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Symptom Severity and Psychological Distress in IBD Patients 1
Reducing Symptom Severity in Patients with Inflammatory
Bowel Disease by Treating Psychological Distress
Danielle R Olson
Kent State University

Inflammatory Bowel Disease, or IBD, is a disease of the digestive system
that has debilitating symptoms, and patients are usually given several types of
incredibly strong prescriptions that often have their own adverse side effects. Aside
from severe physical symptoms, the disease is often accompanied by negative
psychological symptoms as well. In fact, research has shown that there is a
correlation between psychological distress and the severity of symptoms in patients
suffering from IBD. However, there is currently no positive treatment or
standardized psychological support for these patients, with the main focus primarily
on pharmaceutical and biological aspects. In this proposal, an intervention will be
developed and administered to newly diagnosed patients in an effort to decrease
psychological distress and in turn, hopefully decrease the severity of physical
symptoms that accompany the disease.
Definition
IBD is a chronic autoimmune disease that affects the digestive system,
causing severe inflammation of the smooth muscles and lining of the digestive tract.
(CCFA) In autoimmune diseases, the immune system mistakenly attacks healthy
cells and tissues in different areas of the body. The inflammation seen in IBD is
caused by the body’s immune system attacking the digestive tract. This causes
irritability and sensitivity in the bowels due to the body’s inability to regulate the
immune system. (Porcelli & Leandro, 2007) This inflammation causes severe and
often incapacitating symptoms. There are no known causes or cures for the disease,
and patients’ experience lifelong periods of relapses and remissions. Patients are

faced with lifelong unpredictability and current treatments focus on medication to
achieve and prolong remission. (Rochelle & Fidler, 2012)
There are two specific types of IBD, Crohn’s disease and Ulcerative Colitis. Crohn’s
disease, which is typically the more severe of the two, is characterized by inflammation and
symptoms anywhere in the digestive tract, from the mouth to the rectum. The severe
inflammation can cause scar tissue leading to bowel blockage, deep tissue ulcers, and fistulas,
which are abnormal passageways from the digestive tract to nearby tissue and organs. (Cleveland
Clinic, 2016) Those suffering from Ulcerative Colitis, or UC, experience the same type of
inflammation, but it is primarily restricted to the large intestine and rectum rather than the entire
digestive tract. UC is characterized by “tiny ulcers and small abscesses…that flare up
periodically and cause bloody stools and diarrhea.” (Cleveland Clinic, 2016) Both diseases are
diagnosed by undergoing a number of tests including endoscopy, blood tests, stool samples,
barium x-rays and colonoscopies, MRIs, and CT scans. (Cleveland Clinic, 2016)
Historical Misconceptions & Stigmas
Until recently, there have been a number of misconceptions and stigmas that prevented
the understanding and treatment of these diseases. When it was first recognized as an illness in
the early 1900’s, IBD was thought to be a psychosomatic disorder, meaning that the cause and
symptoms that were physically expressed came from a psychological origin. Stress, psychiatric
disease, and psychological illness were regarded as the only cause, with no attention or
acknowledgment given to a possible biological origin. (Porcelli, Leoci & Guerra, 1996) Patients
experiencing symptoms of IBD were often institutionalized for insanity. Others felt that the
disease was a manifestation of a hostile family dynamic. Some doctors and researchers felt that
an unstable relationship with one’s mother could eventually lead to a rage filled implosion that

manifested as an upset of the digestive system. (Gerson, Grega, & Nathan-Virga, 1993)
However, research and medical advancements have since shown that IBD is in fact an organic
disease, helping to prove that symptoms and flare-ups have a biological basis and are not a
mental manifestation. The nature of the symptoms stemming from IBD also make it difficult to
discuss and therefore can hinder diagnosis and research. Due to society’s reluctance to discuss
bodily functions, it is not surprising that patients would be embarrassed to discuss the symptoms
and difficulties they face, even with medical professionals. (Hatch, 1996) This stigma makes
talking about the disease embarrassing for patients and can create psychological distress. It has
been discovered that physical, as well as psychological stress, can have devastating effects on
patients with IBD.
Physical Symptoms
IBD can affect patients in a variety of different ways. The most obvious are the physical
symptoms that are experienced. The most common physical symptoms for both Crohn’s and UC
are chronic pain and fatigue, severe diarrhea, vomiting, rectal bleeding, malnutrition,
dehydration, and anemia. Others may include extreme urgency in defecation, body aches, muscle
cramps, perspiration, low appetite, malnutrition, weight loss, and fever. (Gerson et al., 1993)
There are also a number of physical symptoms external to the digestive system such as joint
pain, skin disorders and irritations, kidney and gallstones, swelling of the mouth and eyes, and
liver disease. (Cleveland Clinic, 2016)
Psychological Symptoms
Symptoms however, are not exclusively physical in nature. Having to deal with the
severity of the physical symptoms frequently experienced by IBD patients long-term

undoubtedly contributes to the psychological stress that also accompanies the disease. There is a
plethora of psychological symptoms that are experienced by patients with IBD. Anxiety and
depression are the two most common psychological disturbances found in patients and research
has shown that these can be a direct result from, and have a significant effect on the physical
symptoms presented by the disease. Research has shown that even though UC is no longer
thought to be psychosomatic in nature, psychological symptoms do largely contribute to the
course of the disease and to the patient’s quality of life. (Porcelli & Leandro, 2007) When given
assessments regarding stress associated with an ongoing medical condition, IBD patients
reported more disruption regarding psychological and social aspects than physical. (Drossman,
Patrick, Mitchell, Zagami, & Applebaum, 1989) This is not meant to downplay or discredit the
severity of the physical symptoms experienced by patients, but rather introduce and highlight the
importance and impact that psychological symptoms have on the patient’s well-being. This also
helps to introduce the correlation between a patient’s level of psychological distress and
symptom severity. Guthrie, Jackson, Shaffer, Thompson, Tomenson, & Creed all recorded
evidence showing an increase in psychological distress following an increase in physical
symptoms. (2002) Gerson et al. discuss how stress can be a causative factor, but only if there is
an underlying and biological predisposition. (1993) The major finding in the study done by
Porcelli, Leoci, and Guerra (1996) was that there is an overwhelmingly strong correlation
between symptom severity and the amount of psychological distress experienced by patients with
IBD.
This type of psychological stress cannot only exacerbate physical symptoms, but affect
how the patients sees themselves and their ability to control the disease. Personal perceptions can
play a contributing factor when it comes to patient’s psychological health. Negative personal

perceptions can especially cause an increase in psychological disturbances. Fear of symptoms
and public embarrassment, along with the fear of the inability to manage those symptoms and
control the disease can be incredibly stressful. This will not only increase the chance for
symptom severity due to increased stress, but will have a huge impact of the patient’s quality of
life, or QOL, from a personal and social standpoint. In a study done by Hall et al., (2005)
Interviewees saw their illness in terms of their bodies being ‘under attack’ by an
inconvenient, chronic, smelly, painful, and embarrassing disease. IBD was seen as an
unpredictable illness responsible for restriction in activity or freedom and affected all
aspects of everyday life. This included social and family relationships, fulfilling roles
such as caring for the family as well as social activities, work, travel, shopping and even
in some cases simply leaving the house. (p. 446)
When the normality of everyday life is disrupted, this can bring on depression, anxiety,
and feelings of hopelessness, all of which decrease a patient’s QOL. Increased fear, depression
and anxiety can also lead to social avoidance and isolation. Hall et. al. noted major issues among
patients to be a fear of bowel incontinence and avoidance of social situations, both of which
create a deficit in both physical and psychological control. (2005) Gerson et al., (1993) further
discussed how the disease can have a social impact on patients’ lives by stating that due to the
lifelong unpredictability of the disease, the patients are constantly preoccupied with avoiding
public embarrassment caused by disease symptoms, which makes forming healthy relationships
with others difficult. Disease knowledge and perceived control over the disease also had an
impact on QOL. As reported by Rochelle and Fidler, (2012) patients who did not understand the
lifelong consequences had a higher QOL score than those who were educated to the disease’s

progression and prognosis, and those who felt in control of the disease had higher QOL scores
that those who did not feel in control.
In extreme cases, the psychological disturbance experienced from IBD symptoms can be
so severe that an independent psychosomatic disorder called Bowel Obsession Syndrome can
develop. Bowel Obsession Syndrome, or BOS, is a relatively new diagnosis, gaining medical
recognition approximately twenty years ago. The clinical characteristics of BOS as described by
Porcelli and Leandro are,
 Overwhelming and irrational severe fear of fecal incontinence
 Ideational rambling over bowel habits, ranging from possible public humiliation
to perceived unavailability of bathrooms outside the home
 Compulsive behaviors aimed at maintaining body control, including spending
excessive amounts of time on the toilet and restricting food intake
 Various symptoms that overlap a number of disorders, including panic disorder,
social phobia, specific phobia, or agoraphobia without panic symptoms (2007)
Although extreme and rare, BOS is an excellent example of just how influential the
psychological symptoms that accompany IBD can be. In the case study done by Procelli and
Leandro (2007), the patient was diagnosed with IBD, an prescribed a treatment plan by his
doctor that included a very restrictive diet, lifestyle free of toxins (alcohol and tobacco), and total
avoidance of sexual and physical activity. This extreme treatment plan and lack of education on
the actual disease caused crippling fear and social isolation. As a result, “the patient began to
develop a deeper fear of leaving home and compulsive rituals of defecation-checking.” (Procelli
and Leandro, 2007)

In the case studies of BOS done by Hatch, (1996) social isolation and public
embarrassment are also discussed. Circumstances that were seen as the most stressful were those
that did not have a public restroom available such as driving on the highway, densely populated
public events, and public buses and trains. Hatch (1996) also noted that the deeply overwhelming
fear of accidental public defecation prevented patients from leaving their home and developing
social lives. Although these cases of BOS are rare, psychological distress brought on by physical
symptoms in patients with IBD are not. Clearly, treatment is needed to cure both the physical and
psychological aspects of this disease.
Current Treatments
The main focus in current treatments for IBD have a very strong pharmaceutical and
biological focus. The aim of current treatments is to get to and stay in a period of remission for
as long as possible. While controlling the physical symptoms and preventing relapses is a critical
part of treatment, little to no emphasis has been placed on psychological treatments. The most
common form of treatment is pharmaceutical medication, and if symptoms and disease
progression are severe, surgery. When patients were questioned by Hall et al. (2005) as to how
they were treating and controlling their disease and its symptoms, pharmaceuticals and diet
restrictions were seen as the main ways to obtain or achieve some level of control. The patients
also listed other strategies, some negative and some positive, regarding how they coped with
symptoms. The most common negative strategies were, “situational avoidance, planning outings
around toilet availability,” and “keeping secret about the disease”. (Hall et al., 2005) The positive
strategies listed are: “adapting or learning to cope, information seeking, social support seeking,”
and “seeking healthcare.” (Hall et al., 2005) It is clear that the majority of strategies, whether
positive or negative, focus on physical symptoms, and little regard is given to treating

psychological symptoms even by patients. This could be a direct result from the medical
community lacking information regarding psychological distress and its relationship with disease
and symptom severity.
Since medication is the primary form of treatment, it is worth noting what kinds of
medication are most commonly prescribed and what effect they have on IBD sufferers. During a
flare-up, IBD patients are often prescribed corticosteroids. This is an orally or rectally
administered anti-inflammatory drug that reduces swelling in the digestive tract and can bring on
remission. It is not however, prescribed for long term use due to its many and somewhat severe
side effects. Side effects include, but are not limited to: weakening of the bones, increased facial
hair, weight gain, mood swings, and psychosis and other psychiatric symptoms. (CCFA, 2015)
Although the side effects of this immune suppressing drug can actually increase psychologic
distress, therefore increasing symptom severity, it is still one of the most commonly prescribed
medications.
Other common medications include 5-aminosalicylic drugs, which reduce inflammation,
and immunosuppressants, which lower immune system functioning are often used to treat IBD
but can leave patients highly susceptible to infections. Biologics, or biological therapies are most
often used for moderate to severe disease activity. “Biologics are antibodies grown in the
laboratory that stop certain proteins in the body from causing inflammation.” (ccfa.org, 2015)
Biological therapies are created to be disease specific, and while the have fewer possible side
effects than other commonly prescribed medication, the ones that they do have can be much
more severe. While side effects from biologics usually only occur while taking other
medications, most IBD patients take several prescriptions simultaneously. Side effects from

biologic can include increased cancer risk, liver problems, lupus-like reactions, and nervous
system disorders. (ccfa.org, 2015)
If medications fail to treat the disease, the only other option is surgery. Surgeries can
include a full colectomy, a proctocolectomy, a permanent ileostomy, or an ileal pouch,
depending on the disease’s progression and severity. (Cleveland Clinic, 2016) While these and
other medications can help to prevent flare-ups and maintain remission, they do not serve to
alleviate the psychological symptoms if IBD. Pharmaceutical treatment alone is not enough to
help patients maintain a high QOL. The focus then, rather than relying heavily on strong
medication, should be on developing and administering a treatment that can help to alleviate the
symptoms and control the disease without the harmful, severe, and invasive side effects that are
currently available. Research has shown correlations between psychological distress and
symptom severity, therefore, if physical and psychological aspects play a role in disease
progression, why are we not treating both, rather than just the physical?
Treating with Psychology
There is evidence showing that treating psychological symptoms can be an effective way
of managing the illness and increasing the QOL for patients. By treating the psychological
symptoms and decreasing psychological distress, it is proposed that the symptom severity will
decrease and that patient QOL will increase. Rochelle and Fidler, (2012) stressed the need of
addressing the psychological and well as the physical aspects when discussing any type of
chronic disease. There is obviously more to IBD than strictly biological and physical elements.
Therefore, a multi-faceted disease needs a multi-faceted treatment approach.

By using a biopsychosocial model of treatment, a patient can receive treatment in all
areas of life that is affected by the disease including, physical, mental, and social aspects. This
approach has been suggested in other research as well. Drossman, (1996) supports a
biopsychosocial treatment approach in his study and discusses how this will best help to find
suitable treatments for the disease. Research done by Seres, Kovacs, Kovacs, Kerekgyarto, Sardi,
Demeter, et. al., shows that disease activity and symptom severity are the factors affecting
patients the most. (2008) If it is acknowledged that psychological distress has a direct impact on
symptom severity, and that symptom severity is one of the most important factors for patients, it
stands to reason that they should be receiving treatment for the psychological distress caused by
the disease. This point is best demonstrated by Guthrie, et al.,
The presence of psychological disorder in inflammatory bowel disease contributes to
poor health-related quality of life, regardless of the severity of the condition. Detection
and treatment of psychological disorder in inflammatory bowel disease carries the
potential to improve health-related quality of life for these patients. (2002)
In the case study done by Porcelli and Leandro (2007) regarding BOS, treatment was
successful and used a collaboration of healthcare professionals working together, including a
gastroenterologist, psychiatrist, and psychologist. Hatch (1996) gives yet another example of
how this biopsychosocial approach can be effective by stating that using therapy along with
biological treatments prove to be the most successful. While these are small and isolated cases, it
is believed that a standardized program of education, social support, and psychological screening
and treatment can be developed for a widespread application to newly diagnosed IBD patients in
an effort to decrease psychological distress and symptom severity.

Introducing Additional Treatments
Illness education is a crucial part of helping patients to cope and accept this disease.
Being diagnosed with a chronic, lifelong illness and not understanding the implications of that
diagnosis are sure to cause some level of anxiety. Very few newly-diagnosed patients have ever
heard of the disease, and those who did have knowledge did not hold a deep understanding. (Hall
et al., 2005) This shows a strong educational and informational foundation is critical to patient’s
confidence in understanding the disease and feeling able to manage it. However, care must be
taken in exactly how this information in administered. In one study by Rochelle and Fidler,
(2012) it was demonstrated how patients that had a good understanding of their disease had
higher levels of anxiety than those who did not have a good understanding. It is proposed that the
reason for this correlation is due to the fact that having a good understanding of the disease also
means that patients have been informed on the limited number of treatments available. It is
hypothesized that by administering education along with psychological support, that the
correlation between knowledge and anxiety will weaken. In the same study, Rochelle and Fidler
(2012) state that they encourage disease education, and patient understanding will increase
patients’ confidence and sense of control.
Introducing and teaching different coping mechanisms is another way to increase patient
control and confidence. Educational programs made specifically for IBD patients are thought to
be potentially beneficial regarding personal perceptions. (Rochelle & Fidler, 2012) By
introducing stress relieving techniques and learning how to lower anxiety levels, the patient may
have less symptom related psychological stress. Social support is another fundamental part of a
successful integration plan. By creating support groups for patients with IBD, whether in person
or online, being able to discuss the emotional and physical difficulties of the disease with other

patients could prove to be therapeutic and beneficial. Social awareness may be the most difficult
part for patients to deal with. Trying to explain the disease and symptoms to others can be
difficult and embarrassing. By giving patients tools and ideas on how to educate others, this
could help to alleviate a large source of the patients stress and anxiety. Studies have shown that
there are a common set of concerns that most IBD patients share. These include normality of
personal health, restrictions on personal freedom, disease control, coping strategies, self-
management, reluctance to confide in physicians, and a wide knowledge range. (Hall et al.,
2005) This intervention hopes to address these concerns.
Psychological screenings could be the most critical and important part in preventing or
helping to reduce psychological distress in IBD patients. The best place for this screening to be
administered would be in the gastroenterologist’s office. By performing this screening at the time
of diagnosis, physicians would be able to see signs of distress much sooner and could refer
patients to a mental health professional to receive treatment before the symptoms become severe.
As mentioned in Guthrie et al., (1998) being able to receive a psychological assessment in the
gastroenterologist clinic would be both appropriate and beneficial. By using cognitive
restructuring and behavioral therapy, the patient in Porcelli and Leandro’s (2007) study no longer
experienced OCD-like symptoms and was able to leave their home without fear, anxiety, or
depression. Patients have shown to be more than willing to take an active role in disease
management. The majority of interviewees in the study by Hall et al. stated that they would in
fact prefer a treatment program where they could self-manage their disease with the help of their
doctor. (2005) If given the right set of tools and information, patients will not only be more at
ease and confident, but ready to take a more involved and proactive role in managing their
disease.

Proposed Intervention
In an effort to accomplish these suggested goals, an intervention will be introduced in an
effort to help newly diagnosed IBD patients lower their psychological distress and in turn
decrease the severity of their symptoms. This intervention will include illness and disease
education, coping mechanisms, social support and awareness strategies, and psychological
screenings and referrals. By introducing psychological treatments and implementing this
biopsychosocial approach, it will help to give patients a more complete treatment plan than what
is currently available.
By providing psychological support along with educational tools, it is hypothesized that
symptom severity will decrease among newly diagnosed patients, compared to those patients
who are newly diagnosed and not given additional psychological treatment.

Method
Participants
The population that will be included in this study will be an equally represented amount
of both men and women ranging in age from 18-30, as it is most common for IBD patients to be
diagnosed with the disease during this age range. This disease affects both men and women and
most patients are diagnosed before the age of 30. (CCFA, 2015) This sample will included newly
diagnosed IBD patients only, in an effort to see if the intervention will be successful when
presented with the diagnosis and part of treatment and education. For this study, we will obtain
an N of at least 34, based on a ∝ of .05 and power of .8. While a minimum of 34 subjects in
required, our goal is to obtain an N of 50.
Materials
Educational Materials. Educational pamphlets discussing the disease symptoms,
treatments, and available support will be administered along with a list of contacts which provide
free support to IBD patients such as the CCFA and Cleveland Clinic websites. These will be
mailed to the patients after completing an online registration.
Disease Severity. Severity of symptoms will be measured using the CDAI (Crohn’s
Disease Activity Index, 2011), which calculates a patient’s symptoms, medication use, and
general well-being. This assessment uses both “yes” and “no” questions such as, “has the patient
in the last 7 days, taken any anti-diarrheal drugs?”, and a Likert scale of 0-3 or 4. A sample
question of this nature asks the patient to rate his or her general well-being on a scale of 0-4. This
scale is used by both doctors and researchers when assessing IBD symptom severity.
(http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0048967/)

Psychological well-being. Patients will be screened for depression, anxiety, and panic
disorders. Depression screening will be done using the Patient Health Questionnaire-9 (PHQ-
9) developed by Spitzer, Williams, Kroenke, and colleagues in 1998. It is a 4 point Likert scale,
ranging from not at all to nearly every day. Samples include, “little interest or pleasure in doing
things”. Anxiety screening will be done using the Diagnostic and Statistical Manual of Mental
Disorders, Fourth Edition developed by the American Psychiatric Association, 1994. It is a yes
or no scale of 18 questions. Sample includes “inability to control worry”. Panic disorders will be
screened using the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition.
Washington, DC, American Psychiatric Association, 1994. This is a yes or no scale consisting of
27 questions. Samples include, “repeated or unexpected “attacks” during which you suddenly are
overcome by intense fear or discomfort for no apparent reason”. All three of these assessments
can be found on the Anxiety and Depression Association of America’s website. Screenings will
be done at the initial time of diagnosis, and again after the 1 year study period to see if symptoms
were reduced.
(http://www.adaa.org/living-with-anxiety/ask-and-learn/screenings)
Procedure
Subjects will be recruited through Cleveland Clinic Gastroenterologists. Any patient
receiving a new diagnosis of IBD will be given the opportunity to participate in the study given
they meet the sample parameters. Upon agreeing to participate in the study, patients will be
given information on how to sign up online. Since the registration and majority of
communications will take place online, internet access will be required. Patients will sign up
online and receive educational materials via the mail. They will meet at a scheduled time for the
screenings to be administered both before and after the study period. After the initial screenings

are complete, participants will partake in weekly scheduled support activities, whether online
chats, group meetings, or one on one psychological sessions. Consent and confidentiality forms
will be administered and filled out online as well. All participants will receive a $50 Amazon
Gift Card at the initial screening and for every scheduled activity they complete. The study will
last a time period of one year.

Budget
Personnel
1 Primary Researcher @ 50,000 per year x 1 year = 50,000
1 Graduate Assistant @ 15,000 per year x 1 year = 15,000
Total 65,000
Materials
Initial registration packet administered @ clinic x 50 = 69.99
Participation Manual and contact info x 50 = 497.75
Educational material in binder x 50 = 756.00
Support group/network pamphlet x 50 = 158.50
Total 1,483
Participants
Initial and Final Screenings @ $50/screening x 50 participants
x 2 screenings = 5,000
Weekly Meetings @ $50/meeting x 50 participants
x 50 meetings = 125,000
Total 130,000
Total Expenses 196,483

References
The Cleveland Clinic Foundation. (2012) Ulcerative Colitis. Retrieved from:
http://my/clevelandclinic.org/health/diseases_conditions/hic_ulcerative_colitis
The Cleveland Clinic Foundation. (2016) Crohn’s disease. Retrieved from:
http://my/clevelandclinic.org/health/diseases_conditions/hic_inflammatory_bowel_diseas
e_ibd_quanda/hic_crohns_disease
Drossman, D., Patrick, D., Mitchell, C., Zagami, E., Appelbaum, M. (1989). Health-related
quality of life in inflammatory bowel disease: Functional status and patient worries and
concerns. Digestive Disease and Sciences, 34(9), 1379-1386.
Gerson, M., Grega, C., Nathan-Virga, S. (1993). Three kinds of coping: Families and
inflammatory bowel disease*. Family Systems Medicine, 11(1), 55-65.
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Psychological disorder and severity of inflammatory bowel disease predict health-related
quality of life in ulcerative colitis and Crohn’s disease. The American Journal of
Gastroenterology, 97, 8.
Hall, N., Rubin, G., Dougall, A., Hungin, A.P.S., Neely, J. (2005). The fight for ‘health-related
normality’: A qualitative study of the experiences of individuals living with established
inflammatory bowel disease (IBD). Journal of Health Psychology, 10(3), 443-455.
Hatch. M. (1995). Conceptualization and treatment of bowel obsessions: two case reports.
Behaviour Research and Therapy, 35(3), 253-257.

Irwin M. and Suzanne R. Rosenthal IBD Resource Center. (2015, January). CCFA Fact Sheet
News from the IBD help center: Biologics. Retrieved from: http://www.ccfa.org
Irwin M. and Suzanne R. Rosenthal IBD Resource Center. (2015, January). CCFA Fact Sheet
News from the IBD help center: Corticosteroids. Retrieved from: http://www.ccfa.org
Mesalamine. (2009). Retrieved from: http://www.drugs.com/ppa/mesalamine-5-aminosalicyclic-
acid-5-asa.html
Porcelli, P., Leoci, C., Guerra V. A. (1996). A prospective study of the relationship between
disease activity and psychologic distress in patients with inflammatory bowel disease.
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Psychosomatics, 48, 448-450.
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