford@nhs.net
188
Of course not all outcomes are desirable and it is to be recognised that a percent-
age of pouches fail or do not function as intended, leaving a person with a poor
experience which can impact their quality of life. Research continues to record
patient experiences both in the short and long term following ileal pouch surgery
and patient outcomes remain an important and decisive factor when a person is
considering which route to take.
15.2 IA (The Ileostomy andInternal Pouch Support Group)
In 1956, IA (Ileostomy Association) was established and began supporting people
living with an ileostomy. Through collaboration between patient and professional
IA developed a network of support groups throughout the UK and Ireland. Using
the experiences of others already living with an ileostomy, IA’s visiting service
quickly grew. Matching visitor to patient in terms of gender, age and lifestyle, IA
found through experience that an IA visitor could help a person to move forward
after surgery, either by offering practical day-to-day tips, or just talking as someone
who had been through a similar experience.
In 1993, IA (The ileostomy and internal pouch Support Group) extended support
to people living with an ileal pouch and now has a team of people solely represent-
ing the interests of those living with an ileal pouch.
With the important role that patient experience plays in determining outcome
and the benets that talking to someone who has been through a similar experi-
ence can offer, Julia and Kenny share their experience of living with debilitating
illness leading to life with a stoma before surgery for an ileal pouch. Offering a
view from both a male and female perspective, their journeys leading to pouch
surgery are very different but address some of the important considerations that
many are faced with when having bowel surgery; relationships, marriage, having
a family and moving forward with pouch surgery knowing that uncertainty lies
ahead.
15.3 Julia’s Story
At 25, Julia started having problems with diarrhoea and blood in her stools; she was
diagnosed with ulcerative colitis.
For 4years she struggled with the disease- on and off steroid and other medica-
tion, spending periods of time in hospital to rest the bowel. As the number of stays
increased so did the discussion around removal of her bowel. As time progressed
she grew weaker and so did the number of visits to the toilet; Julia was now averag-
ing 30 trips a day each time losing blood with each motion.
At 29 her health had deteriorated. She was put onto intravenous nutrition but was
told that her colon had to be removed to save her life.
S. Clifford et al.
189
Devastated at the news that her colon was to be removed and that she would need
an ileostomy, Julia told her ancé how she would understand if he didn’t want to
stay with her. Julia felt she would be left looking like a freak. Looking back after-
wards it seemed a crazy way to feel, but on the face of it, faced with the reality of
surgery, it was how she felt. In the cold light of day, Julia knew she was losing her
battle; attached to machines in hospital with her hair was falling out she knew one
thing for certain. She didn’t want to die.
Julia’s ancé was totally supportive and didn’t care about the stoma. He just
wanted her alive and in the best possible health so that she could walk down the
aisle 9months later– the wedding was already booked and he was determined it
was going ahead!
Surgery quickly followed. Julia was given blood transfusions and vitamin injec-
tions in the meantime to try and build her up for surgery. On the day of surgery the
stoma position was marked and down she went.
During her recovery after coming out of surgery it was her ancé who saw my
stoma rst. Julia wasn’t interested in looking at it, and recalls her words, “I don’t
want it, so I don’t want to look at!”
It was suggested that Julia name her stoma, which some do after surgery as a way
of helping with acceptance. She did think of one name for her stoma but it wasn’t
something welcoming or polite!
As time progressed in hospital she began to look at her stoma and was amazed at
how it moved on its own! Eventually, with her thoughts together, she realised that
surgery had saved her life, and that without ‘Ruby’, as she had now named her
stoma, she wouldn’t have made it.
Fast forward 9months, Julia’s hair had started to grow back, the big day had
arrived and her outlook had changed dramatically. She was full of life and loving it.
On her honeymoon, she was parascending off the back of a speed boat in Mauritius
in a bikini (with a swim skirt) living life to the full and loved having control, which
she hadn’t had for a very long time when living with ulcerative colitis.
She ate everything and made sure she chewed her food well. On one occasion her
stoma was blocked, caused by apple peel, but she carefully extracted the offending
peel from her stoma.
With her rectum still in place, she continued to experience symptoms of colitis,
and used suppositories to keep it calm. Julia’s surgeon was keen for her to consider
ileal pouch surgery but even in the short time with a stoma she was uncertain. Julia’s
family thought she was mad not to even consider getting rid of the bag, but ulti-
mately it was her decision. Following discussions with her husband, they came to
the conclusion that she had nothing to lose. Had pouch surgery been unsuccessful,
at least she would know what life was like living with a stoma. Julia was now in a
much stronger position compared to her previous surgery and felt her recovery
would be much quicker.
Ileal pouch surgery was performed 1year after losing her colon and she was
given a loop stoma so the newly formed pouch could rest before being connected.
Julia’s experience with a loop stoma was, in her words, a nightmare and she suffered
terrible burns to the skin around the stoma site, as it was a lot closer to her skin. On
15 The Lived Experience
190
one occasion she recalls standing in the shower without a bag on letting warm water
fall onto her stoma for relief, as she’d struggled to get a bag on. Thankfully her
specialist nurse sorted out a bag for her to wear which helped tremendously, but
after 3months with the loop stoma she’d had enough and was pleased to welcome
further surgery to close the loop stoma.
Early days with an ileal pouch were difcult for Julia. The frequency of trips to
the toilet increased and were reminiscent of her days with colitis. Her bottom was
sore from the frequency as it wasn’t used to being wiped. Julia found comfort in
Sudocrem which soothed the soreness and quickly became her friend! To increase
her level of control in the pouch each time Julia had the urge to empty her pouch,
she continued to hold her sphincter muscles in an attempt to train her pouch- and it
worked. Julia is now emptying her pouch around 2–3 times a day, she rarely gets up
during the night to empty and doesn’t experience any leaks from the pouch. After
taking advice from her surgical team, she started to regain her tness gradually and
undertook Pilates and other forms of exercise.
Throughout all this, Julia had one ambition. She wanted to become a mother and
was unsure how her body would manage. After discussion with her surgeon, Julia
started trying for a baby, and 8months after surgery, she was pregnant. She felt so
healthy. She had a great pregnancy although towards the end emptying the pouch
became more difcult but her obstetrician kept a very close eye on progress, given
the risk of complications.
It was decided that Julia would give birth by Caesarean section at 38weeks to
avoid any problems with the pouch and avoid damage to her sphincter muscles,
leading to leakage or incontinence. During the birth, Julia’s surgeon was on hand to
check the pouch and ensure no damage had been sustained. Baby Isabella was born
in the November and two and a half years later, Harry was born, again at 38weeks
by Caesarean section. Julia’s second pregnancy was problem free.
In her own words, Julia describers her pouch as ‘terric’ and she has great con-
trol. Although she has experienced narrowing in the end of her pouch and has had it
stretched twice she now uses a Hegar dilator, under guidance from her medical
team, twice a week to stop any future narrowing.
Julia is also no stranger to obstructions, caused by adhesions. After one surgery
she was warned that she might have to return to living with a stoma and recalls what
a welcome relief it was to wake up from surgery and nd her pouch still intact.
Now following a low bre and low residue diet after guidance from her medical
team, she is grateful to have been ‘obstruction-free’ for a number of years now. It
might not be for everyone but the measure of success living with an ileal pouch is a
very individual thing and Julia feels a small price to pay to keep everything working
ne.
Julia undertakes an exercise regime which includes bouncing up and down on a
mini trampoline, but doesn’t suffer any leaks. With regular Pilate’s classes, Julia is
also able to keep her core and mind strong.
Understandably nobody wants to have bowel surgery but Julia feels it has made
her a stronger person. In the early days IA supported Julia through its visiting ser-
vice and now, using her own experiences, Julia is now a visitor for IA herself.
S. Clifford et al.
191
15.4 Kenny’s Story
In comparison to Julia, Kenny’s experience is very different. His rst experience of
illness was back in 1991, just a few months after getting married. After falling
unwell one evening and suffering violent sickness every hour or so, Kenny pre-
sented himself to the accident and emergency department. Following what was
diagnosed as gastroenteritis, Kenny was sent home to drink plenty of uids to
recover.
This proved to be a turning point for his health and he started to notice an increase
in trips to the toilet. His initial diagnosis was IBS and so on and off for the next 11
or 12 years, Kenny enjoyed periods of good health intertwined with what he
describes as ‘bowel problems.’
One particularly bad episode led to him being hospitalised in 2003 and a diagno-
sis of ulcerative colitis. Nine years followed, most it being good and only an occa-
sional are up where intravenous steroids quickly brought the inammation under
control. One particularly bad episode however, in 2012, was not so easy to manage
and so surgery was recommended to avoid the bowel rupturing. Kenny recalls being
left with very mixed emotions when being told this news. On one hand he was fear-
ful of having surgery yet on the other he wondered if this was a path which would
lead him to a life free from bowel problems.
Surgery was a success and despite having an ileostomy, Kenny’s attitude was one
of positivity at his newly found freedom to do what he wanted and when he wanted
to do it. He’d already decided that further surgery to have an ileal pouch formed was
what he wanted but for the time being he was in charge and was going to make the
most of it! Kenny described it as long journey with a few low points but a journey
that he was determined to win.
Away from his health issues Kenny has a great love of the countryside and living
in Scotland has afforded him access to some of the most amazing scenery to be
found in the world. He walked The West Highland Way (a 96 mile walk through the
Highlands) with friends in 2002, just a year or so prior to being diagnosed with
ulcerative colitis. It opened his eyes to some amazing scenery, particularly so when
walking through Glencoe.
Following surgery in 2012, Kenny started climbing mountains again and com-
pleted several Munros (a Scottish mountain in excess of 3000ft) as well as walking
numerous other smaller hills and level walks.
His other main passion has always been music and has always enjoyed listening
to artists such as Queen, Marillion and Pink Floyd to name a few of his favourites.
With a new lease of life he felt more condent to travel both throughout the UK and
Europe to enjoy some of his favourite artists.
Kenny has always known that further surgery was planned although as time
passed his enthusiasm for having pouch surgery dwindled slightly since being free
of colitis. In February 2016 however his ileal pouch was formed and he remained
with a covering stoma. Surgery had taken over 6h due to adhesions and his ensuing
recovery was longer than anticipated. Two unfortunate bouts of paralytic ileus on
15 The Lived Experience