- Email: [email protected]
From uninformed patient to CWOCN: My life with ulcerative colitis and the ileoanal reservoir
THE VIEW FROM HERE From Uninformed Patient to CWOCN: My Life With Ulcerative Colitis and the Ileoanal Reservoir Suzi Biehl Follett, RN, BSN, CGRN, CWOCN
M
Suzi Biehl Follett is a CWOCN at PinnacleHealth Home Care in Harrisburg, PA. Reprint requests: Suzi Biehl Follett, RN, BSN, CGRN, CWOCN, PinnacleHealth Home Care, 7201 Audubon Drive, Harrisburg, PA 17111; e-mail: [email protected]. com J WOCN 2003;30:4-6. Copyright © 2003 by the Wound, Ostomy and Continence Nurses Society. 1071-5754/2003/ $30.00 + 0 doi:10.1067/mjw.2003.3
4
y history of ulcerative colitis began in 1973, when, at age 20, I suddenly developed painless rectal bleeding. I was not educated in the nursing field at that time. I called my gynecologist, who told me to “go see a surgeon, you probably have hemorrhoids.” So I went to a local university hospital and had an appointment at the outpatient surgery clinic. The surgeon performed a rigid proctosigmoidoscopy, then had me wait while he called for another physician to come to the room and repeat the exam. The second physician was a gastroenterologist. After completing the study, the doctors asked me if I had been traveling to third world countries lately. I assured them that I had not. They told me that I had left-sided ulcerative colitis, which they treated this with steroid enemas and a short course of oral prednisone. I improved, but was sick again within a few months, this time with urgent diarrhea and cramping in addition to the bleeding. I went through remissions and exacerbations frequently over the next eight years. I also endured two pregnancies, during which the disease was more quiescent for the first pregnancy, but worse during and after the second pregnancy. Memories of sitting on the toilet bleeding, nursing my newborn, while my two year-old daughter ran through the house unsupervised make me wonder how I ever survived this period of my life. The whites of my eyes turned bright red, and they ached. I saw an opthamologist, who said I had episcleritis, which is associated with ulcerative colitis. This information puzzled me. I thought, how in the world could bleeding ulcers in my colon affect my eyes? I obviously needed to learn more about this annoying disease. I borrowed nursing texts and basic health books in an attempt to learn more about ulcerative colitis. Most of the literature at the time indicated that the exact cause was unknown. Every article mentioned that stress exacerbates the disease, but does not actually cause the disease. Some unidentified factor causes the body to mount an attack on the lining of the large intestine. After ten years, ulcerative colitis really started to interfere with my activities. I sought the advice of a gastroenterologist who was young, kind, and relatively new to the field. That was in 1981, when I underwent
my first colonoscopy. This procedure revealed that I had pancolitis, and was really quite ill. More steroids, sulfasalazine, and steroid retention enemas quieted the symptoms, but as treatment tapered off, symptoms returned. At times, my colon biopsies showed so much inflammation that it was impossible to see if there were any dysplastic changes. At that point, however, the thought of any abdominal surgery terrified me, and I did not want to hear about surgical options; we stuck with medical management. The next ten-to-twelve years flew by. I went through the local community college’s associate’s degree nursing program, worked on an oncology floor of a local hospital, then was hired by a gastroenterology practice. At that office, there were plenty of bathrooms, and the staff understood if I had to make a mad dash to avoid fecal incontinence. Our practice had its own inflammatory bowel disease support group for two years, so I had plenty of people with whom I could identify. Ulcerative colitis made family and social outings challenging. Eating a meal always sent me to the bathroom for urgent, sometimes bloody, diarrhea. I would not dream of going to a restaurant with another couple in our car, because when I had to go, I had to be at a toilet within five minutes at the most. By this time, I was carrying an emergency kit in the car, including a bedpan, disposable containers to line it, tissues, towels, and a blanket or extra jacket to cover me if I had to defecate in the car. This became humiliating, even when my own family were the only people to witness this experience. By 1993, I was ready to throw in the towel and have a permanent ileostomy. I spoke to my gastroenterologist about this and told him that I felt that living with an ostomy would certainly be better than what I had been experiencing. He sympathized, but urged me to wait two or three years, because of new surgical techniques that were still being perfected that would allow me to still pass stool from the anus. I decided to wait. We tried azathioprine, to try to allow me to get off steroids. When the dose was increased from 50 mg to 75 mg daily, I became very ill, with fever, chills, severe bone pain, and diarrhea. I was treated in the emergency department, where it was suspected that
J WOCN Volume 30, Number 1
I may have pancreatitis, as a result of the azathioprine. I did not, but due to what seemed to be some sort of toxic reaction, the decision was made that I should not use this immunosuppressant. Also at this time, I developed erythema nodusum on my shins. These painful raised nodules paralleled my prolonged intestinal inflammation. In the fall of 1995, I started a period of intensive information gathering. By now, I was a Certified Gastroenterology Nurse, and attended Digestive Disease Week in Washington, D.C. I was concerned by studies presented there, which indicated that yearly surveillance colonoscopies frequently miss early colon cancer in ulcerative colitis because, although up to 100 biopsies are taken, they still only sample approximately one percent of the entire colon. In ulcerative colitis, each inflamed colonic cell is a potential future colon cancer. I had recently found out that a young man who had been my lab partner in a college chemistry class and who had ulcerative colitis, died at age 20 of very aggressive colon cancer. I promptly scheduled my appointment with my colorectal surgeon and asked many questions about the ileoanal reservoir procedure. He explained that he had performed 50 of these surgeries, and that recent improvements in surgical techniques provided patients with better anal sphincter control. I was emotionally ready for this surgery and scheduled it for March of 1996. About a month prior to the surgery date, I made an appointment to see the hospital’s enterostomal therapy nurse. I asked her to give me a pouch to wear, so I could become comfortable with it, and see if people could tell that I was wearing it. I filled it with water, and wore it to work for several days. By the end of that time I felt confident that I could cope with an ileostomy and that others would not be able to tell that I had it. The morning of my surgery, I was eager but frightened. I realized that my family was worried, but they tried to be upbeat and supportive. That surgery was the first step of two anticipated surgeries, which included the proctocolectomy, formation of the ileal pouch and anastamosing it to the anus, and formation of the temporary loop ileostomy. Because the surgeons were able to complete the procedure in less than three-and-a-half hours, I did not require a nasogastric tube. The first two postoperative days were quite painful, but my anesthesiologist was on top of the situation, adjusting doses of my epidural patient controlled analgesia pump as needed. I had a stapled midline abdominal incision from just below my sternum down to my pubic bone. By the fourth post-op day, I was walking to other patients’ rooms to visit, and was already feeling better than I had in years. My ileostomy was functioning, and ET nurse Bonnie Hornberger worked with me to change the pouch. I was discharged on post-op day six, and, over the
Follett 5
next three weeks, regained my strength and became more comfortable at dealing with a very active ileostomy. I saw Bonnie again two weeks later as an outpatient. Skin breakdown around my stoma was painful, and required use of mycostatin powder and changing to a convex pouching system. I felt so healthy, however, that my husband and I decided to go on a cruise to the Western Caribbean, departing a month after my surgery. I swam, I snorkeled, I ate wonderful food and felt fine after meals. Five weeks to the day after my surgery, my husband and I were climbing the famous Dunn’s River waterfall in Jamaica. I wore a swim suit and shorts and felt on top of the world. There was one episode in our room on the cruise ship that was upsetting. While preparing to empty my nearly full ileostomy bag into the toilet, the end of it slipped out of my hands, spilling liquid stool all over the bathroom. I cleaned up the mess with tears in my eyes, but came away from the experience realizing the importance of emptying the bag when it is half full. Despite that episode, I still felt that I had more freedom and bowel control than I had for twenty years. I returned to full-time work six weeks after my first surgery. Although I could have had the second surgery, the reversal of the ileostomy, in May, I chose to wait until the middle of June, after my younger daughter’s graduation festivities were finished. After undergoing a Gastrografin enema radiographic study to be certain there were no leaks in the J-pouch or the anastamosis, we scheduled surgery for mid-June. In an odd sort of way, I was rather reluctant to give up my ileostomy. I feared that I would not have the same bowel control with the completed surgery that I had with my ostomy. The surgery lasted only an hour, and reversed my ileostomy, leaving me with a three inch stapled abdominal incision. Some things about this recovery were more challenging. I vomited a few times after surgery and, on the fourth day, my incision became painful and inflamed, requiring the surgical resident to reopen it in my hospital room. I had a wound to pack, twice daily, until healed. Also frustrating was the frequency of the passage of stool. I had fairly good control, but I was going to the bathroom about twenty times a day. My surgeon had told me I could return to work in two weeks, but I assured him there was no way I could do this until we slowed down the stool frequency. He allowed me to start taking an antidiarrheal medication and a fiber agent after ten days. This helped reduce the stooling to about ten times daily. Perianal skin irritation was painful, and I developed a strong bond with skin barrier ointments, which were a huge help. I had only one episode of major leakage during sleep, but I wore a pad for about a year, until I felt I had better ability to sense when I had to defecate. I was able to return to work two weeks after
J WOCN January 2003
6 Follett
my second surgery, although my abdominal wound required packing until the end of August. I am now able to eat anything. I realize that broccoli will cause excessive gas, and that wine will cause perianal irritation, but I indulge occasionally anyway. With daily fiber and loperamide, I have about eight stools daily, but I never have to rush to the bathroom. I have had pouchitis a few times, but this resolved with a quinolone antibiotic. Removal of the colon does not remove the incidence of extraintestinal manifestations that are associated with inflammatory bowel disease. I have had a few episodes of an inflamed joint in my finger, which my internist felt was related to the immunologic factors of colitis. Episodes of episcleritis occur every few months, but resolve with prescription steroid eye-drops. I have had small kidney stones a few times in recent years, which is quite common in patients with long-term inflammatory bowel disease. I feel I can cope with these annoyances, and pray that I never develop the most life-threatening condition associated with ulcerative colitis, sclerosing cholangitis. This progressive bile duct disease usually requires a liver transplant. In the years following my surgery, both my colorectal surgeon and my gastroenterologist have asked me to speak to patients considering this surgery. I was happy to help others with their decision, realizing that they may not choose the path that I had. The surgeon told me about several patients who were reluctant to schedule the surgery, and by the time they did, they already had developed colorectal cancer. I found that I became annoyed when gastroenterologists persisted in doing whatever they could to save a patient’s colon. At what cost? I became almost militant in my belief that, since ulcerative colitis can be surgically “cured,” it should not be treated with potent immunosuppressants. I had met several patients who developed unusual cancers such as lymphoma, most likely from the medication that suppressed their body’s ability to fight off early cancers. Ulcerative colitis patients must be fully informed about both medical and surgical options for treatment, as well as about the complications that can occur from either choice.
Today, we know much more about ulcerative colitis than we knew when I was first diagnosed in 1973. Since the near completion of the Human Genome Project, several genes have been identified which predispose an individual to ulcerative colitis. Future genetic research may allow us to identify those at risk and to somehow prevent the onset of ulcerative colitis with the use of medications, dietary manipulation, or some other as-yetunknown method. A first-degree relative of my son-in-law was recently diagnosed with ulcerative colitis, and I am concerned that having the genetic markers on both my daughter’s DNA and her husband’s will increase the likelihood that future grandchildren may develop this condition. We are now much more aware and ready to address new cases appropriately. For the past four years I have worked in the home health care setting, for PinnacleHealth Home Care. While finishing my BSN, I had to do a rotation with a home health care agency and discovered that this type of nursing really appealed to me. I found that I still loved working with patients who had undergone surgery resulting in ostomies, due to inflammatory bowel disease or cancer. When an opportunity arose for one of our nurses to become a Wound, Ostomy and Continence Nurse (WOCN), I jumped at the chance. My agency sent me to Wicks Educational Associates, in Mechanicsburg, PA, where during four weeks of intensive classroom time, and four weeks of clinical experience with a preceptor, I learned a lot. A WOCN can improve the outcome of numerous diseases and conditions; however, persons with ulcerative colitis are unique, because they can benefit from all three aspects of this nursing specialty: wounds, ostomies, and continence. At times, I feel that destiny brought me from reluctant ulcerative colitis patient, through nursing school, a bachelor’s degree program, gastroenterology certification, and finally to wound, ostomy and continence nursing. I eagerly anticipate the challenges that lie ahead and will continue to assist ulcerative colitis patients undergoing surgery in their quest to become independent and healthy.
Correction In the November 2002 issue of the Journal, the article “Save Our Skin” (J WOCN 2002;29:276-7) should have included the following reference: Weeks S. Save our skin. Rehab Nurs 1996;21:267-268.
M
Suzi Biehl Follett is a CWOCN at PinnacleHealth Home Care in Harrisburg, PA. Reprint requests: Suzi Biehl Follett, RN, BSN, CGRN, CWOCN, PinnacleHealth Home Care, 7201 Audubon Drive, Harrisburg, PA 17111; e-mail: [email protected]. com J WOCN 2003;30:4-6. Copyright © 2003 by the Wound, Ostomy and Continence Nurses Society. 1071-5754/2003/ $30.00 + 0 doi:10.1067/mjw.2003.3
4
y history of ulcerative colitis began in 1973, when, at age 20, I suddenly developed painless rectal bleeding. I was not educated in the nursing field at that time. I called my gynecologist, who told me to “go see a surgeon, you probably have hemorrhoids.” So I went to a local university hospital and had an appointment at the outpatient surgery clinic. The surgeon performed a rigid proctosigmoidoscopy, then had me wait while he called for another physician to come to the room and repeat the exam. The second physician was a gastroenterologist. After completing the study, the doctors asked me if I had been traveling to third world countries lately. I assured them that I had not. They told me that I had left-sided ulcerative colitis, which they treated this with steroid enemas and a short course of oral prednisone. I improved, but was sick again within a few months, this time with urgent diarrhea and cramping in addition to the bleeding. I went through remissions and exacerbations frequently over the next eight years. I also endured two pregnancies, during which the disease was more quiescent for the first pregnancy, but worse during and after the second pregnancy. Memories of sitting on the toilet bleeding, nursing my newborn, while my two year-old daughter ran through the house unsupervised make me wonder how I ever survived this period of my life. The whites of my eyes turned bright red, and they ached. I saw an opthamologist, who said I had episcleritis, which is associated with ulcerative colitis. This information puzzled me. I thought, how in the world could bleeding ulcers in my colon affect my eyes? I obviously needed to learn more about this annoying disease. I borrowed nursing texts and basic health books in an attempt to learn more about ulcerative colitis. Most of the literature at the time indicated that the exact cause was unknown. Every article mentioned that stress exacerbates the disease, but does not actually cause the disease. Some unidentified factor causes the body to mount an attack on the lining of the large intestine. After ten years, ulcerative colitis really started to interfere with my activities. I sought the advice of a gastroenterologist who was young, kind, and relatively new to the field. That was in 1981, when I underwent
my first colonoscopy. This procedure revealed that I had pancolitis, and was really quite ill. More steroids, sulfasalazine, and steroid retention enemas quieted the symptoms, but as treatment tapered off, symptoms returned. At times, my colon biopsies showed so much inflammation that it was impossible to see if there were any dysplastic changes. At that point, however, the thought of any abdominal surgery terrified me, and I did not want to hear about surgical options; we stuck with medical management. The next ten-to-twelve years flew by. I went through the local community college’s associate’s degree nursing program, worked on an oncology floor of a local hospital, then was hired by a gastroenterology practice. At that office, there were plenty of bathrooms, and the staff understood if I had to make a mad dash to avoid fecal incontinence. Our practice had its own inflammatory bowel disease support group for two years, so I had plenty of people with whom I could identify. Ulcerative colitis made family and social outings challenging. Eating a meal always sent me to the bathroom for urgent, sometimes bloody, diarrhea. I would not dream of going to a restaurant with another couple in our car, because when I had to go, I had to be at a toilet within five minutes at the most. By this time, I was carrying an emergency kit in the car, including a bedpan, disposable containers to line it, tissues, towels, and a blanket or extra jacket to cover me if I had to defecate in the car. This became humiliating, even when my own family were the only people to witness this experience. By 1993, I was ready to throw in the towel and have a permanent ileostomy. I spoke to my gastroenterologist about this and told him that I felt that living with an ostomy would certainly be better than what I had been experiencing. He sympathized, but urged me to wait two or three years, because of new surgical techniques that were still being perfected that would allow me to still pass stool from the anus. I decided to wait. We tried azathioprine, to try to allow me to get off steroids. When the dose was increased from 50 mg to 75 mg daily, I became very ill, with fever, chills, severe bone pain, and diarrhea. I was treated in the emergency department, where it was suspected that
J WOCN Volume 30, Number 1
I may have pancreatitis, as a result of the azathioprine. I did not, but due to what seemed to be some sort of toxic reaction, the decision was made that I should not use this immunosuppressant. Also at this time, I developed erythema nodusum on my shins. These painful raised nodules paralleled my prolonged intestinal inflammation. In the fall of 1995, I started a period of intensive information gathering. By now, I was a Certified Gastroenterology Nurse, and attended Digestive Disease Week in Washington, D.C. I was concerned by studies presented there, which indicated that yearly surveillance colonoscopies frequently miss early colon cancer in ulcerative colitis because, although up to 100 biopsies are taken, they still only sample approximately one percent of the entire colon. In ulcerative colitis, each inflamed colonic cell is a potential future colon cancer. I had recently found out that a young man who had been my lab partner in a college chemistry class and who had ulcerative colitis, died at age 20 of very aggressive colon cancer. I promptly scheduled my appointment with my colorectal surgeon and asked many questions about the ileoanal reservoir procedure. He explained that he had performed 50 of these surgeries, and that recent improvements in surgical techniques provided patients with better anal sphincter control. I was emotionally ready for this surgery and scheduled it for March of 1996. About a month prior to the surgery date, I made an appointment to see the hospital’s enterostomal therapy nurse. I asked her to give me a pouch to wear, so I could become comfortable with it, and see if people could tell that I was wearing it. I filled it with water, and wore it to work for several days. By the end of that time I felt confident that I could cope with an ileostomy and that others would not be able to tell that I had it. The morning of my surgery, I was eager but frightened. I realized that my family was worried, but they tried to be upbeat and supportive. That surgery was the first step of two anticipated surgeries, which included the proctocolectomy, formation of the ileal pouch and anastamosing it to the anus, and formation of the temporary loop ileostomy. Because the surgeons were able to complete the procedure in less than three-and-a-half hours, I did not require a nasogastric tube. The first two postoperative days were quite painful, but my anesthesiologist was on top of the situation, adjusting doses of my epidural patient controlled analgesia pump as needed. I had a stapled midline abdominal incision from just below my sternum down to my pubic bone. By the fourth post-op day, I was walking to other patients’ rooms to visit, and was already feeling better than I had in years. My ileostomy was functioning, and ET nurse Bonnie Hornberger worked with me to change the pouch. I was discharged on post-op day six, and, over the
Follett 5
next three weeks, regained my strength and became more comfortable at dealing with a very active ileostomy. I saw Bonnie again two weeks later as an outpatient. Skin breakdown around my stoma was painful, and required use of mycostatin powder and changing to a convex pouching system. I felt so healthy, however, that my husband and I decided to go on a cruise to the Western Caribbean, departing a month after my surgery. I swam, I snorkeled, I ate wonderful food and felt fine after meals. Five weeks to the day after my surgery, my husband and I were climbing the famous Dunn’s River waterfall in Jamaica. I wore a swim suit and shorts and felt on top of the world. There was one episode in our room on the cruise ship that was upsetting. While preparing to empty my nearly full ileostomy bag into the toilet, the end of it slipped out of my hands, spilling liquid stool all over the bathroom. I cleaned up the mess with tears in my eyes, but came away from the experience realizing the importance of emptying the bag when it is half full. Despite that episode, I still felt that I had more freedom and bowel control than I had for twenty years. I returned to full-time work six weeks after my first surgery. Although I could have had the second surgery, the reversal of the ileostomy, in May, I chose to wait until the middle of June, after my younger daughter’s graduation festivities were finished. After undergoing a Gastrografin enema radiographic study to be certain there were no leaks in the J-pouch or the anastamosis, we scheduled surgery for mid-June. In an odd sort of way, I was rather reluctant to give up my ileostomy. I feared that I would not have the same bowel control with the completed surgery that I had with my ostomy. The surgery lasted only an hour, and reversed my ileostomy, leaving me with a three inch stapled abdominal incision. Some things about this recovery were more challenging. I vomited a few times after surgery and, on the fourth day, my incision became painful and inflamed, requiring the surgical resident to reopen it in my hospital room. I had a wound to pack, twice daily, until healed. Also frustrating was the frequency of the passage of stool. I had fairly good control, but I was going to the bathroom about twenty times a day. My surgeon had told me I could return to work in two weeks, but I assured him there was no way I could do this until we slowed down the stool frequency. He allowed me to start taking an antidiarrheal medication and a fiber agent after ten days. This helped reduce the stooling to about ten times daily. Perianal skin irritation was painful, and I developed a strong bond with skin barrier ointments, which were a huge help. I had only one episode of major leakage during sleep, but I wore a pad for about a year, until I felt I had better ability to sense when I had to defecate. I was able to return to work two weeks after
J WOCN January 2003
6 Follett
my second surgery, although my abdominal wound required packing until the end of August. I am now able to eat anything. I realize that broccoli will cause excessive gas, and that wine will cause perianal irritation, but I indulge occasionally anyway. With daily fiber and loperamide, I have about eight stools daily, but I never have to rush to the bathroom. I have had pouchitis a few times, but this resolved with a quinolone antibiotic. Removal of the colon does not remove the incidence of extraintestinal manifestations that are associated with inflammatory bowel disease. I have had a few episodes of an inflamed joint in my finger, which my internist felt was related to the immunologic factors of colitis. Episodes of episcleritis occur every few months, but resolve with prescription steroid eye-drops. I have had small kidney stones a few times in recent years, which is quite common in patients with long-term inflammatory bowel disease. I feel I can cope with these annoyances, and pray that I never develop the most life-threatening condition associated with ulcerative colitis, sclerosing cholangitis. This progressive bile duct disease usually requires a liver transplant. In the years following my surgery, both my colorectal surgeon and my gastroenterologist have asked me to speak to patients considering this surgery. I was happy to help others with their decision, realizing that they may not choose the path that I had. The surgeon told me about several patients who were reluctant to schedule the surgery, and by the time they did, they already had developed colorectal cancer. I found that I became annoyed when gastroenterologists persisted in doing whatever they could to save a patient’s colon. At what cost? I became almost militant in my belief that, since ulcerative colitis can be surgically “cured,” it should not be treated with potent immunosuppressants. I had met several patients who developed unusual cancers such as lymphoma, most likely from the medication that suppressed their body’s ability to fight off early cancers. Ulcerative colitis patients must be fully informed about both medical and surgical options for treatment, as well as about the complications that can occur from either choice.
Today, we know much more about ulcerative colitis than we knew when I was first diagnosed in 1973. Since the near completion of the Human Genome Project, several genes have been identified which predispose an individual to ulcerative colitis. Future genetic research may allow us to identify those at risk and to somehow prevent the onset of ulcerative colitis with the use of medications, dietary manipulation, or some other as-yetunknown method. A first-degree relative of my son-in-law was recently diagnosed with ulcerative colitis, and I am concerned that having the genetic markers on both my daughter’s DNA and her husband’s will increase the likelihood that future grandchildren may develop this condition. We are now much more aware and ready to address new cases appropriately. For the past four years I have worked in the home health care setting, for PinnacleHealth Home Care. While finishing my BSN, I had to do a rotation with a home health care agency and discovered that this type of nursing really appealed to me. I found that I still loved working with patients who had undergone surgery resulting in ostomies, due to inflammatory bowel disease or cancer. When an opportunity arose for one of our nurses to become a Wound, Ostomy and Continence Nurse (WOCN), I jumped at the chance. My agency sent me to Wicks Educational Associates, in Mechanicsburg, PA, where during four weeks of intensive classroom time, and four weeks of clinical experience with a preceptor, I learned a lot. A WOCN can improve the outcome of numerous diseases and conditions; however, persons with ulcerative colitis are unique, because they can benefit from all three aspects of this nursing specialty: wounds, ostomies, and continence. At times, I feel that destiny brought me from reluctant ulcerative colitis patient, through nursing school, a bachelor’s degree program, gastroenterology certification, and finally to wound, ostomy and continence nursing. I eagerly anticipate the challenges that lie ahead and will continue to assist ulcerative colitis patients undergoing surgery in their quest to become independent and healthy.
Correction In the November 2002 issue of the Journal, the article “Save Our Skin” (J WOCN 2002;29:276-7) should have included the following reference: Weeks S. Save our skin. Rehab Nurs 1996;21:267-268.