Summary: Personal Impact Of Crohn's Disease
Personal Impact of Crohn 's Disease
Stephanie M. Collins
NUR/ 427
June 8, 2014
Joan Taylor, BSN
Personal Impact of Crohn 's Disease
Crohn’s Disease (CD) is a chronic, intermittent inflammatory, autoimmune disease that can affect any part of the gastrointestinal (GI) tract from the mouth to the anus. CD is most commonly diagnosed in the small and large intestines. It is idiopathic in origin and is characterized by a variety of symptoms. Patients frequently present with severe abdominal pain, diarrhea and rectal bleeding. There is no one test available that can diagnose CD therefore it may take some time to obtain a correct diagnosis.
CD can have a devastating impact on those that are afflicted. Debilitating pain, nausea, incontinence …show more content…
and fatigue are just a few of the physical issues a patient might have to deal with on a daily basis. However, this disease causes much more than just physical pain. Shame, humiliation, anxiety and depression are feelings common to Crohn’s sufferers (Wynn, 2012). The financial burden of doctors’ appointments, medications and surgeries may also take its toll. Nurses must be able to be able to take a holistic and empathetic approach in providing care to patients with chronic diseases. In order to do so, a well-rounded understanding of how chronic diseases can affect all areas of a patient’s life must be reviewed. This article will follow patient impact statements regarding their struggles and triumphs with CD to gain insight on the day in a life with a chronic disease.
Personal & Social Effects of Crohn’s Disease
“Today I will fight again. This disease will not own me or define me.” These are the words that Crohn’s sufferer Debbi Wynn repeats to herself as she starts her day. Wynn is the manager of the communications department at CNN. Her private battle with Crohn’s began in 1980 when she was diagnosed. It is a battle that she has described as horrible, overwhelming and humiliating. Embarrassment is what causes most of CD patients to suffer in silence. The symptoms and treatments are not subject matter that anyone would feel comfortable having a discussion about. Pain that doubles her over strikes without warning, a sense of urgency with bowel movements, incontinence, intravenous feedings, life-threatening bowel obstructions, surgeries and stomas are always a constant threat. Then there is the mental anguish caused by isolation, depression and fatigue (Wynn, 2012).
Accepting a dinner invitation, a lunch meeting at work or a night out with friends is something that most people take for granted.
Wynne, however does not. Each move she makes around food must be carefully planned. Restaurants and menus are carefully chosen around the short list of foods Wynn can easily digest. Even when she does plan there is no guarantee that her symptoms won’t act up. There is always the anxiety provoking thought in the back of her head, “what if." She goes on to say that most people would only have to look at her restrictive diet and become depressed. Not Wynn though. She will stick to her restrictive diet any day over the times she is forced to maintain a clear liquid diet due to a Crohn’s flare-up. The days she is able to eat solid foods and not receive nourishment through tubes are days she cherishes. Most days, Wynn will simply turn down an invitation out so she can stay in the comfort of her house. Her medications, medical supplies and bathroom are all within reach there, and she doesn’t have to worry about a “what if” scenario (Wynne, …show more content…
2012).
Financial Impact of Crohn’s Disease
Inflammatory bowel disease not only taxes the body and mind, it brings with it a heavy financial burden. Frequent doctor’s visits, hospitalizations, multiple medications, treatments and surgeries all put a huge dent in one’s bank account (Keefler, Doerfler, & Artz, 2012). Debbi Wynn has had nine surgeries over the years for Crohn’s related issues. Her surgeries for fistula repair, bowel obstruction and to remove damaged colon have been costly. There are also days when she is in too much pain or suffering from bouts of diarrhea so severe, she must go to the hospital because of dehydration. All of this means she must take sick time from work. When the sick days run out, she goes unpaid. In addition, Wynn takes thirteen doses of six different medications every day and must have four Vitamin B12 shots a month. Even though, she is insured the copays still add up (Wynne, 2012).
A study that compared continuously insured adults and children with and without Crohn’s disease showed that the average healthy patient spent $2,898 a year on health costs where the patient with CD spent $10,952 a year (Kappelman, Rifas–Shiman, Porter, Ollendorf, Sandler, Galanko & Finkelstein, 2008). This study only took into account patients that had health insurance. The costs to those without insurance must be astronomical.
Educational Experience & Change Motivators
Being correctly diagnosed with CD is almost never a straight and narrow road. Since there is not a single test that can diagnose CD, a patient must go through a series of exams to rule out other diseases and syndromes before being diagnosed.
Meghan Telpner was backpacking through Africa in 2003 when she began to experience digestive distress. Her symptoms eventually became so severe that she had to return home. Telpner made an appointment with her doctor. This was just the beginning of her hellish journey to a diagnosis. She then was passed from doctor to doctor, each of them telling her something different. Telpner was diagnosed with everything from stress, Irritable Bowel Syndrome and depression. Tired of the medical field not taking her seriously, she began to do her own research. She came across Inflammatory Bowel Disease in a book she was reading and knew that this is what she had. Telpner states that it still took seeing six more doctors to get a diagnosis. In 2007, she was finally diagnosed with Ulcerative Colitis, which was later re-diagnosed as CD (Telpner, 2014).
The doctors involved in her care were not very helpful in providing education on her condition. The doctor gave her a “laundry list” of medications to take then told her, “You’re young, have fun. Eat your cheeseburgers and your milkshakes. There isn’t much you can do.” He then told her she needed to come back in a few months to discuss surgery (Telpner, 2014).
Terrified of the lifetime of medications and surgeries that lay before her, Meghan took her health into her own hands. The lack of education provided to her coupled with the few treatment options given motivated Telpner to adopt new health behaviors. She quit her job, moved in with her parents and made researching CD her full-time job.
Against the advice of all of her doctors, she decided to take a holistic approach to healing. Acupuncture became a daily part of her life for three months. She took nutrition classes, only ate seasonal organic foods she prepared herself, started a yoga regimen, kept sleep and food diaries and read every book she could get her hands on about nutrition and IBD. Although she describes having bad days on her road to recovery, Megan has been symptom free for over two and a half years. She currently teaches nutrition classes and skills to others afflicted with chronic disease so that they might lead the best life possible (Telpner, 2014).
Theory of Motivation
The Health Belief Model could be appropriately applied to Cronh’s patients as a method to assess willingness and readiness to change. This model states that a person is not likely to actively participate making healthy changes unless they (1) believe they are susceptible to the condition (2) believe that the conditions could seriously affect their lives (3) believe that the benefits of taking action outweigh the barriers to taking action (4) are confident that they could be self-sufficient in carrying out the health behaviors needed to benefit them (Klug Redman, 2007).
Crohn’s patients like Meghan Telpner are usually well aware of how the disease can affect their lives by the time they are diagnosed. Coming to the realization that there is no cure, and they will battle this disease the rest of their lives is another hurdle. To be successful in putting CD into remission; the patient must show dedication to adhere to the strict medication regimen, diet, and the onslaught of doctor’s visits ahead.
Theory of Learning
Although advances in medicine have been able to prevent a CD flare-up for approximately two years, recurrence is inevitable. This is why it is crucial for patients to adapt health behaviors that enhance the effectiveness of their treatment. The Project Management Program for Crohn’s Disease (PMPCD) is based on the Social Cognitive Learning Theory (SCLT) (Keefler, Doerfler, & Artz, 2012).
SCLT postulates that learning is a cognitive process that takes place in a social setting. People learn behaviors through observing others (Klug Redman, 2007). The PMPCD is an outpatient program that involves six weekly sixty-minute meetings. The first meeting targets therapy goals that need to be addressed during treatment. Therapy is further tailored from this point to suit the individual needs of the patient which may include smoking cessation, weight loss, medication adherence, enhancing communication between patient and doctor, financial concerns, as well as parenting and personal relationships. All patients receive training on relaxation techniques and are referred to an advanced practice dietician. PMPCD has shown promise to keep patients in remission and improve their overall health (Keefler, Doerfler, & Artz, 2012).
Conclusion
CD is not only a medical condition.
Its tentacles branch out in to every aspect of a patient’s life. Nurses must not only treat the physical symptoms of this terrible disease, they must provide the appropriate psychosocial support for the patient as well. This holistic approach to healing not only applies to patients with CD, it can be applied to help patients with chronic illness across the board.
References
Keefler, L., Doerfler, B., & Artz, C. (2012, February). Optimizing Management of Crohn’s Disease within a Project Management Framework: Results of a pilot study. National Institute of Health Public Access Author Manuscript, 18(2), 254-260.
Kappelman, M. D., Rifas–Shiman, S. L., Porter , C. Q., Ollendorf, D. A., Sandler, R. S., Galanko, J. A., & Finkelstein, J. A. (2008). Direct healthcare costs of crohn 's disease and ulcerative colitis in us children and adults. Gastroenterology, 135(6), 1907-1913. Retrieved from http://www.gastrojournal.org/article/S0016-5085(08)01675-2/pdf
Klug Redman, B. (2007). The practice of patient education: A case study approach (10th ed.). St. Louis, Missouri: Mosby Elsevier.
Telpner, M. (2014). Meghan Telpner: Nutritiionista. Retrieved from http://www.meghantelpner.com/blog/my-story-how-i-got-here/
Wynn, D. (2012). CNN Health. Retrieved from
http://www.cnn.com/2012/08/07/health/crohns-personal-struggle/
Stephanie M. Collins
NUR/ 427
June 8, 2014
Joan Taylor, BSN
Personal Impact of Crohn 's Disease
Crohn’s Disease (CD) is a chronic, intermittent inflammatory, autoimmune disease that can affect any part of the gastrointestinal (GI) tract from the mouth to the anus. CD is most commonly diagnosed in the small and large intestines. It is idiopathic in origin and is characterized by a variety of symptoms. Patients frequently present with severe abdominal pain, diarrhea and rectal bleeding. There is no one test available that can diagnose CD therefore it may take some time to obtain a correct diagnosis.
CD can have a devastating impact on those that are afflicted. Debilitating pain, nausea, incontinence …show more content…
and fatigue are just a few of the physical issues a patient might have to deal with on a daily basis. However, this disease causes much more than just physical pain. Shame, humiliation, anxiety and depression are feelings common to Crohn’s sufferers (Wynn, 2012). The financial burden of doctors’ appointments, medications and surgeries may also take its toll. Nurses must be able to be able to take a holistic and empathetic approach in providing care to patients with chronic diseases. In order to do so, a well-rounded understanding of how chronic diseases can affect all areas of a patient’s life must be reviewed. This article will follow patient impact statements regarding their struggles and triumphs with CD to gain insight on the day in a life with a chronic disease.
Personal & Social Effects of Crohn’s Disease
“Today I will fight again. This disease will not own me or define me.” These are the words that Crohn’s sufferer Debbi Wynn repeats to herself as she starts her day. Wynn is the manager of the communications department at CNN. Her private battle with Crohn’s began in 1980 when she was diagnosed. It is a battle that she has described as horrible, overwhelming and humiliating. Embarrassment is what causes most of CD patients to suffer in silence. The symptoms and treatments are not subject matter that anyone would feel comfortable having a discussion about. Pain that doubles her over strikes without warning, a sense of urgency with bowel movements, incontinence, intravenous feedings, life-threatening bowel obstructions, surgeries and stomas are always a constant threat. Then there is the mental anguish caused by isolation, depression and fatigue (Wynn, 2012).
Accepting a dinner invitation, a lunch meeting at work or a night out with friends is something that most people take for granted.
Wynne, however does not. Each move she makes around food must be carefully planned. Restaurants and menus are carefully chosen around the short list of foods Wynn can easily digest. Even when she does plan there is no guarantee that her symptoms won’t act up. There is always the anxiety provoking thought in the back of her head, “what if." She goes on to say that most people would only have to look at her restrictive diet and become depressed. Not Wynn though. She will stick to her restrictive diet any day over the times she is forced to maintain a clear liquid diet due to a Crohn’s flare-up. The days she is able to eat solid foods and not receive nourishment through tubes are days she cherishes. Most days, Wynn will simply turn down an invitation out so she can stay in the comfort of her house. Her medications, medical supplies and bathroom are all within reach there, and she doesn’t have to worry about a “what if” scenario (Wynne, …show more content…
2012).
Financial Impact of Crohn’s Disease
Inflammatory bowel disease not only taxes the body and mind, it brings with it a heavy financial burden. Frequent doctor’s visits, hospitalizations, multiple medications, treatments and surgeries all put a huge dent in one’s bank account (Keefler, Doerfler, & Artz, 2012). Debbi Wynn has had nine surgeries over the years for Crohn’s related issues. Her surgeries for fistula repair, bowel obstruction and to remove damaged colon have been costly. There are also days when she is in too much pain or suffering from bouts of diarrhea so severe, she must go to the hospital because of dehydration. All of this means she must take sick time from work. When the sick days run out, she goes unpaid. In addition, Wynn takes thirteen doses of six different medications every day and must have four Vitamin B12 shots a month. Even though, she is insured the copays still add up (Wynne, 2012).
A study that compared continuously insured adults and children with and without Crohn’s disease showed that the average healthy patient spent $2,898 a year on health costs where the patient with CD spent $10,952 a year (Kappelman, Rifas–Shiman, Porter, Ollendorf, Sandler, Galanko & Finkelstein, 2008). This study only took into account patients that had health insurance. The costs to those without insurance must be astronomical.
Educational Experience & Change Motivators
Being correctly diagnosed with CD is almost never a straight and narrow road. Since there is not a single test that can diagnose CD, a patient must go through a series of exams to rule out other diseases and syndromes before being diagnosed.
Meghan Telpner was backpacking through Africa in 2003 when she began to experience digestive distress. Her symptoms eventually became so severe that she had to return home. Telpner made an appointment with her doctor. This was just the beginning of her hellish journey to a diagnosis. She then was passed from doctor to doctor, each of them telling her something different. Telpner was diagnosed with everything from stress, Irritable Bowel Syndrome and depression. Tired of the medical field not taking her seriously, she began to do her own research. She came across Inflammatory Bowel Disease in a book she was reading and knew that this is what she had. Telpner states that it still took seeing six more doctors to get a diagnosis. In 2007, she was finally diagnosed with Ulcerative Colitis, which was later re-diagnosed as CD (Telpner, 2014).
The doctors involved in her care were not very helpful in providing education on her condition. The doctor gave her a “laundry list” of medications to take then told her, “You’re young, have fun. Eat your cheeseburgers and your milkshakes. There isn’t much you can do.” He then told her she needed to come back in a few months to discuss surgery (Telpner, 2014).
Terrified of the lifetime of medications and surgeries that lay before her, Meghan took her health into her own hands. The lack of education provided to her coupled with the few treatment options given motivated Telpner to adopt new health behaviors. She quit her job, moved in with her parents and made researching CD her full-time job.
Against the advice of all of her doctors, she decided to take a holistic approach to healing. Acupuncture became a daily part of her life for three months. She took nutrition classes, only ate seasonal organic foods she prepared herself, started a yoga regimen, kept sleep and food diaries and read every book she could get her hands on about nutrition and IBD. Although she describes having bad days on her road to recovery, Megan has been symptom free for over two and a half years. She currently teaches nutrition classes and skills to others afflicted with chronic disease so that they might lead the best life possible (Telpner, 2014).
Theory of Motivation
The Health Belief Model could be appropriately applied to Cronh’s patients as a method to assess willingness and readiness to change. This model states that a person is not likely to actively participate making healthy changes unless they (1) believe they are susceptible to the condition (2) believe that the conditions could seriously affect their lives (3) believe that the benefits of taking action outweigh the barriers to taking action (4) are confident that they could be self-sufficient in carrying out the health behaviors needed to benefit them (Klug Redman, 2007).
Crohn’s patients like Meghan Telpner are usually well aware of how the disease can affect their lives by the time they are diagnosed. Coming to the realization that there is no cure, and they will battle this disease the rest of their lives is another hurdle. To be successful in putting CD into remission; the patient must show dedication to adhere to the strict medication regimen, diet, and the onslaught of doctor’s visits ahead.
Theory of Learning
Although advances in medicine have been able to prevent a CD flare-up for approximately two years, recurrence is inevitable. This is why it is crucial for patients to adapt health behaviors that enhance the effectiveness of their treatment. The Project Management Program for Crohn’s Disease (PMPCD) is based on the Social Cognitive Learning Theory (SCLT) (Keefler, Doerfler, & Artz, 2012).
SCLT postulates that learning is a cognitive process that takes place in a social setting. People learn behaviors through observing others (Klug Redman, 2007). The PMPCD is an outpatient program that involves six weekly sixty-minute meetings. The first meeting targets therapy goals that need to be addressed during treatment. Therapy is further tailored from this point to suit the individual needs of the patient which may include smoking cessation, weight loss, medication adherence, enhancing communication between patient and doctor, financial concerns, as well as parenting and personal relationships. All patients receive training on relaxation techniques and are referred to an advanced practice dietician. PMPCD has shown promise to keep patients in remission and improve their overall health (Keefler, Doerfler, & Artz, 2012).
Conclusion
CD is not only a medical condition.
Its tentacles branch out in to every aspect of a patient’s life. Nurses must not only treat the physical symptoms of this terrible disease, they must provide the appropriate psychosocial support for the patient as well. This holistic approach to healing not only applies to patients with CD, it can be applied to help patients with chronic illness across the board.
References
Keefler, L., Doerfler, B., & Artz, C. (2012, February). Optimizing Management of Crohn’s Disease within a Project Management Framework: Results of a pilot study. National Institute of Health Public Access Author Manuscript, 18(2), 254-260.
Kappelman, M. D., Rifas–Shiman, S. L., Porter , C. Q., Ollendorf, D. A., Sandler, R. S., Galanko, J. A., & Finkelstein, J. A. (2008). Direct healthcare costs of crohn 's disease and ulcerative colitis in us children and adults. Gastroenterology, 135(6), 1907-1913. Retrieved from http://www.gastrojournal.org/article/S0016-5085(08)01675-2/pdf
Klug Redman, B. (2007). The practice of patient education: A case study approach (10th ed.). St. Louis, Missouri: Mosby Elsevier.
Telpner, M. (2014). Meghan Telpner: Nutritiionista. Retrieved from http://www.meghantelpner.com/blog/my-story-how-i-got-here/
Wynn, D. (2012). CNN Health. Retrieved from
http://www.cnn.com/2012/08/07/health/crohns-personal-struggle/