Keywords

inflammatory bowel disease, irritable bowel syndrome, qualitative research, women

 

Authors

  1. Skrastins, Olivia BA
  2. Fletcher, Paula C. PhD

Abstract

Purpose: This study aimed to explore the lived experiences of women diagnosed with inflammatory bowel disease and/or irritable bowel syndrome enrolled in postsecondary education.

 

Methods: Nine women aged 18 to 26 years participated in this study. Data collection consisted of an informed consent form, a background questionnaire, and a semistructured one-on-one interview. This interview explored the lived experiences of these individuals regarding perceived positive and negative effects of living with these conditions.

 

Results: Salient themes that emerged from the data were (1) "It can add to my life," (2) "Why me?: My condition runs my life," and (3) "I'm doing the best I can with what I have." Themes 1 and 2, the themes addressed in this article, were subdivided into (1) change in perception of self, condition, and others and (2) healthy lifestyle and (1) unpredictability and inconsistencies of inflammatory bowel disease/irritable bowel syndrome, (2) lack of understanding, and (3) the inconvenience of inflammatory bowel disease/irritable bowel syndrome, respectively. All participants expressed both positive and negative effects of living with their conditions.

 

Conclusion: Community health nurses should be aware of the positive and negative effects of living with these conditions to help build relationships and assist with condition management. Other implications are discussed.

 

Article Content

Canada has one of the highest rates of inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) worldwide.1 There are an estimated 233 000 Canadians2 and 1.4 million Americans living with IBD3 and 5 million Canadians1 and between 25 and 45 million Americans living with IBS.4 Inflammatory bowel disease consists of 2 main forms: Crohn's disease (CD) and ulcerative colitis (UC).2 Both forms are inflammatory conditions that can cause weight loss, fever, and rectal bleeding.5 Irritable bowel syndrome is another gastrointestinal condition that affects the bowel and may cause diarrhea and/or constipation.6 Both IBD and IBS share similar signs and symptoms such as bloating, diarrhea, early satiety, fatigue, constipation, and/or abdominal pain,2,5,7 but there are no structural or biochemical abnormalities in individuals with IBS.8 Despite available treatment options to address IBD and IBS, there is no cure for either condition, and both conditions can influence health-related quality of life.9-11

 

Health-related quality of life encompasses the physical, social, emotional, and general health domains of well-being.12 Individuals with IBD and IBS exhibited lower scores in health-related quality of life.9-11 Pain, fatigue, adverse effects of medication, active times of disease, and stress from hospital visits may hinder individuals with IBD from participating in activities or sports.13-15 Irritable bowel syndrome can also have a significant effect on social life, such as missing activities or events because of symptoms.15-17 In addition, individuals with IBD/IBS reported missing work and not being able to travel due to symptoms.13,18 Other concerns that affect individuals with these conditions include a negative body image,14,18 finding an available toilet,17-20 and lack of control.15,17 Psychological comorbid variables, such as anxiety in some cases, are also associated with a lower health-related quality of life in individuals with IBD.21 Individuals with IBS also reported negative emotions related to their condition, namely, anger, embarrassment, anxiety, and fear.16-18 Economic burdens may affect individuals with IBD as a result of medical bills, doctor's visits, tests, and obtaining insurance, all of which can be costly,13,17 as well as individuals with IBS who frequently buy over-the-counter medications.16

 

Although many negative effects of IBD/IBS have been reported, limited research concerning the positive effects of these conditions exists. Wolfe and Sirois (2008)13 examined participants with IBD who reported that having their disease motivated them to develop more effective coping mechanisms (eg, better eating and exercising habits, effective time management). Selecting healthy food choices was another positive consequence of IBD/IBS identified in Author Fletcher and Schneider's (2006),22 which examined coping strategies of individuals with IBD and IBS. Overall, research on how IBD and IBS can both positively and negatively affect the lives of individuals can aid healthcare professionals in understanding how to assist individuals with condition management and foster relationships with these individuals.

 

Purpose

The purpose of this study was to examine the lived experiences of female postsecondary students aged 18 to 26 years diagnosed with IBD and/or IBS and how they viewed their diseases. Three salient themes emerged upon analysis: (1) "It can add to my life," (2) "Why me? My condition runs my life," and (3) "I'm doing the best I can with what I have." Themes 1 and 2 will be addressed in this article. Theme 3 has been published in Author, Skrastins and Fletcher (2016).23

 

METHODS

This qualitative study used a heuristic phenomenological approach, which is a subjective process that aims to understand a deeper meaning of a phenomenon.24 The researcher and the participants should have experience with the phenomenon, and the researcher should have an emotional connection with the phenomenon being studied.24 The primary author has had IBS for 5 years, whereas the second author has had IBS for 20+ years and has researched IBD/IBS for 10+ years. Ethical approval by a university research board was obtained before participant recruitment and data collection.

 

There were 9 participants in this study: five had IBS, two had CD, and three had UC. Eligibility criteria were as follows: participants had to be female, between 18 and 26 years old, and enrolled in postsecondary education and have a formal diagnosis of IBD or IBS from a physician. Participants were recruited through purposeful, criterion, snowball, and homogenous sampling methods.25,26 Participants read and signed an informed consent form, completed a background questionnaire, and then participated in a one-on-one semistructured interview. The interview consisted of open-ended questions with probes, an interview format used in qualitative research.27 The interviews were audiotaped and transcribed verbatim, and participants were assigned pseudonyms to protect their anonymity.

 

After transcription, text segments from the interviews were coded and distilled into themes to determine whether saturation was achieved.28 Verification strategies such as member checks, triangulation, saturation, and constant revision of themes were used to ensure rigor. The credibility of the study was enhanced through the use of method triangulation and investigation triangulation.29 For a more detailed description of the methodology used in this study, please refer to Author, Skrastins and Fletcher (2016).23

 

FINDINGS

Background Information

Of the 9 participants, 8 women reported food-related triggers, and all women reported stress as a trigger. Six women also reported having comorbid conditions such as eating disorders, anxiety disorders, and ovarian cysts. All participants shared descriptive accounts of how living with IBD/IBS positively and negatively affected their lives. A more detailed summary of each participant's background information can be found in the Table. The 2 themes that will be discussed in this article are (1) "It can add to my life" and (2) "Why me? My condition runs my life."

  
Table Description of... - Click to enlarge in new windowTable Description of the Participants

It Can Add to My Life

All participants reported positive effects of living with IBD/IBS. These positive effects were subdivided into 2 subthemes: (a) change in perception of self, condition, and others and (b) healthy lifestyle. Each subtheme will be discussed in turn.

 

Change in Perception of Self, Condition, and Others

Eight of the 9 participants reported that living with their conditions has positively changed their perspectives of themselves, their conditions, and/or others. Some participants felt that they were mentally stronger as a result of dealing with the challenges of living with their conditions.

 

I realized that this could be so much more than just something that was just taking away from my life, it can add to my life. And now I look at it, not in anger, but more as it's made me a stronger person, like 100% because of my Crohn's, I am a very different person than I would have been if I had never been diagnosed. -Brooke

 

I think I've become mentally resilient. [[horizontal ellipsis]] it's been really hard to deal with and you know [[horizontal ellipsis]] I think I've really taken my health for granted for sometimes when I'm well and its really um, I think it forced me to-to mature a lot, to face a lot of um decisions and to um be independent in a sense. And feel confident and um make some really hard decisions like I think there's as much as is blatantly just right out sucked, it's been-there's-there's positives that have definitely that have come out of it. And it-and it is something that I need to look back and be proud with I think. -Tiffany

 

[[horizontal ellipsis]] emotionally, I guess it's been more positive after I got over the fear of telling people, which was a while ago. But, I know if I was still very, like I know that it can be very depressing for people who are less open than I am. That's actually one of the biggest things I've heard with irritable bowel syndrome is that people can get very depressed from it because it's not like what you want to go talking about with people. But I think it's had a more positive impact on me just because I don't let that affect me, so it's-I'm just happier when I'm more open, why bother hiding it. -Annie

 

One participant also mentioned that she developed a better understanding of her condition, which has led to a greater respect for her body.

 

I kind of appreciate my body more [laughs]. And kind of just-you don't like-like before you kind of get this condition, you don't really realize that it like-what it's affecting, and it's affecting your entire body at all times. Not just your digestive system, it's everything. And anyone with IBS or IBD would understand that. That it's like you learn to like respect every little thing that your body does for you a lot more. -Candice

 

Some participants also reported that having their conditions changed their perspectives on others and gave them a better appreciation and understanding of what other people may go through. This compassion and awareness were evident in the following quotes:

 

Yes I feel like I've been more positive after having IBD. More compassionate to other people who have not only IBD, but any type of disability condition in general. Um, so being a PT I want to work with those who are less able bodied like spinal cord injury patients, um maybe even women's health, that sort of thing. Trying to sort of imagine how it would be in their lifestyle knowing what I have that changed mine. Um, so helping other people in that aspect. So definitely more emotionally that way. Also, just overall optimism. I'm grateful that um it's not as severe as other people. I'm in remission for most of the time. And I don't have to get you know IVs, Humira, things like that so. -Stephanie

 

I think I've become more understanding of like-I mean I wasn't really as understanding of my mom at first so I didn't really understand and like, we used to get in some fights sometimes. And she'd be like you need to stop because you're stressing out and it's hurting my stomach, and I would just keep going. So now I understand so I think I'm more of an understanding person now than I was before. -Grace

 

Overall, almost all participants experienced a change or realization of how they perceived themselves, their conditions, and/or others. Despite the challenges that may occur living with IBD/IBS, the women acknowledged that these changes were positive.

 

Healthy Lifestyle

Six participants reported that they had developed a healthier lifestyle after being diagnosed with IBD/IBS. For most of the women, they consumed healthier diets to avoid foods that aggravated their conditions (eg, fried food, processed food). Women also reported that eating healthy was a positive aspect of living with IBD/IBS.

 

My condition doesn't allow me to go eat like food outside-or like fried foods or unfamiliar foods and so I guess that's the one positive thing, keeps me very like healthy and routine. -Jessica

 

I feel like it's made me kind of a healthier person because with the diet that I'm on, there has been a lot of things that have been cut out that aren't necessary-because a lot of the processed foods trigger it so I'm more like-I'm better at what I eat now. I'm not like-not that I didn't have a bad diet before-but it's much healthier than it was before so. -Grace

 

Uh it opened a lot of doors for me um because I started to notice that I was paying a lot more attention to my health. Um, my diet has changed completely and it's probably-I have always been a healthy eater-but it's probably gotten even healthier -Danielle

 

Apart from modifying diet, Brooke expressed that having CD also led her to adopt a healthier lifestyle through exercise and stress management, which has not been entirely successful yet but displayed positive lifestyle changes of someone living with CD.

 

Right now, I haven't experienced severe, severe pain to the point where I think I need to go to a doctor so I'm trying to deal with my Crohn's in a different way now, which is exercising and eating healthy, trying to de stress, yoga. Um, it's currently not working but we're still trying. -Brooke

 

Other participants also discussed exercise and its positive effects on the body such as gastrointestinal motility, and mental and emotional well-being.

 

And also um my family physician also taught me like exercises or like positions to hold-like you like lie on the ground and have certain positions to hold in order to like stimulate or contract your intestine. So I don't know if those helped specifically but exercise has. -Jessica

 

I wish I exercised more because I know that helps it. I also know that it helps your mental and like emotional state as well. -Annie

 

As expressed by the participants, a positive aspect of living with IBD/IBS is the effect it has on diet and on other activities that contribute to overall health such as exercise. These women all shared what they perceived to be positive aspects of living with IBD/IBS and how these aspects affected their well-being.

 

Why Me? My Condition Runs My Life

Although all participants mentioned positive aspects of living with IBD/IBS, every participant also reported negative aspects. Participants commented on the challenges associated with their conditions in relation to social, physical, emotional, mental, financial, education/work, and/or vacation/travel domains. This led to the development of 3 subthemes: (a) unpredictability and inconsistencies of IBD/IBS, (b) lack of understanding, and (c) the inconvenience of IBD/IBS. These subthemes will be discussed in turn.

 

Unpredictability and Inconsistencies of IBD/IBS

Eight participants commented on the unpredictability and inconsistencies of living with their conditions. Several women were concerned about the inconsistency of which foods triggered symptoms. This was very frustrating for participants and was perceived as a negative aspect that affected their lives.

 

I kind of stopped [writing] a food journal after like 17 years old, which was now 4 years ago. So I-I don't even know, like I should probably start it so I can know what my consistent triggers are again. But I really, I can't help you in this part because I just don't know what my constant trigger-I know it's like when I eat out, I typically get that but other than that like home cooked foods and what not, I don't know. -Annie

 

That's why like I used to think it was aggravated by food because when I go out and I'd go out for a dinner, I'd get really bad pains. And now even though it's less frequent, sometimes I'll have like a regular meal that I'll have every day, like salmon with salad or something, and just randomly one day I'll get bad stomach pains from it. -Jessica

 

[horizontal ellipsis]I can eat something one day and it's fine, and then the next day I'll have the same thing and I'll be sick. Like it doesn't have like a very-like they're obviously there is triggers, I just haven't really figured them out yet. But, yeah, like it'll just happen, like I said the one day I was like drinking juice, and I got sick and had to run to the bathroom. -Natalie

 

Along with the difficulty of identifying constant triggers, several participants also were concerned with the unpredictability of symptoms. These participants reported a lack of consistency with symptom occurrence.

 

[horizontal ellipsis]it depends on like the day and depends on what's going on because sometimes I don't experience the bloating or the gas or sometimes I do experience it. So it just like varies. -Grace

 

Sometimes I wouldn't even see a pattern I'd just be like "oh, my stomach is acting up again." But then when I like started doing a food journal and I started to realize, I would look back and be like okay, I put like a pain scale of 1-10. -Brooke

 

Candice found that she was constantly stressed about the possibility of having another flare, which often prevented her from running and going to school. She commented that this had a negative effect on her mental well-being because of the unpredictability of her condition.

 

Just because it's kind of always in the back of my mind, like am I going to get a flare up? Am I not going to be able to run now? Am I not going to be able to go to school? Because everything when I did have a flare up kind of got pulled out from right under me, like I wasn't able to really do anything. I kind of just sit there and watch everyone else do things. I guess in the back of my mind I'm always thinking like can't get sick. You can't get sick. You're doing too much, you know. -Candice

 

Several participants also expressed concerns about the unpredictability of symptoms and fear of another flare when traveling. Unfamiliar food and environments may cause participants to flare and have symptoms as expressed in the following quotes:

 

I'm going to Cuba in February. Am I nervous? Yes I'm terrified, I don't know how my body is going to react again. -Brooke

 

There are definitely those issues of-and those concerns like going on trips just because-especially if you're going down south or something, like the food you don't always know what it's going to have in it. And like, if you're going to spend the whole weekend sick. I know when everyone was planning their grad trips or whatever, like literally one of the things in my head I was like if I go on this, I guarantee I will get sick from the food and I will spend the whole week in the bathroom. Like that's not-I'm not spending my money on that. -Natalie

 

Most participants expressed that the unpredictability of IBD/IBS and inconsistencies of symptoms had negative effects on their lives. This uncertainty was stressful and frustrating and often resulted in absences from school or sport events and/or stress with traveling.

 

Lack of Understanding

Several participants reported that they found that other people were not understanding about their conditions and could not sympathize with the struggles experienced by participants. One participant expressed that her professor did not understand her situation and she perceived this contributed to her failing the course.

 

I ended up failing a class because of it, because I couldn't go and the prof was not understanding. And I didn't get a note from a doctor until like the end of the term and he didn't want to help me whatsoever so like when I don't have a prof that's understanding of what I deal with, it's extremely frustrating. -Grace

 

Other women found that people in their lives, such as their friends, were not understanding of their conditions. This lack of understanding had negative effects on their lives. The following quotes depict how the social lives of these women were affected:

 

I want to be able to eat normal food, and I want to be able to be like happy and go out for dinner and hang out with my friends [[horizontal ellipsis]] I can't do that. [[horizontal ellipsis]] I don't know. You don't think that it would because you think it's just [[horizontal ellipsis]] your stomach, but like it really does [[horizontal ellipsis]] You feel like if you talk to people about it, like people are just going to laugh at you and think it's like funny. And you're like no it's not. It sucks! Nobody gets how much this sucks! -Natalie

 

I find a lot of people aren't that understanding about it so you don't really want to talk about it. But then they're kind of like oh what's going on with you? And you tell them and they don't really get it and they're just like "oh you're being a baby, suck it up." And I'm like "ok[horizontal ellipsis]" [laughs] So it's just stressful when people aren't supportive of what you're going through or understand what you're going through. -Grace

 

How many times can you be told to put your disease on the back burner when it can sometimes control your life? So I definitely resented the people who told me that. And I still do sometimes. I'm like why are you telling me this? You do not understand. -Brooke

 

Whereas others may not understand what it is like to live with IBD or IBS, 1 participant reported that children being diagnosed might face similar misunderstandings about their own conditions. This may be due to their young age and inability to comprehend why certain foods have to be avoided.

 

[horizontal ellipsis]I feel bad mostly for children because it makes me wonder how they can ever understand it because they're so little. And you know at least we're old enough to understand and it's too bad when kids have it and they don't understand why they can't have the cupcake at their friend's birthday party or you know [laugh]. -Danielle

 

Almost all participants identified that their doctors (general practitioner [GP] and/or gastroenterologist [GI]) were not understanding of their conditions. In addition, some women reported that their doctors initially dismissed their symptoms, which delayed their diagnoses. Women also expressed that their doctors were not understanding of their particular choices to opt out of taking prescribed medications because they did not want to experience harmful adverse effects.

 

[horizontal ellipsis]there was a week in third year where I was sooo sick.[[horizontal ellipsis]] I'd drink juice and I'd be sick. And I was just like "ok this doesn't make sense. Like this is not anxiety. This is something else." So I kept like going and talking to my doctor, and they were like "no no, don't worry. It's just your anxiety, [[horizontal ellipsis]] it'll pass. -Natalie

 

[horizontal ellipsis]I had to ask my doctor multiple times to refer me to a GI. She initially didn't even want to refer me to a GI doctor. -Jessica

 

I know you have to disclose this but um, my doctor somewhat unfortunately um my-my gastroenterologist doesn't really-isn't really supportive of the eating and changing your eating habits because he's a doctor and it makes sense like let's just prescribe you medication. -Tiffany

 

[horizontal ellipsis]but then throughout the rest of high school and university, it was still the same. Like I would go in and tell him you know this is not getting any better but he wouldn't really do anything about it. Uh, and it wasn't until I started having blood in my stool in second year of university, two years ago, that I told him that and that's when he ordered me the sigmoidoscopy with the specialist because that wasn't normal. -Annie

 

As expressed by the women in this study, many people including professors, friends, family members, and doctors may have a lack of understanding about what it is like to live with IBD and/or IBS. This lack of understanding often has negative effects on the lives of women living with these conditions, which makes dealing with their conditions even more difficult.

 

The Inconvenience of IBD/IBS

The unpredictability of IBD and IBS results in symptoms occurring randomly, which is inconvenient to participants. Symptoms occurred during work hours, in class, or when going out with friends, which negatively affected their social lives.

 

[horizontal ellipsis]if I'm going to be working because I um usually serve so it's kind of like-you're worried of like what if you're taking an order and somebody's like and then you feel a flare up coming and it's like can't really stop what you're doing to go to the bathroom. -Grace

 

you still feel like you have that urgency to go to the bathroom. Or, if you're in class when all of this is happening and you have to go to the bathroom, trying to excuse yourself can make things awkward and difficult. -Annie

 

[horizontal ellipsis]it's hard because it's that social pressure to go out on the weekend and hang out with your friends. I mean you want to be there but the colitis is definitely limiting sometimes to what you can do with your friends on the weekends so. -Tiffany

 

When symptoms inconveniently appear (eg, in public), a few participants commented that they felt uncomfortable going to the bathroom in public places because of the noises, smells, and/or other unpleasant aspects of going to the bathroom. The participants experienced embarrassment or refrained from having a bowel movement, which aggravated their GI even more.

 

[horizontal ellipsis]when I'm out or something I don't feel comfortable going to the washroom when I'm out. Or if I'm out with friends and we're going out for dinner, I can't eat that dinner because I know it's going to aggravate my system. -Jessica

 

It's just sometimes I get like bathroom shy because you never know what sound or what smell is going to come out. -Grace

 

Um, I guess that would go back to the embarrassment perspective of smelling, still right now if there's anybody else in the bathroom and I've always been like this, um if there's anyone else in the bathroom I won't poop. -Stephanie

 

I don't enjoy going to campus when I'm ill, I'd rather be in the comfort of my own home. -Brooke

 

In addition to feeling discomfort in public washrooms, 2 participants also felt uncomfortable with their body images as a result of taking prednisone, a steroid that may be prescribed to reduce inflammation. Adverse effects of this drug may include sleep and mood disturbances, acne, and weight gain.30 The 2 participants in the following quotes had been on prednisone to treat their IBD.

 

[horizontal ellipsis]especially mentally to have to go through that and as a female, I know that sounds kind of ridiculous, but as a female you're always told to be feminine and do all of these things. And when you're on steroids, you're not. You're eating like triple your weight. -Brooke

 

[horizontal ellipsis]the worst part for me has been going on and off this prednisone. Is-my weight is like a yoyo and to be a girl in this society and in university with like the whole weight thing, it's made me really self conscious of my-my body and my weight. -Tiffany

 

Some participants stopped taking prednisone to avoid unpleasant adverse effects, whereas some continued despite the negative adverse effects.

 

Participants also reported the financial inconvenience of IBD/IBS. Financial strains included buying certain dietary foods that are costly on a student budget, medications that are not covered by insurance, and the cost of traveling to and from appointments. Those who indicated no financial stress did not have big medical expenses or were covered through insurance.

 

Just because the diet, because gluten and lactose products are so expensive. It's put-it's so expensive to make. And it's frustrating because before I could be on a budget of like $50 for groceries a week and now it's had to be upped to like 100 dollars because gluten products-gluten free products and lactose free products are so expensive. -Grace

 

So my medication is 100% covered under my parents insurance until I am 25 if I'm still in school. Um, that causes a source of stress though because what do you do when you graduate and you're 21, do you go back to school because you need to be covered under insurance so that your medication can be paid for or do you live the dream that you always wanted to? -Brooke

 

Overall, all 9 participants reported the inconvenience of living with IBD/IBS. Their conditions were unpredictable and inconsistent, which made it difficult to determine the foods that triggered their symptoms. Several participants also expressed that people did not understand their conditions, which was disheartening and often resulted in poor relationships with either friends, doctors, or other people in their lives. In addition, many participants felt uncomfortable about having to use public bathrooms because of the unpleasant symptoms of IBD/IBS and feeling uncomfortable with body image, which were perceived by participants to have negative effects on their lives. These symptoms were inconvenient to several participants and affected their day-to-day functioning. In addition, financial burdens associated with the diseases added more inconvenience and stress to the lives of these women.

 

DISCUSSION

This study explored the stories of 9 women living with IBD/IBS and how these conditions affected their lives both positively and negatively. Some of the positive aspects identified by participants were consistent with the limited literature on this topic. Participants in this study reported adopting healthier diets as a result of living with IBD/IBS. Participants changed their diets to avoid trigger foods and flares. Healthy eating has been identified as a positive coping strategy in other studies on individuals with IBD and/or IBS.13,22 Some participants in the current study also developed healthier lifestyles through exercise and/or stress management, which are positive effects also identified by Wolfe and Sirois (2008).13

 

Changes in perspective are other positive aspects of living with IBD/IBS that emerged from this study. Some participants reported that they perceived themselves differently and felt mentally stronger as a result of dealing with their conditions. For example, this stronger mentality led Annie to be able to feel more comfortable talking about her condition and also allowed Tiffany to feel more independent in making tough decisions. Candice also reported appreciating her body more as a result of living with UC. After experiencing IBD/IBS symptoms, participants reported having a better appreciation and understanding of what other people with IBD/IBS or other conditions may experience. The current literature is void of this potential positive effect of living IBD/IBS and should be examined in future studies. It is important for nurses and other healthcare professionals to be aware of the positive aspects of living with these conditions to better understand, educate, and help individuals manage their conditions. Whereas other studies have not addressed changes in perspective as a positive effect, positive thinking is part of a positive mindful coping strategy reported in McCombie et al's (2013)31 study on individuals with IBD.

 

Although participants reported 1 or more positive effects of living with IBD/IBS, participants also reported several negative effects of IBD/IBS including unpredictability of flares and inconsistent triggers, a lack of understanding from others, and inconvenient aspects of the conditions. Most participants reported unpredictability and inconsistency of IBD/IBS. This unpredictability was associated with not knowing when symptoms or flares would occur. Inconsistency generally pertained to trigger foods. Both of these issues frustrated the women and their ability to function daily. The unpredictability of symptoms and inconsistent triggers have been reported in other studies examining individuals with IBD and IBS.15,17,18 Furthermore, the unpredictable nature of both conditions created concerns with travel, a concern also reported by Farndale and Roberts (2011)18 and Wolfe and Sirois (2008).13 In addition, living with IBD/IBS may be difficult due to a lack of understanding from professors, friends, and doctors, as participants described. People who do not understand the nature of IBD/IBS and its symptoms may not be as accommodating or supportive. This lack of awareness can be frustrating for participants, and diagnosis and disease management can be delayed if doctors do not acknowledge initial symptoms and concerns. Farndale and Roberts (2011)18 reported that participants were frustrated with doctors who undervalued their concerns and contradicted each other, negatively affecting the doctor-patient relationship.

 

Another negative aspect that emerged in this study was the inconvenience of living with IBD/IBS. Some participants expressed that symptoms occurred during inconvenient times (eg, work, class), which disrupted their social lives. Tiffany also commented that her social life and ability to "hang out" with friends was limited by UC symptoms. These effects on social life have also been reported in several other studies examining individuals with IBD/IBS.13-18 When participants experienced symptoms, the thought of using a public washroom was devastating due to unpleasant symptoms associated with IBD/IBS. Women reported trying to avoid using washrooms. This avoidance behavior is supported by Farndale and Roberts (2011),18 Lonnfors et al (2014),19 Kemp et al (2012),20 Magalhes et al (2014),21 Author Fletcher and Schneider (2006),22 and McCormick et al (2012)17 as one of the negative effects of living with IBD/IBS. Participants felt uncomfortable with their body image due to the adverse effects of medications used to treat IBD. Brooke and Tiffany recalled the stress of weight gain from being on steroids and feeling self-conscious about body image. Farndale and Roberts (2011)18 reported that some participants with IBS had a negative self-image due to excessive bloating. Lindfred et al (2012)17 also identified this negative self-image among participants with IBD who expressed wanting to boost self-confidence.

 

Economic burdens were also inconvenient and placed stress on participants who either did not have health insurance or had travel costs associated with going to appointments. Wolfe and Sirois (2008)13 reported that participants with IBD had trouble getting insurance because some were not able to work part or full time. In addition, Canavan et al (2014)16 identified that paying out of pocket for over-the-counter medication was a stressor experienced by participants with IBS. Similarly, cost of medication was troublesome for participants with IBD, as identified in a study by McCormick et al (2012).17

 

LIMITATIONS

Participants in this study were all white, university-educated women. Although this may contribute to the homogeneity of the sample and commonality of experiences among the participants, it may not reflect the experiences of individuals of different genders, racial backgrounds, or education experiences. Replication of this study by recruiting individuals with dissimilar backgrounds (eg, male) would be beneficial.

 

CONCLUSION

Inflammatory bowel disease and IBS can significantly affect the lives of those living with these chronic conditions. Findings from this study demonstrated the existence of negative and positive effects of living with IBD/IBS. Healthcare professionals should be aware of these effects to create a good rapport with individuals through improved understanding of the various aspects of life that may be influenced by IBD/IBS. Focus should be placed on the means by which healthcare professionals can help individuals manage or remediate the negative effects and emphasize or introduce the positive effects.

 

Nurses and other healthcare professionals can aid in optimizing quality of life for those with IBD/IBS. For example, community nurses can play a key role in optimizing quality of life for patients with IBS by providing them with education, psychological and physical support, and assistance with self-care strategies and make referrals to other management resources.32 Maintaining a strong patient-nurse relationship33 and providing continuity of care to patients32 are also important aspects of disease management. Inflammatory bowel disease specialist nurses also play a key role in IBD management by providing patient education, managing telephone helplines and rapid access and follow-up clinics, assisting with transition from pediatric to adult services, and organizing funding for biological therapies and managing medications.34 Examples of management strategies and how healthcare professionals can help have been previously identified by Author, Skrastins and Fletcher (2016).23 Increasing awareness of the effects of IBD/IBS, as highlighted in this study and in past or future studies, can help disseminate knowledge about these effects to healthcare professionals and other individuals living with IBD/IBS to best optimize quality of life. One participant, Brooke, seemed hopeful for the future by stating that she hoped "people will realize that [[horizontal ellipsis]] a chronic disease doesn't have to affect your life to the point where you can't do something."

 

References

 

1. Canadian Digestive Health Foundation. Statistics. http://www.cdhf.ca/en/statistics. Accessed February 2014. [Context Link]

 

2. Crohn's and Colitis Foundation of Canada. The impact of inflammatory bowel disease in Canada. http://www.isupportibd.ca/pdf/ccfc-ibd-impact-report-2012.pdf. Accessed February 2014. [Context Link]

 

3. Loftus EV Jr. Clinical epidemiology of inflammatory bowel disease: incidence, prevalence, and environmental influences. Gastroenterology. 2004;126(6):1504-1517. [Context Link]

 

4. International Foundation for Functional Gastrointestinal Disorders. Facts about IBS. http://www.aboutibs.org/facts-about-ibs.html. Accessed April 2017. [Context Link]

 

5. Penaccione R. Mechanisms of inflammatory bowel disease. Gastroenterol Hepatol. 2013;9(8):529-532. [Context Link]

 

6. Graef JI. Irritable bowel syndrome in women. Exploring diagnoses & treatment options. Assoc Womens Health Obstet Neonat Nurs Lifeline. 2003;7(4):324-330. [Context Link]

 

7. Dancey CP, Backhouse S. Towards a better understanding of patients with irritable bowel syndrome. J Adv Nurs. 1993;18:1443-1450. [Context Link]

 

8. Hauser G, Pletikosic S, Tkalcic M. Cognitive behavioral approach to understanding irritable bowel syndrome. World J Gastroenterol. 2014;20(22):6744-6758. [Context Link]

 

9. Agostini A, Moretti M, Calabrese C, et al. Attachment and quality of life in patients with inflammatory bowel disease. Int J Colorectal Dis. 2014;29:1291-1296. [Context Link]

 

10. Gralnek IN, Hays RD, Kilbourne A, Naliboff B, Mayer EA. The impact of irritable bowel syndrome on health-related quality of life. Gastroenterology. 2000;119:654-660. [Context Link]

 

11. Ronnevig M, Vandvik PO, Bergbom I. Patients' experiences of living with irritable bowel syndrome. J Adv Nurs. 2009;65(8):1676-1685. [Context Link]

 

12. Huppertz-Hauss G, Hoivik ML, Langholz E, et al. Health-related quality of life in inflammatory bowel disease in a European-wide population-based cohort 10 years after diagnosis. Inflamm Bowel Dis. 2015;21(2):337-344. [Context Link]

 

13. Wolfe BJ, Sirois FM. Beyond quality of life measures: the subjective experiences of living with inflammatory bowel disease. Qual Life Res. 2008;17(6):877-886. [Context Link]

 

14. Lindfred H, Saalman R, Nilsson S, Sparud-Lundin C, Lepp M. Self-reported health, self-management, and the impact of living with inflammatory bowel disease during adolescence. J Pediatr Nurs. 2012;27:256-264. [Context Link]

 

15. Schneider MA, Fletcher PC. 'I feel as if my IBS is keeping me hostage!' Exploring the negative impact of irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) upon university-aged women. Int J Nurs Pract. 2008;13:135-148. [Context Link]

 

16. Canavan C, West J, Card T. Review article: the economic impact of irritable bowel syndrome. Aliment Pharmacol Ther. 2014;40(9):1023-1034. [Context Link]

 

17. McCormick JB, Hammer RR, Farrell RM, et al. Experiences with patients with chronic gastrointestinal conditions: in their own words. Health Qual Life Outcomes. 2012;10:25. [Context Link]

 

18. Farndale R, Roberts L. Long-term impact of irritable bowel syndrome: a qualitative study. Prim Health Care Res Dev. 2011;12(1):52-67. [Context Link]

 

19. Lonnfors S, Vermeire S, Greco M, Hommes D, Bell C, Avedano L. IBD and health-related quality of life-discovering the true impact. J Crohns Colitis. 2014;8(10):1281-1286. [Context Link]

 

20. Kemp K, Griffiths J, Lovell K. Understanding the health and social care needs of people living with IBD: a meta-synthesis of the evidence. World J Gastroenterol. 2012;18(43):6240-6249. [Context Link]

 

21. Magalhes J, Dias de Castro F, Carvalho PB, Leite S, Moreira MJ, Cotter J. Quality of life in patients with inflammatory bowel disease: importance of clinical, demographic and psychosocial factors. Arq Gastroenterol. 2014;51(3):192-197. [Context Link]

 

22. Fletcher PC, Schneider MA. Is there any food I can eat? Living with inflammatory bowel disease and/or irritable bowel syndrome. Clinical Nurse Specialist. 2006;20(5):241-247. [Context Link]

 

23. Skrastins O, Fletcher PC. "One Flare at a Time:" Adaptive and maladaptive behaviors of women coping with inflammatory bowel disease and irritable bowel syndrome. Clinical Nurse Specialist. 2016;30(5):E1-E11. doi:10.1097/NUR.0000000000000229 [Context Link]

 

24. Moutaskas C. Heuristic Research: Design, Methodology and Applications. Newbury Park, CA: Sage Publications; 1990. [Context Link]

 

25. Koerber A, McMichael L. Qualitative sampling methods. A primer for technical communicators. J Business Tech Comm. 2008;22(4):454-473. [Context Link]

 

26. Creswell JW. Qualitative Inquiry and Research Design: Choosing Among Five Approaches. Thousand Oaks, CA: Sage Publications; 2013. [Context Link]

 

27. DiCicco B, Crabtree BF. The qualitative research interview. Med Educ. 2013;40:314-321. [Context Link]

 

28. Trotter RT. Qualitative research sample design and sample size: resolving and unresolved issues and inferential imperatives. Prev Med. 2012;55:398-400. [Context Link]

 

29. Breitmayer BJ, Ayres L, Knafl KA. Triangulation in qualitative research: evaluation of completeness and confirmation purposes. J Nurs Sch. 1993;25(3):237-243. [Context Link]

 

30. Stanbury RM, Graham EM. Systemic corticosteroid therapy-side effects and their management. Br J Ophthalmol. 1998;82(6):704-708. [Context Link]

 

31. McCombie AM, Mulder RT, Gearry RB. How IBD patients cope with IBD: a systematic review. J Crohns Colitis. 2013;7(2):89-106. [Context Link]

 

32. Mason I. Supporting community patients with irritable bowel syndrome. J Commun Nurs. 2014;28(1):28-33. [Context Link]

 

33. British Society of Gastroenterology. IBS functional symptoms. http://www.bsg.org.uk/clinical/commissioning-report/ibs/functional-symptoms.html. Accessed December 2016. [Context Link]

 

34. Glatter J, Sephton M, Garrick V. The revised inflammatory bowel disease (IBD) standards and the IBD nurse role. Gastroint Nurs. 2013;11(10):28-35. [Context Link]