Patient-led Analysis of Inflammatory Bowel Disease: Defining an Equitable

Approach towards Patient-centric IBD care

Molly J Halligan, Aerin E Thompson, Destiny Docherty, Patricia Kelly, Emma Pryde,
Crohn’s and Colitis UK, Rebecca Hall and Gwo-tzer Ho

Institute of Regeneration and Repair, University of Edinburgh; School of Infection and

Immunity, University of Glasgow.

Short title: A Patient-led Narrative of Inflammatory Bowel Disease and Wellbeing

Corresponding author: Miss Molly Halligan

Institute of Regeneration and Repair
University of Edinburgh
4-5, Little France Drive
Edinburgh EH16 4UU

Professor Gwo-Tzer Ho
Gut Research Group
School of Infection and Immunity
University of Glasgow
120 University Avenue
Glasgow G12 8QQ

Email: [email protected]/[email protected]

Keywords: IBD, PROs, wellbeing, PPIE, patient involvement

Introduction 3

Methodology 5

Considerations and Risks 8

Findings 10

Quality of Life 10

Cost of and access to care 12

What does 'remission' mean 14

Mental Health 16

Extraintestinal Manifestations of IBD symptoms 18

Impact of Additional Conditions 20

Awareness and knowledge about IBD 21

Self-management of IBD 24

Women’s Health and Reproduction 26

Exhaustion and Fatigue 27

Body Image 29

Experience with Stomas 30

Age 32

Discussion 35

Conclusion 1

References 2
Introduction

This paper explores the role of the ‘patient’ in delivering research related to wellbeing
living with Inflammatory Bowel Disease (IBD) beyond clinical results. The following paper
has been written from the perspective of people with lived experience of IBD, with edits
from clinical researchers.

The traditional doctor-patient relationship has evolved overtime to become more patient-
centric and collaborative in relation to care. Particularly with IBD, there has been a shift
to understand experience beyond inflammatory markers (bowel frequency, calprotectin
tests, and blood samples). Healthcare professionals, and more specifically IBD clinicians,
now want to know about fatigue levels, daily stresses, and how a patient personally feels
their IBD is being managed. Alongside this, patients are becoming increasingly
knowledgeable about their condition often through information online, networking with
other IBD patients or joining support groups, and participating in research opportunities.
These patient-centric interactions are increasingly being transferred to clinical research,
which seeks to combine a more holistic approach to understanding a topic area.

Public Patient Involvement (PPI) groups are often formed to fully inform this more rounded
approach to care and research. PPI groups are where patients, members of the public
and researchers or clinicians co-produce solutions and outputs to improve services and
allow patients to be more involved in decision making and developments related to their
care. PPI groups often exist in charitable organisations, such as Crohn’s and Colitis UK
(CCUK) and the James-Lind alliance but are now more frequently embedded into
research facilities or specific clinical research groups.

PPI groups are routinely asked for their invaluable insights in the design or development
stages of clinical research, such as reviewing participation sheets or final research
papers, but in analysis and writing up results they often assume a less dominant role.
This is primarily due to the technical knowledge that is often required to analyse scientific
or specialised information. However, as research continually focuses on and values the
patient’s perspective, outputs are no longer restricted to understanding clinical results,
such as immune-cell function or biomarkers. Instead, responses from patients, provided
in their own words, can be analysed alongside and aid a deeper understanding of clinical
results.

To analyse these patient comments, researchers must have a depth of understanding of

the key issues faced by their patient group to avoid misinterpretation or researcher bias.
Where the researcher does not have direct experience of the topic area, important details
may have been removed or diluted in the final output. This is where PPI group members
with lived experience can provide invaluable knowledge in the analysis and write-up of
the results but are often underutilised. This paper presents the analysis and write-up of
one free-text survey question led by members of a PPI group.

This paper will explore a patient-dominant model and approach to research: where
patients lead in defining the topic areas, setting the agenda, and communicate information
to the target population, firstly, the IBD population and secondly, clinicians and
researchers.

The aims of this paper are to:

1. Understand the priorities around research and wellbeing from the perspective of
survey respondents and the PPI group.

2. Understand how patients analyse, present and communicate patient reported

concerns of wellbeing and experience with IBD.

3. Understand how to make this process more transferrable for future projects
(specifically, how to make this appealing to clinical researchers).

Ultimately, this paper seeks to explore the value of the patient voice in understanding and
analysing experiences of IBD in relation to Wellbeing.
Methodology

The process for this paper began with the MUSIC IBD study, a clinical study that aimed
to look at Mitochondrial DAMPs as mechanistic biomarkers of gut mucosal inflammation
in adults and children. This study led to the development of a PPI group, whose role was
primarily to review materials for this clinical work to ensure they were accessible to an
IBD audience. The role of the PPI group evolved beyond this and began to include
discussions with researchers and clinicians on wellbeing and the wide variation of
experiences felt by IBD patients, two aspects often difficult to capture in clinical research.
From these discussions, it was clear that there were differences in patient’s accounts of
their own wellbeing in comparison to what their clinical results would report.

The MUSIC IBD clinical team ran a Wellbeing Survey to compare patient-reported
outcomes (PROs) of people with IBD to those without this condition. The survey captured
information from over 1,375 IBD patients from two time points (January - March and June
- September 2023). This study included 40 closed questions, where respondents were
asked about bowel habits, fatigue, mental health and general wellbeing. Feedback was
incorporated from the PPI group and led to additional questions, for instance about stoma
bags and menstruation. At the end of the Wellbeing survey, respondents were asked
whether they had ‘any further comments that you feel are important and have not been
addressed?’. This resulted in 415 free-text comments from respondents with IBD.

Most respondents to the survey answered this question by sharing insights into their
experiences of living with IBD to express what was important to them, often providing
more detailed context to the closed questions in the survey. As the PPI group, clinicians
and researchers discussed a few of the free-text responses, it became evident that the
invaluable insight of PPI members with lived experience of IBD was strengthening the
interpretation of these comments. These PPI members were then given the
opportunity to lead on the analysis and write-up of the free text responses.

As well as their experience of IBD, the PPI representatives brought a range of skills from
their academic and creative backgrounds. MH has skills in social research and qualitative
analysis, so agreed to lead the analysis of the free text comments and the development
of this patient-led paper. DD was an undergraduate student studying pharmacology and
undertaking an inflammation-based honours project. EP is a musician and a Patient
Representative and Crohn's and Colitis UK Research Champion. AT is a PhD student in
immunology and inflammation, and a rowing athlete. TK a PhD student in gut health and
analytical chemistry as well as a CCUK rep.

The following approach was agreed and carried out by the PPI group:

a) Analysis: High-level topic analysis was conducted by MH to draw out main priority
topic areas for the survey respondents with IBD using colour coding in Excel.
These initial topic areas were then reviewed by other members of the PPI group
and used to guide the structure of the paper.

b) Topic Areas: An initial meeting was set up for the PPI group to discuss inclusion
and exclusion of topic areas. The PPI group agreed that representation of all
topics, even those where only a few survey respondents mentioned it’s importance
(e.g. age), should be considered to capture the variation of experience with IBD. It
was agreed that PPI members would lead on individual topic areas to encourage
collective leadership and result in a well-rounded paper informed by multiple
perspectives. Each PPI member chose their top 3-5 from the list of topic areas and
MH allocated roughly three topics per person to lead on.

c) Discussion: It was agreed that the PPI group would discuss each topic area
together over regular Teams calls (20 minutes per topic). Originally, it was thought
that discussions of topic areas would take place over two or three meetings,
however it became apparent that after the first meeting more time would be
needed. Seven meetings were held to discuss themes. The discussions would
particularly focus on why this topic may have been important for survey
respondents and the PPI groups’ similarities and differences in experience to
expand on the topic area further. PPI members would explore the free text
comments relevant to their topic, select a few that resonated with them or made
them reflect differently on their experience, and bring their initial thoughts to the
meeting. The lead would then encourage others to share their experiences or
 thoughts on the topic. The lead would take notes throughout the meeting, which
would be used to guide their write up of the topic for the paper.

d) Writing: It was agreed that PPI members would write up their own topic for the
report. MH shared resources on writing styles but asked the PPI group to explore
their topic areas freely to allow the papers narrative to develop naturally. The PPI
group worked from a shared google word document. To utilise the wide skill set of
the PPI group, PPI members were encouraged to use any additional sources they
felt were relevant to develop their topic (e.g., including literature or sources from
journals or charities). As the paper developed it became clear that the overall style
of writing was academic, reflecting the PPI members who came from a scientific
academic background. This presented challenges for PPI members who were less
familiar with this style and engaging with scientific journals or jargon. After
producing an initial draft, the approach was adjusted and individuals with less
familiarity with academic writing took on a more review-oriented role, providing
feedback and further input to their sections as they were refined. As the process
slowed and fewer contributions were made, MH then reviewed the paper and
streamlined the narrative as well as drafting other sections outside of the results.
The final version was peer reviewed by the PPI group before being shared and
reviewed by the clinical research team.

e) Reflection: To understand how this process could be made more transferrable for
future projects, the PPI group held a reflection section after writing the first draft.
Benefits of the process were discussed, such as the opportunity to lead topic
areas, the number and length of meetings to discuss topic areas (although
frequency may need to be adapted depending on the groups preferences), the
opportunity to learn from other experiences, being able to delve into the
complexities of each topic area, and give a voice to the respondents from the
survey. Reflections on how to make the process smoother included delegating
tasks based on skill sets, creation of a template with resources to guide clear
communication, and more focus on the impact of the work earlier on in the process.
The group also reflected on being entirely patient led for the discussion and writing
 process. All members enjoyed that discussions were only attended by the PPI
members who had IBD. Some members felt that additional support may have been
beneficial during the writing process, however most liked the freedom to initially
write without clinical input.

Considerations and Risks

By having multiple contributors involved in the process, the PPI group developed a paper
that explores a deeper understanding of certain aspects of IBD and wellbeing as a patient
that might not have been possible if interpretation and analysis was conducted by clinical
researchers without IBD. However, the 400+ free text comments and the experiences
shared by the PPI group highlight that no two experiences of IBD are the same and
therefore, the experiences discussed in this paper may not be representative of all people
with IBD.

Two potential risks of developing a patient-led paper are that some of the participants
may become unwell during the process due to the unpredictable nature of IBD or be
unable to attend all discussions due to busy schedules. To mitigate this a number of
actions were taken: 1) having MH take notes during every discussion as a back-up copy
in case of absences during the writing stage; 2) dividing topics among five PPI members
to distribute workload; 3) provide opportunities for PPI members to input their experiences
and opinions ‘offline’ via written submissions for missed meetings; and 4) share resources
with each other to support wellbeing (as often some topics were sensitive to discuss).

Quotation marks have been used when referring to responses from the survey. For the
purposes of anonymity, PPI member’s individual experiences have been labelled as a
collective discussion of an issue so that members cannot be specifically identified.

All group members were white women living in the UK and those with other characteristics
may have offered a different perspective.
Findings

The following subsections are based on the high-level topic areas produced from the
survey responses and further explored by the PPI group. A decision was made early in
the process to omit the number of respondents that mentioned each topic area. The
complexity and variation in experience of IBD suggests that respondents may have
experience of more than one topic, even if they did not mention it in their response to the
question. In addition, it was felt that quantifying the experiences distracted from the
importance of the topic area, which are all ultimately important areas to consider for
further research. Instead, the topics discussed below are ordered by the frequency they
were mentioned in the survey results, e.g. the impact of IBD on quality of life was
mentioned the most and ageing with IBD was mentioned the least.

Quality of Life

Quality of life (QoL) in IBD patients encompasses physical, emotional, and social
wellbeing, which are often affected by the chronic and unpredictable nature of the
disease. The QoL of an IBD patient is ultimately determined by how much the disease
impacts an individual’s life, what is important to them, and how well the disease is
managed. The QoL areas detailed here will be further examined throughout this paper
however, it is important to explore this theme directly, as respondents spoke about the
significant ways in which IBD impacts QoL overall. As one respondent of the survey
commented, “I think it would be important for people to be more aware of how many areas
of your life IBD affects”.

Symptom management and the impact this has on daily activities were commonly
reported by survey respondents in relation to QoL. Effective symptom management is
crucial for minimising pain, complications and reducing risk of future flare ups, and
therefore paramount in improving patient’s QoL. Physical symptom management may
include taking medications, adjustment to daily routines, and dietary and lifestyle
modifications. PPI members resonated with one survey response, “My condition improves
if I eat bland food, however that can feel quite limiting and makes life quite boring”
highlighting that symptom management may come at a sacrifice. Due to the wide range
of physical symptoms, symptom management can become complicated and require
significant planning both for immediate disease management and long-term health
outcomes. Respondents commented on feeling as though “life is ruled by treatment”,
having to be “super aware of planning [ahead]”, and that “to live a full and happy life on
biologicals…takes a lot of planning and is an all day daily task”. However, when the right
management methods are found the burden of IBD is reduced; “In remission just now and
quality of life has improved greatly”, and “[due to the right medication, diet and exercise]
I don’t have to think about my Crohn’s because it’s not affecting me daily, which really
improves my well-being”.

The psychological impact of IBD plays a vital role in shaping the QoL for patients. This is
predominantly due to the chronicity of disease, the constant threat of flare-ups and the
associated isolation, anxiety, distress, and depression. Respondents reported feeling
“grief at losing the old me”, feeling as though they “can’t trust my body [in sexual
encounters]”, and feeling “so so so alone”. Some respondents commented that they feel
as though they just must accept their IBD related QoL and just “get on with it”. PPI group
members agreed that often acceptance is key, but that it is incredibly frustrating as it takes
time to come to terms with the person you need to be to live with IBD. The PPI group also
spoke about what QoL looks like for them, including the variation of QoL reported by
survey respondents, highlighting that it often means something different to different
people.

Social considerations impacting the QoL of IBD patients are also significant. The
symptoms of IBD can make it more difficult to socialise and partake in different events,
and this can lead to withdrawal from interactions and social isolation. Respondents
commented on feeling as though they “don’t go out at all”, “stay in when guts are dodgy”,
have to cancel plans for fear of being “caught outside, no where near a toilet” and that
when “symptoms lessen[-]…[they are able to] go out!”. This is compounded by a potential
fear of being judged or misunderstood, and feelings of guilt for not being able to take part
in events, further diminishing QoL. PPI group members spoke about being labelled as
someone who is unreliable, often just due to the unpredictability of the disease, and that
this lack of understanding from friends or family impacts social interactions and ultimately
can lead to isolation.

Finally, survey respondents reported challenges associated with employer support,

particularly around understanding and awareness of IBD. This becomes even more
challenging considering the relapsing and remitting nature of the disease and
understanding IBD symptoms, from the view of the employer, can be complex.
Respondents reported that due to IBD they had to “stop working”, “not feeling able to work
as much as you would like to” and feel as though IBD has “restricted [-] career
opportunities”. The PPI group spoke about how education poses similar challenges to the
employment issues raised by survey respondents. PPI members with experience in
education reported difficulties in obtaining extensions for deadlines, having to prove that
they are unwell when symptoms are less visible (such as fatigue), and asking for adapted
accommodations (such as toilets nearer exam rooms).

Throughout the survey responses, an overarching theme of “surviving, not living” comes
through from IBD patients. Overall enjoyment in life and the ability to carry out day-day
activities are inhibited by the symptoms and limitations imposed by IBD. While this is
specific to an individual, the burden that comes with living with a chronic disease is
common to patients.

Cost of and access to care

Cost of and access to care was the second most prominent topic to emerge from the
survey with respondents reporting on their experiences interacting with healthcare
services and professionals.

Some respondents reported that delayed access to care results in feeling as though they
are unable to access care in a timely manner and needed to manage their own IBD. Some
respondents from the survey reported that they felt they could no longer access
immediate care through appropriate routes and that understaffing in healthcare often
resulted in feelings of “neglect[-]” or “stress[-]”. Respondents to the survey commented
on times where they haven’t felt listened to by medical professionals, resulting in patients
feeling as though they “have to grin and bear it [symptoms]”. PPI members resonated
with one comment which suggested that patients may delay seeking care as they are
“hoping to ride it [a potential flare] out and hope it calms down soon”. This may be due to
multiple reasons, such as not wanting to burden an already overrun healthcare system or
feeling as though the IBD team do not have time or are unable to help.

When accessing care, respondents reported not always understanding the information
given to them by healthcare providers or being given insufficient information about the
decisions made about their treatment. The PPI group discussed how communication
issues are often made worse when transitioning from child to adult services, where the
care received in adult services is less intensive, and communication is not as often. The
PPI group also discussed how little guidance there is for IBD patients when they are
travelling or moving to a new country. Nearly all PPI members felt that they needed
extensive knowledge of their medical history to be able to receive care from new
healthcare providers who would not have access to their original medical records. This is
especially challenging if someone has multiple conditions or must speak to non-
specialised healthcare providers about their IBD medication or symptoms. Some PPI
members discussed that having background knowledge on IBD through medical science
aids a deeper understanding of treatment options or decisions around care but otherwise,
the group agreed that information provided online can be overwhelming and is sometimes
not massively accessible.

Respondents to the survey also commented on the time and financial cost of navigating
access to IBD-related healthcare, where managing multiple medications and interactions
with healthcare providers can be challenging. Respondents to the survey touched on how
“prescription charges add a burden and worry” and that extra charges are often necessary
to accommodate IBD, such as cool bags to carry around medication. The PPI group
related to one particular respondent who said, “life at times can feel it’s ruled by hospital
appointments, regular blood tests, ordering and collecting monthly prescriptions…[etc]”.
In addition to this, the PPI group discussed the cost and time it takes travel to attend these
various appointments and that care in the local community would be a worthwhile
consideration.
Respondents to this survey also wished to comment on times where their access to care
and treatment has worked for them and expressed gratitude for the services they
received. Two responses that particularly stand out are “Having an effective and
approachable IBD team has been a lifeline” and “When the doctors put me on the right
medication I was able to find the will power to get better and make my life normal again”.
The PPI group agreed that public and patient engagement gives a unique insight into IBD
beyond the patient perspective and allows them to appreciate the pressures that the NHS
are under, as well as gratitude for the work and research that goes on behind the scenes.
However, improvements to communication of medical treatments, as well as access to
and cost of care should be explored further.

What does 'remission' mean

The concept of being ‘in remission’ varied widely among respondents, with many
highlighting the ambiguity and confusion surrounding this term: ‘what [does] it really
mean[-] to be ‘in remission’”. The PPI group agreed that the problem with the concept of
‘Remission’ is fundamentally a communication and language problem.

For some respondents, being in remission meant that no active inflammation or

symptoms are detected, implying this person has recovered and is well, sometimes called
‘Deep Remission’. For example, one respondent reported being symptom-free for over
13 years, associating remission with a state of full recovery. However, remission, to some
respondents, described a state where there may still be some symptoms, although mild
and less severe than when they were experiencing an acute flare. This form of remission
largely suggests that although they are on their way to recovery, mild symptoms still
persist: specific examples include “...finally have a bit of remission I think… if I could just
get over feeling the fatigue effects” and “Even though I’m in remission I struggle with
fatigue, having a nap most days to alleviate the tiredness.” This understanding of
remission suggests a transitional phase, rather than an endpoint where symptoms are
not fully resolved.

The most common experience of remission reported by survey respondents challenges

the concept of remission as recovery. For many, despite no active inflammation being
detected and being declared that they are in ‘clinical remission’, there is still a continuation
of symptoms. One respondent encapsulated this, saying “I am technically in remission,
but symptoms, although lesser, persist” and another reported “in remission according to
blood test results. But I have constant aches and open bowels 4/5 a day.” These lingering
symptoms create frustration and confusion, as patients find themselves labelled as “well”
despite continuing to live with symptoms. One respondent reported having “constant
fatigue, aches and pains and mouth ulcers”. Another described their remission as “like it’s
just sleeping, grumbling, waiting to wake up and have a flare”.

The PPI group had an experience of all types of remission expressed by the survey
respondents. The group discussed that the first definition is usually what most patients
understand ‘Remission’ to mean, that they have no active inflammation and, crucially, no
symptoms. This is the benchmark that causes the actual experience of remission to
become confused and inaccurate. Clinicians may still use the term ‘remission’ even when
bowel symptoms or other IBD symptoms, like fatigue and joint pain, persist. This can
leave the patient, who still has symptoms, feeling frustrated, hopeless, and potentially let
down by their clinician. This mismatch between medical definitions and patient
experiences can have broader implications. The clinician may imply or even directly
conclude that the remaining symptoms must be caused by another condition altogether,
such as IBS or unexplained pain or by stress or lifestyle choices. This can lead the patient
to feel as though they are responsible for their continuing symptoms. The PPI group spoke
about being unable to know what full remission should feel like and that this ‘deep
remission’ or life without IBD symptoms is something that some members haven’t
experienced for years. Some PPI members spoke about the ‘diagnosis of remission’ as
having implications on support received from social circles. Group members recalled
times where they felt they were being perceived as over exaggerating symptoms by family
and friends because the doctor said they are in remission, so eventually you end up “just
putting up with being in remission” [quote from PPI discussion]. The group agreed that
use of the term remission is ‘thrown around’ and should be used with more consideration.

From the survey respondents and PPI group discussions, it was clear there is an interest
to explore the differences between what remission means to the person with IBD in
comparison to clinical remission. The PPI group agreed that it would be useful to
develop new language to describe these different states of ‘wellness’, as this is an
important factor to consider when assessing patient clinical and self-reported
outcomes. The survey respondents also highlighted that acknowledgement from
clinicians is required where a patient is still experiencing symptoms, but they are in
remission, and that exploring the reasons for this and providing support is meaningful to
the patients.

Mental Health

Many respondents mentioned mental health, particularly stress, anxiety, and depression,
in relation to their wellbeing and quality of life with IBD. These were often related to trying
to manage the condition outside the home, aftereffects of surgery, and anxiety around the
potential or current condition of flaring. As one respondent puts it, “Often the anxiety
associated with IBD can be as troubling as the physical symptoms”.

The unpredictable nature of living with IBD can cause anxiety about being able to do daily
activities or be able to work, even in ‘remission’ symptoms such as fatigue and bowel
urgency are common. Respondent examples included, feeling “anxious about going out
& doing normal activities”, “Need[ing] to plan days around toilet trips”, and “the stress and
anxiety through driving…‘will I make it without stopping’ journey’”. Ultimately, poor mental
health, because of living with IBD, adds unnecessary stress to carrying out normal daily
activities. Some PPI members added that this stress and anxiety also has the potential to
exacerbate IBD symptoms and for some PPI members, their experience of increased
stress and IBD symptoms resulted in a round of steroids or a change in treatment to avoid
a prolonged flare. However, the PPI group also felt it was important to note that poor
mental health itself may not cause a flare and the onus should not be on the patient to
‘relax’ or ‘manage stress better’ as a solution or preventative measure to reduce IBD
flares. For some patients, environments that cause stress or poor mental wellbeing
cannot be controlled. The PPI group also discussed the side effects of medication to help
manage IBD symptoms, such as steroids, can result in mood changes and depression
and that where possible some members have even avoided this treatment to reduce the
impact on their mental health. It became clear from the respondents and the PPI
discussion that the impact of poor mental health and IBD is complex and requires further
exploration in research, particularly in cases where the patient cannot control the factors
or environments causing additional stress and potentially exacerbating IBD symptoms.

The PPI group related to one response about the anxiety of starting new treatments and
wondering whether they will work and what the side effects might be: ““I am now starting
over again with new medication. It is the worry that it could take a long time to get back
to remission and find one that works for me, this is what puts my life on hold and makes
me feel anxious and frustrated”. The PPI group discussed the trial-and-error nature of
new treatments can result in cycles of getting your hopes up and the crushing
disappointment of failed treatments which can often be harder to handle each time.
Additionally, the anxiety about visiting hospitals repeatedly and the possible need for
invasive treatments, such as endoscopies, and surgery can be huge. PPI members spoke
about anxiety around complications of treatments, whether they will be able to tolerate
the pain or side effects and have the mental and physical perseverance to take them after
already enduring a long period of flaring. They may also be very anxious about changes
to their body image and the impact of stoma surgery, both topics discussed in chapters
below. However, the PPI group and respondents also shared experiences where
clinician’s choice in treatment or change in approach after listening to these concerns
removed these anxieties and improved general wellbeing in addition to remission.

The PPI group members discussed that most people would find it easy to support others
with short-term illnesses, but that it takes a lot of effort to support someone over longer
periods of time, especially for unpredictable chronic conditions like IBD. If there is a
repeated cycle of failed treatments, some friends and family may struggle to accept that
there isn’t an easy answer and start to question whether the patient is “making it up,
[which] in some ways [-] worse than the physical symptoms and it does lead to negative
feelings”. The PPI group discussed the mental impact that comes from the difficulty of
being able to commit to social events, and that often this can result in a fear of letting
people down before the event has even happened. The group agreed that it can be
difficult to maintain relationships because you must choose where to spend your energy,
which can result in a thinned-out support network as people struggle to understand your
experience. Ultimately, this can cause “feel[ing] isolated and alone” and that “no-one
understands” unless they have this condition themselves.

The PPI group are aware of some places where appropriate mental health support is
accessible and offered as part of IBD treatment, but this is not widespread due to waiting
lists and staff shortages. Access to private mental health treatment comes at a cost and
may not be an option for some patients. One survey respondent summed this up with,
“No emotional or mental health support is offered or taken seriously from my experience”,
and the PPI group agreed that this is an essential area where change is required.

Extraintestinal Manifestations of IBD symptoms

Respondents mentioned ‘non-typical’ IBD symptoms that they felt were important to
highlight as impacting their experiences and wellbeing with IBD, such as constipation,
vomiting, pain and bloating. This topic is based on respondents mentioning symptoms
that they believe are explicitly linked to their IBD. The respondents have mentioned these
symptoms because they have not been asked about it during the survey, which might
indicate that it was not considered a typical IBD symptom when the survey was created.

Non-typical IBD symptoms, with respect to this study, refers to symptoms other than loose
stools and blood in stools. As IBD is a systemic disease, extraintestinal manifestations
(EIMs) of the disease can occur. Non-typical IBD symptoms can include non-typical IBD
gut symptoms like pain and constipation as well as EIMs which are manifestations of IBD
related inflammation that occur outside of the gut. Research suggests that up to 50% of
patients with IBD experience a minimum of 1 EIM therefore non-typical IBD symptoms
are an important aspect of IBD to discuss (Vavricka et al., 2015; Hedin et al., 2019).
During the PPI discussions non typical IBD symptoms were discussed and experiences
of living with these symptoms were shared.

The non-typical IBD symptom which was mentioned the most was constipation. While
IBD is typically associated with diarrhoea, constipation can also occur and constipation is
suggested to occur more in inactive UC than CD (Farrokhyar et al., 2006). Several
respondents of the survey and some PPI members expressed that they feel the symptom
of constipation is overlooked despite being problematic and one respondent shared that
“constipation is a problem for them 99% of the time”.

The second most mentioned non-typical IBD symptom was pain generally and the
symptom of abdominal pain. Pain is one of the most common symptoms experienced by
IBD patients and pain can occur regardless of an IBD patient's current disease activity.
Pain has been suggested to contribute to the poor quality of life experienced by some
IBD patients (Schirbel et al., 2010). Respondents of this survey described the pain of IBD
as “severe” and “unbearable” with one respondent referring to how pain impacts their
sleep. During the PPI group discussion, abdominal pain was discussed and how easily
this can be dismissed as being related to other things, such as menstruation pain, which
is particularly problematic pre-diagnosis. The group also discussed how pain is not
comprehensively monitored for IBD despite the symptom being experienced by most
patients. The group discussed how it can understandably be difficult to identify whether
symptoms like pain is due to IBD or whether it is due to something else, as “it’s not clear
whether it’s Crohn’s related or some other condition”. Out with this survey, journals such
as the BMJ have recently released a practical guide about chronic abdominal pain, due
to the increasing number of studies referring to patients feeling misunderstood by
clinicians regarding their pain and the insufficient management of chronic pain in IBD
patients (Baillie et al., 2024). While pain and constipation have been discussed in depth
the Crohn’s and colitis UK website has information regarding many typical and non-typical
IBD symptoms.

IBD is not only restricted to affecting the inside of the gut, but the condition can also affect
other areas of the gastrointestinal tract, including the mouth in which lesions and
ulcerations can form making it challenging for individuals to eat, as well as areas outside
the gut, such as inflammation in the skin and joints (Ribaldone et al., 2020; Crohn’s and
colitis UK 2019, 2021). Comments left by respondents of the survey mentioned that
treatments are aimed at treating “physical gut symptoms” however EIMs like joint pain
“can be just as difficult to live with” and that research regarding EIMs may be worthwhile.
Approximately 40-50% of IBD patients suffer from joint pain and some IBD treatments
like anti-TNF agents are used to simultaneously reduce IBD symptoms as well as reduce
EIMs (Orchard., 2012). The PPI group discussed their knowledge about EIMs, including
erythema nodosum (a skin condition which causes tender red nodules usually on the
shins), issues with eyes such as dryness, and ectopic Crohn’s disease (Crohn’s located
in the vulva).

Some members of the group had not heard of the EIMs mentioned above before and the
discussion allowed members of the group to further their understanding of IBD, as well
as highlighted the extensive knowledge required to understand IBD. The PPI group
agreed there is a need for a multidisciplinary team or stronger communication between
teams, for patients to receive the correct care and manage medication effectively.

Impact of Additional Conditions

Many respondents spoke about additional conditions, such as other autoimmune

disorders and the impact of surgeries, that they did not link to their IBD but felt that it
impacted their life with IBD, such as COVID, arthritis, or fibromyalgia. As one respondent
put it “I have multiple conditions so sometimes it’s hard to tell what causes some
symptoms”.

This topic highlights the importance of acknowledging other short or long-term conditions
that impact their responses to IBD wellbeing or coordination of care. Respondents
reporting these additional conditions emphasised the level of knowledge required to
ascertain (often guessing) what is and what is not an IBD related issue: “been ill for flu
like symptoms… it’s all culminated in a flare blood in stools”. Respondents also
highlighted the challenges of having a variety of conditions to manage at the same time,
as one respondent summarised “when there are comorbidities things get very
challenging.. medications get even more confusing and capacity to focus on healing IBD
gets very hard as it’s hard to manage everything all at once”. Patients with comorbidities
often deal with many different healthcare professionals across multiple disciplines. The
survey responses highlighted the requirement for well-communicated multidisciplinary
teams to manage complex treatment plans effectively. The PPI group discussed the
benefits and risks of using multiple medications and how these must be carefully
balanced. This is particularly crucial as treatment effects of IBD medications are less well
known for IBD patients living with other conditions, due to their exclusion in investigative
randomised control trials (RCTs) (Román AL et al., 2011). Considering the potential drug
interactions, additional side effects, and adherence challenges, this can be an added
layer of stress to a patient's treatment journey.

Overall, this topic highlights the importance of acknowledging other short or long-term
conditions that introduce unique challenges to the management of IBD. Comprehensive
coordination of care, particularly for people with dual pathologies, is essential for
addressing challenges and to provide effective IBD management. Ensuring that all
aspects of health are considered, alongside communication and knowledge sharing by
the correct healthcare professionals for improved decision-making and overall patient
reported as well as clinical outcomes.

Awareness and knowledge about IBD

Awareness and knowledge of IBD was mentioned by respondents of the survey and
referred to topics including the stigma surrounding IBD, the isolation and lack of
sympathy experienced by IBD patients, as well as the need to raise more awareness of
IBD especially particularly focused on the invisible illness nature of IBD. During the PPI
group discussion members of the group shared their own views and experiences in
relation to the topic area.

Several respondents of the survey commented regarding feeling embarrassed about their
condition due to the stigma surrounding IBD. One respondent commented that they are
very open about their IBD, however they “still find it embarrassing as no one wants to talk
about issues” with their bowels”. Another respondent commented “that the disease is
debilitating and misunderstood which makes it hard for people to understand which stops
you wanting to talk about your illness”. Stigma surrounding IBD has shown to have an
impact on a patient’s quality of life (Taft and Keefer., 2016) and that IBD can lead to
embarrassment among patients due to the nature of their symptoms, such as bowel
incontinence and odours as well as the visible aspects of IBD surgery such as having a
stoma (Guo et al., 2020). During the PPI group discussion, members spoke about initially
feeling embarrassed and apprehensive when explaining IBD to family and friends.
Members discussing IBD among family members found that some of their relatives also
had this condition, but due to stigma and embarrassment this wasn’t disclosed. Stigma
surrounding IBD may be due to the lack of knowledge regarding the condition which
makes raising awareness important (Guo et al., 2020). Without this knowledge, patients
often suffer alone.

The invisible nature of IBD can often make it challenging for others to understand an IBD
patients' needs or experiences. An IBD patient can appear visually well, but they may be
experiencing an IBD flare without noticeable symptoms. Several respondents of the
survey referred to the challenges experienced due to the invisible nature of IBD including
finding it difficult for others to understand what they are going through and referred to
phrases which the PPI group resonated with such as being told “you look fine” and “you
don’t look ill”. These phrases can be difficult to respond to and have left many of the
survey respondents feeling as though they are “making it up”. Another survey respondent
referred to how their partner received more sympathy for a minor finger injury “than when
[they] had a severe Crohn's flare”. As IBD is not visible like a minor injury, such as having
a cast for a bone fracture, people cannot visually see you are unwell and may contribute
to the lack of understanding or support.

Respondents referred to the lack of accommodation by society when living with an

invisible illness. Other respondents referred to the lack of understanding in areas like the
workplace. PPI members could also resonate with lack of understanding in workplace
settings and that it’s difficult for employers to understand, for example, that there may be
a toilet down the corridor but during a flare of IBD a toilet much closer is required.
However, some respondents and PPI members spoke about the flexibility provided in
hybrid or home working and that now employers seem somewhat more understanding
about workplace adjustments since the COVID-19 pandemic. Similarly, schools and
higher authorities have also been suggested to lack appropriate awareness of IBD,
making aspects of life more difficult for IBD patients. Being faced with less understanding
members of society, one respondent recalls being told that they “don’t ‘look’ like” they
should be using disabled toilets. Comments referred to schools not understanding the
urgency of IBD or patient issues/needs despite people with IBD having medical cards.
Survey responses also highlighted that authorities may not recognise IBD as a “serious
illness”, referring to the lack of support for IBD patients in terms of “benefits and
accessible parking”. Efforts have been made by organisations like Crohn’s and colitis UK
to raise more awareness of IBD and to emphasise the needs of patients including toilet
accessibility, financial support and parking accessibility. However, these survey
comments suggest that more needs to be done.

Raising further awareness of IBD may also help reduce the isolation and increase overall
support patients experience. Respondents of the survey left comments in terms of
isolation including that “nobody understood what I was suffering, making a lot of people
distance themselves from me” and “living with IBD can feel very lonely even when
surrounded with lots of people”. Research suggests that IBD patients may be more likely
to experience loneliness due to multiple reasons including the lack of awareness of IBD
and the impact of IBD symptoms (Chen et al., 2022; Fourie et al., 2018). [MH13] One
respondent highlighted the importance of having a support network, “thankfully due to the
length of time I have suffered from this condition, I have a very good close caring family
network”. Members of the PPI group also spoke about supportive networks that surround
them and often this requires family/friends to research and increase their knowledge
about the condition.

Overall, the topic of awareness and knowledge was referred to in many comments of the
survey and respondents have emphasised the need for more awareness of IBD. As one
respondent puts it, “…educating people on the reality of it [IBD] is so important”. Efforts
to increase awareness by the PPI groups work include the release of the short film “Our
lives with IBD” at the Edinburgh science festival. This short film explored inflammatory
bowel disease, the experiences of those living with it, and the ongoing research in the
field. Awareness campaigns also exist via charity networks such as Crohn's and Colitis
UK, who holds regular coffee mornings for IBD patients and volunteers to meet each other
and share their experiences, which helps raise awareness amongst the patients of
strategies for coping with various IBD issues. However, based on the comments of the
survey more awareness needs to be raised.

Self-management of IBD

Treatment and management of IBD involves a multifaceted approach including a range

of medical interventions covering immunosuppressants and steroids to surgery.
Medication adherence and drug management is a vital aspect that requires patients to
follow treatment plans to help reduce inflammation. In addition to conventional medical
treatments, self-management and alternative methods of care have a significant role in
IBD and can contribute to improving overall patient outcomes. The trial-and-error
approach inherent in IBD treatment, alongside high failure rates and side effects of current
medications, brings a strong interest in patients to turn to alternative methods: “I wish
there were better treatment options that don’t involve drugs”.

Respondents commented that they would like to know more about self-management
options, such as dietary adjustments or how to exercise with IBD. As different foods and
dietary patterns have individualised effects on disease and inflammation, dietary
management is vital for symptom control, nutritional status, and quality of life. The PPI
group spoke about their experiences of following a specific dietary approach, eliminating
foods that may trigger symptoms, and consuming more foods that promote gut health. An
important aspect of dietary management for IBD patients is receiving the correct
professional support for optimising nutrition and as one respondent puts it, “Dietary
support should be readily available”. Exercise can also be used as a complementary
approach to IBD management, offering multiple benefits relating to physical function,
mental health, bone health, and long-term reduction in inflammation, however choosing
the right type and intensity of exercise is important for IBD patients to receive these
benefits without worsening symptoms. Communicating safe and effective exercise
through improved patient guidelines and plans is therefore crucial for helping IBD patients
achieve better health outcomes.

As discussed previously, IBD can have profound impacts on mental health and therefore
the psychological aspect of self-management must not be overlooked. Having effective
coping mechanisms and approaches to stress management, an issue raised by multiple
respondents and experience by the PPI group members, can significantly improve a
patient's quality of life. Approaches may include stress management and relaxation
techniques, therapy and counselling, or flexibility in an individual's working environment.
This requires a collaborative approach between patients and healthcare providers,
ensuring the correct dissemination of resources and information.

Self-management can be a desirable approach for patients as it empowers individuals to

take control of their condition and improve quality of life. Respondents expressed that
they “learn[ed] to tune into bodily wisdom” and a desire to learn “how to better manage
oneself [and] take responsibility for myself [to] understand what I can do to improve my
condition” and use self-management adaptations to control their IBD. Masi et al (2022),
highlight this perfectly with a paper equally balanced on novel medicines and therapies
(current drug targets and innovative therapies) with various complementary therapies
such as cognitive-physical approaches, FODMAP diets, herbaceous medications etc.
However, in the same way that IBD does not affect all patients identically, the resounding
theme was every patient must approach alternate methods of care independently.
Respondents and members of the PPI team highlighted the variety of ways in which they
aim to remain in remission or lesson symptoms, such as eating vegetables and fruits,
short bursts of exercise and using supplements. All PPI members had a different
approach to self-management techniques; some did gentle exercise like yoga and others
did high intensity training, some could eat vegetables but not fruits, while others chose a
less fibrous diet. In some cases, this was guided by support from healthcare professionals
but in other cases, PPI members spoke about having to figure out what works for them
on their own. The PPI group were curious to know more about why self-management
approaches seem to be based on individual circumstances as what works for someone
may not work for all.

The management of IBD through self-driven approaches and alternative methods allows
patients to take a proactive role in controlling their health. An overarching theme across
self-management strategies is the importance of knowledge and education around
alternative approaches, and so while there is potential for IBD patients to use these
methods to achieve better health outcomes, collaboration with healthcare professionals
may be required to promote optimal management.

Women’s Health and Reproduction

Women’s Health and Reproduction was an emerging topic that some respondents felt
was important to them and should be examined further. The PPI group discussed this
topic in relation to the respondents’ comments and brought forward new experiences. It
should be noted here that all members of the PPI group are women.

Respondents to the survey shared that menstruation and menopause had a negative
influence on their IBD and/or bowels generally. A study conducted in 2015 suggested that
menstrual changes occur in the year prior to IBD diagnosis and assessment of
menstruation should be considered part of the screening process for a new IBD diagnosis
(Saha S et al, 2014). A more recent study found that abdominal pain, fatigue, headaches
and other symptoms around menstrual periods affect IBD patients more than healthy
controls (Lahat A, et al, 2020). In addition, healthy controls were more likely to report
increased bowel changes around menstruation, but acknowledge that IBD patients may
be more accustomed to increased bowel habits so may not notice or under-report minor
changes. This resonates with respondents to the survey and experiences of the PPI group
members, who all spoke about increased and worsening of bowel habits during
menstruation, one respondent summarised “…bowel symptoms are absolutely worse with
menstruation”. The PPI group discussed how hard it can be to tell the difference between
IBD or menstruation bowel urgency and pain as they can often feel similar. The PPI group
also spoke about issues with low iron which makes symptoms like fainting and dizziness
worse during menstruation. According to research, there is an increased risk of iron
deficiency in patients with IBD, due to malabsorption and blood loss from the intestines,
but also due to menstrual bleeding (Mahadea, D et al, 2008).

Respondents to the survey shared concerns about fertility, maintaining remission during
pregnancy and the impact of pregnancy on IBD symptoms or flares. One respondent
shared their experience, “…due to my ongoing issues with chronic vulva crohns… [I] can’t
access any fertility treatments…It makes me feel less of woman”. PPI members also
spoke about feeling limited in relation to contraception as they worried about extra
hormones or side effects that may make IBD symptoms worse. The comments from
survey respondents highlighted worries of having a flare during pregnancy, that “IBD
during pregnancy is incredibly difficult…The lack of understanding is awful amongst some
drs/nurses”. The PPI discussed the challenges faced by young women in managing IBD
and repeated flares through their reproductive years. A key concern for the group was
how ongoing management of IBD has the ability to steal away time in which they may
consider having children. Managing IBD flares, miscarriages, and resulting mental health
challenges simultaneously can be deeply traumatic and this struggle often intensifies the
emotional toll of living with IBD, as it not only affects their physical health but also their
sense of identity and future aspirations, including family planning. Although the Crohn’s
and Colitis website offers information about fertility, pregnancy, and breastfeeding as well
as sharing research exploring the experiences of mums to be with IBD, the PPI group felt
that the impact of IBD on pregnancy and the side effects of IBD medication on pregnancy
isn’t well known or widely discussed outside these resources (Crohn’s and Colitis 2023¹,
2023², 2013).

The group emphasised the importance of timely discussions about women’s health and
reproduction, including proactive conversations and decision-making about treatment
options between clinicians and women who want to conceive.

Exhaustion and Fatigue

It is important to note that some core survey questions were aimed directly at
understanding fatigue. Despite the fact it was mentioned in the survey, these respondents
reemphasised the impact. Crohn’s and Colitis report that 4 in 10 patients are affected by
fatigue at any one time whilst in remission, to add to this only 5 in 10 patients are asked
about their fatigue in appointments with their consultant (Crohn’s and Colitis UK, 2022¹).

From the comments in the survey around fatigue, many were centred around the notion
that “fatigue is underrated” in its effects on daily life and that it can “often [be] one of the
biggest side effects of IBD”. When looking at alternate methods of care for fatigue, many
online sources advice is often limited or not written from a patient aspect: “eat better or
take supplements”, “get tested for anaemia”, or simply “get a better sleep schedule.”
However, patients with IBD from either the survey or the PPI team have stated how
tackling fatigue is not as straightforward as improving sleep schedules or taking more
vitamins and minerals. From the literature, fatigue has no links to being in flare or
remission, or between ulcerative colitis and Crohn’s disease, so being fatigued is
unpredictable (Uhlir et al, 2023). Uhlir et al, did note a correlation between depression
and fatigue within IBD patients with respondents supporting this by saying “fatigue has
affected [their] mood as well.” This highlights how severely patients are affected both
mentally and physically by fatigue compared to how low it scores upon a doctors list to
inquire. It is possible for severely fatigued patients to receive treatment such as B12
injections or iron infusions, however as one respondent comments “I have to have B12
injections… and I’m still constantly fatigued”, treatment options are not always effective.
It is important to note here that some treatments for fatigue, such as injections, do work
for certain patients and such treatment options should be an ongoing discussion between
the clinician and the patient.

The PPI group also spoke about the unpredictable nature of fatigue and how difficult it
can be to plan social aspects of their lives, plan for work or academic responsibilities, and
they disclose having IBD to express fully the effects of fatigue. One respondent
commented how fatigue “impacts productivity and output at work”. PPI members who had
been through school/university exams did express how being able to show a doctor’s note
for extenuating circumstances if their IBD flared would alleviate stress at an already
stressful period, however they commented on how this was harder to obtain due to the
invisible nature of fatigue. The PPI group agreed that mental and physical fatigue are not
considered severe symptoms of IBD and there is a risk of looking lazy by employers or
school tutors.

The PPI team spoke about how organising their social life along with work to allow for a
slower pace was highly beneficial, for example planning social engagements, sports or
activity, and working hours to be spread out across the week/month. They also mentioned
how they would be as open with peers and colleagues, so in the circumstance of having
to cancel events, or work from home due to fatigue, people would be understanding of
their condition. However, the group recognised that these approaches are not always
possible, and that more understanding and compassion from people without IBD is
required.

Body Image

More recently, improving negative body image is increasingly part of mental health
awareness in society. Respondents highlighted the particular impact of IBD has on body
image, despite it being considered an invisible illness.

A study conducted by Saha et al (2016), monitored how body image was perceived upon
diagnosis of IBD, through remission, flares, and between men and women. They saw a
peak in dissatisfaction in body image upon diagnosis, which remained high but somewhat
stable thereafter. Dissatisfaction was higher in patients on steroid treatment, higher
disease activity and side-effects related to IBD, along with disease location (particularly
in Crohn’s disease). A higher dissatisfaction was also found with body image in women
compared to men. All of which ultimately led to poorer mental health and quality of life for
patients. Within the PPI team, it was mentioned how some might exhibit “avoidance
behaviours” by refusing medications which would usually change body image, such as
gaining weight from steroids and having what is known as a “moon face”. To further this,
IBD itself can cause bloating and rapid weight loss, which again removes the sense of
“autonomy” or “possession” over one’s own body and identity, especially where making
adjustments using diet and exercise, which may be limited due to IBD.

A large issue is battling with societal norms of body image alongside battling a chronic
illness. Poorer sense of body identity and body image can influence social engagement,
stylistic choices and romantic aspects of life, leaving individuals “feeling unattractive
generally”. Much of what society sees of a person is their body image, particularly the
face and overall presentation. Members of the PPI team spoke about issues such as
mouth ulcers or steroid treatments causing facial swelling and rashes on the skin, as a
side of effect of IBD, causing them to wear clothing that didn’t align with their fashion
identity. The PPI group mentioned how, particularly when in flare, they would opt for
baggier, more patterned designs to hide stomach bloating or stomas and that often due
to these symptoms they would avoid any romantic engagement with others, such as
dating or sex.

Experience with Stomas

When Crohn’s or Colitis isn’t well controlled by medication, sometimes the only option is
to have surgical intervention and create a stoma. A stoma is where the end of the bowel
is diverted out through the abdominal wall and sits just outside the skin of the abdomen
(Crohn’s and Colitis UK, 2022²). This requires wearing an ‘appliance’, ‘bag’ or ‘pouch’ to
collect the waste from the stoma. Nobody who considers stoma surgery does so lightly.
It is often the only option when in a life-threatening situation due to complications from
flaring IBD.

Many IBD patients are very scared about the prospect of having to have stoma surgery
at some point, which the PPI group identified with primarily because there is little
knowledge unless you have experience of this. As one respondent highlights, “Other
people who don’t have stomas just do not understand what it’s like”. The PPI discussion
related to their experience of stoma bags (whether that was themselves or someone they
knew). Members spoke about misconceptions and fears during their discussion of this
topic, for example, that can be assumed that stoma bags aren’t drainable which is false
and the fear of problems with consistency of output, seals, skin problems that can then
cause leaks, which can be very stressful and upsetting to manage particularly outside the
home. Some people with stomas may make dietary adjustments in order to prevent
blockages and control the consistency of the output to prevent dehydration and leaks.
There may also be an increased risk of developing a hernia after stoma surgery so
learning how to prevent or avoid this is important because, as one respondent explained,
“Parastomal hernia bulge increases difficulties with body image and pouch reliability”. If
a patient with Crohn’s has a stoma they can still have symptoms, as one respondent
mentioned “I have a stoma but my stoma output is higher at the moment in a flare”.
Therefore, in some cases, a stoma does not necessarily mean that a patient no longer
has IBD or related symptoms to manage.
Respondents described how going through stoma surgery can change their self-
perceived body image. It’s a huge adjustment and some people cope better than others
with this change. One respondent shares, “It [the stoma] does affect how I look at myself
in the mirror”. The PPI group discussed how there are fears around how someone’s
partner will view them or how dating with a stoma can be daunting. As mentioned in
previous chapters, IBD is an invisible condition but that surgery is a visible reminder of
the condition and raises concerns about whether “people can see my stoma bag”. One
respondent described being in the middle of the process of acceptance “I feel grief at
losing the old me. I don’t feel attractive”. The PPI group acknowledged that a stoma
challenges ideas about how someone feels confident and attractive, but that there are
ways to begin to feel comfortable, such as wearing patterned or loose clothing, in your
new body.

Some patients are given access to mental health services to help them work through
these issues of acceptance and adapting with life having a stoma. PPI group members
who had experience of receiving support for mental health praised its value. However,
some patients are given little to no mental health support in adjusting to having a stoma
and are left to try and figure things out on their own. As one respondent’s comment
accurately describes: “I wish I was offered counselling afterwards and support. I had the
appliance for 10 years and my GP surgery wasn’t even aware I had a stoma”. As
mentioned in a previous chapter, improving mental health support and awareness of IBD
is considered important for respondents and the PPI group.

Ultimately many of the challenges of living with a stoma require development of

management strategies, however despite this, having a stoma can really improve a
patient’s quality of life. As one respondent explained “I had my bowel removed a year ago
and now have a stoma bag which has changed my life for the better, going from 30 times
a day to now having control”. When discussing potential stoma surgery with patients it’s
important to acknowledge this trade-off as this respondent describes: “My stoma has
given me my life back. It does come with it’s own challenges, for example fear of leaks.
However, I am in a lot less pain and able to do things I could not when I was in a flare up
like social things. My quality of life is a lot better with my stoma.” And one final respondent
sums it up, “My Stoma saved my life. I wouldn't be here without it”.

Age

A few respondents left comments about the topic of age in relation to IBD. The comments
referred to how IBD symptoms and severity can change over time as well as the worries
and concerns patients have about ageing and having IBD. During the PPI group
discussions members of the group shared their own comments and experiences in
relation to age and IBD.

Studies have shown that the incidence of paediatric (<21 years of age) IBD is continually
increasing worldwide including in areas of the world where IBD had not been documented
before (Kuenzig et al., 2022). However, IBD can affect individuals across all age ranges
and although the severity of IBD is suggested to be greater in paediatric patients the
severity can continually change, therefore individuals of different ages may have different
experiences and concerns regarding their IBD (Limbergen et al., 2008). During the PPI
group discussions, the concerns IBD patients have at different ages was talked about.
PPI members who were diagnosed with IBD at a young age spoke about feeling like they
do not know what living without IBD is like. PPI members recalled going through IBD
diagnosis during growth and development as well as hormonal stages, impacting
experiences during these formative years. PPI members spoke about how they were
often the youngest person staying on the hospital ward, the youngest person they knew
who had IBD, and that this affected general mental wellbeing.

A misconception which was discussed during the PPI group discussion was that of being
considered ‘young and healthy’. This view can make it challenging for individuals to seek
help and to talk about their condition as well as to come to terms with being young with a
chronic illness. One respondent also emphasised the added stress that normal parts of
life, like working, has on someone with IBD, “I am retired but if it had struck earlier I would
have had to stop working. Younger people have it especially tough!”. Strategies have
been used to help individuals under paediatric care to feel less isolated, to understand
their condition more and to direct research in a way that is driven by patients, such the
“Let’s talk about research” paediatric IBD event held at the Royal Hospital for Child and
Young People. This event was hosted by the centre for inflammation research in
Edinburgh and allowed young people and their families to learn more about IBD as well
as brought together scientists, research clinicians and patients.

While research surrounding IBD has previously suggested that young patients are mostly
affected by IBD, more recent research has found an increase in elderly (>65 years of age)
onset of IBD (Danpanichkul et al., 2023). One respondent comment “My biggest fear is
when I get older and not being able to control my bowel”. Despite the PPI group members
being in the age range of 20-50 the group were able to discuss elderly onset IBD in terms
of the PPI group members future concerns and by referring to the experiences of others.
From the survey it was clear there are concerns regarding ageing with IBD, especially
when an individual has additional health conditions. One respondent commented “it is
complicated and as I’m ageing both of my diseases are changing !!”. Many articles relating
to IBD and older adults refer to the challenges of diagnosing IBD due to confounding
factors including the physical changes associated with ageing and any additional health
conditions the individual may have (Taleban et al., 2015; Tran et al., 2019). One study of
IBD patients over the age of 60 suggested that the presentation of IBD in older adults is
milder than IBD in younger patients. Additionally, the study suggests symptoms in elderly
onset IBD may also be different. Individuals diagnosed with Crohn’s disease in their older
adult life were suggested to have more rectal bleeding and less abdominal pain and
diarrhoea while older adults being diagnosed with Colitis were suggested to have less
rectal bleeding when compared with patients diagnosed with IBD at a younger age
(Charpentier et al., 2014). Upon diagnosis it is difficult to know the disease course which
makes treating IBD challenging and makes predicting how someone’s IBD may affect
them in the future difficult.

Therefore, while IBD and age was only mentioned in some comments of the survey it is
a topic which is considered and heavily studied in terms of the prevalence of IBD among
different age groups. From the discussions similar as well as the contrasting concerns of
IBD patients of varying age groups became more apparent.
Discussion

Through this paper, the PPI group aimed to explore a patient-dominant model and
approach to research: where patients lead in defining the topic areas, setting the agenda,
and communicating information to the target population, firstly, the IBD population and
secondly, clinicians and researchers.

This paper has explored the priorities around research and wellbeing that are important
to the survey respondents, with more detailed context provided by additional sources and
the experiences of the PPI group. The main topic areas explored for this survey highlight
key priorities for research to continue to improve experiences and outcomes for people
with IBD. This paper also acts as an example that for research to be effective, it cannot
be done without the invaluable knowledge of the patients themselves.

The PPI group acknowledged the interconnectedness of the issues raised in this paper
and that there are commonalities between the topic areas, even when individual variation
in experience occurred. These included concerns about support from wider circles outside
of healthcare settings (family, friends, university or work), reviewing language around IBD,
fears about social isolation and loneliness, the responsibility to manage one's own IBD,
improved communication from healthcare professionals, and seeking expansion of
support for mental health and multidisciplinary teams. It is important to consider these
interconnected themes to understand the complexity of managing IBD as well as develop
better holistic and patient-centred care plans.

Some respondents to the survey answered the free-text question by saying how pleased
they are to fill out a survey focusing on patient-reported outcomes, highlighting how
meaningful the survey was to the people who filled it out. In particular, one respondent
shared that answering the survey questions changed their perception of their wellbeing
and another person shared that the survey questions have highlighted to them that there
are other symptoms to consider when thinking about their IBD and wellbeing. This
highlights that patient-reported outcomes are not only important for clinicians to
understand, but also for patients to expand their knowledge of their or others IBD.
The PPI group found analysing, presenting and communicating patient reported
outcomes an ambitious and rewarding experience. The range of skills, including
academic backgrounds, created the template for this paper, however other PPI groups
with members who have different skills may produce different outputs. The process for
this paper was created from the ‘ground-up’. Throughout the process the PPI group
agreed on the next steps together and each attempted all tasks put forward (aside from
initial topic analysis). However, the PPI group reflected that delegation of tasks based on
skillset or preference would be more beneficial in the future. Members of the PPI group
who have an academic background enjoyed the process of writing and reading about IBD
beyond clinical presentation of disease, being able to showcase the complexity of the
condition without reducing people to numbers or academic jargon. The group liked having
a choice in the direction of the paper and the topics that they would lead for the discussion
and write-up. Further consideration of meeting frequency and varied communication may
differ depending on the group’s preferences.

Additional opportunities presented through this work included sharing experiences and
having the opportunity to bond with other members of the PPI group. Sharing information,
learning not only from the process but more about IBD and the variation in experiences
from each other and the survey respondents, often provided PPI members with new
perspectives on different topics areas. Additionally, the PPI group reflected on surveys,
such as this, where results are not usually disseminated by the patients and for the
patients.

The PPI group agreed that it was an empowering research project to embark on and
valued the opportunity to act as a voice for people with IBD and produce a paper that
reflects some the varied experience of IBD Wellbeing.
Conclusion

This experience of patient involvement as a collaborative process has been rewarding

for the PPI group, allowing them to provide a voice to the survey comments and
produce something meaningful. It highlighted to the group that their experiences are just
that, their own, and that despite the group's best efforts to capture the variation, there
will always be more to understand.

Although it is rewarding to have the patient involved in the decision-making process

around research and to have their voices represented in this paper, the group would like
to see wider impact of this work steering conversations in new ways. In particular,
around the clinical-research community where co-produced and patient-led models are
perhaps not frequently seen as beneficial or worthwhile.

The PPI group would like to thank the survey respondents for giving up their time and
detailing their experience of wellbeing with IBD for the purposes of this study. The group
would also like to thank Dr Gwo-Tzer Ho for allowing them to ‘take the reins’ of this
research and produce work that platforms the voice of people with IBD.
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