“I identified eight of my patients who came to see me after struggling with a lack of diagnosis or proper management, and I asked them to provide a narrative of their experience. They discussed their lives, their symptoms, how they were treated, and the lessons they learned from their care that would help others.” This is, as authors Douglas A. Drossman, MD and Johannah Ruddy, MEd describe it, the foundation for their new book Gut Feelings: Disorders of Gut-Brain Interaction and the Patient-Doctor Relationship, which serves to educate readers on the relationship between the gut and brain, as well as offers techniques to maximize the patient-doctor relationship.
This book is written for patients and their doctors by an internationally acclaimed gastroenterologist and patient advocate. It contains up-to-date knowledge on the science, diagnosis, and treatment of all the Disorders of Gut-Brain Interaction (formerly called Functional GI Disorders). It will help patients to understand and manage your GI symptoms and improve the care you receive, while it helps doctors to learn the pathophysiology, diagnosis, and treatment of all Disorders of Gut-Brain Interaction and acquire communication skills to better connect with their patients.
The duo provided BookTrib with a behind the scenes look into the experience behind their book.
Q: For those who might not already know, can you please give us an overview of what Disorders of the Gut-Brain Interaction (DGBI) are?
A: The Disorders of Gut-Brain Interaction (DGBI) is a relatively new term that replaces “functional GI disorders” or “FGIDs.” This term includes diagnoses like irritable bowel syndrome, chronic constipation, functional dyspepsia, and nausea and vomiting syndromes. They relate to the dysregulation of nerve pathways between the brain (central nervous system) and the gut (enteric nervous system). Imaging studies like x-ray or endoscopy are normal because the problem does not relate to structural change but to nerve functioning. DGBI has replaced FGIDs because people often consider FGID to reflect a psychiatric disorder or one that is not genuine or legitimate.
The new term DGBI reflects the latest scientific understanding. It is “a group of disorders classified by gastrointestinal symptoms related to any combination of:
- Motility disturbance (abnormal movement inside the bowels)
- Visceral hypersensitivity (more intense abdominal pain than usual in response to stimuli)
- Altered mucosal and immune function (changes to the bowel’s mucous membrane and immune response, e.g., ‘leaky gut’)
- Altered gut microbiota (changes to the normal microbes found in a healthy gut, e.g., dysbiosis or imbalance of “good” and “bad” bacteria)
- Altered central nervous system (CNS) processing (changes in how the brain processes pain and other GI symptoms).”
Q: How is this book different from your first book, Gut Feelings: Disorders of the Gut-Brain Interaction and the Doctor-Patient Relationship?
A: The first book was highly successful for patients and providers because it discussed the nature of these disorders in an easy-to-read fashion and described how to diagnose and treat all 33 DGBIs. Then it provided Johannah Ruddy’s story of having post-infection IBS and how she struggled to navigate inadequate care and the stigma experienced within the health care system. Our patient-doctor relationship was therapeutic and helped her toward recovery. The rest of the book focused on teaching communication skills to improve the patient-provider relationship. Since then, Johannah has become a patient advocate. We have worked together at workshops, conferences, and in our writings to help others by teaching ways to improve the patient-provider relationship
The feedback from those who read the first book was very positive, and many felt that the story of Johannah’s illness and the lessons she learned were key features. Then, we decided to produce a second book that focuses on the illness journeys of other patients, because they may also offer important lessons. So I identified eight of my patients who came to see me after struggling with a lack of diagnosis or proper management, and I asked them to provide a narrative of their experience. They discussed their lives, their symptoms, how they were treated, and the lessons they learned from their care that would help others. The initial feedback on this book has been very positive. So we are building on the first book by sharing the knowledge gained from others who also navigated through these disorders, just like Johannah did.
Q: Johannah, as a patient yourself, your personal story is particularly compelling and devastating – how did you manage to keep going before you met Dr. Drossman? Did you ever give up hope that you would find healing?
A: To be honest, before meeting Dr. Drossman, I had resigned myself to the fact that I would never feel healthy again, and I would need to continue to adapt my left around my symptoms and my ill health. I had no hope that things would ever change for me and even wondered if the symptoms would ultimately lead to a shorter lifespan. I was under the assumption that my symptoms were either a medical mystery or simply not serious enough to matter to any medical provider, based on my experiences with the health care system. I kept going forward because I had to; I have two sons and a husband who need me and I wanted to be able to be with them, experience life with them and continue to make memories with them. Even if I was delayed or required extra time for rest, I would still make the most of my time with my family. Once I met Dr. Drossman and was given a diagnosis and medical management, I recognized that I did not have to resign myself to the past and there was hope for recovery and a more normal way of life again. This was not just exciting to consider for my physical well-being but also for my emotional well-being and provided a tremendous sense of hope.
Q: Dr. Drossman, how are you helping to change the way doctors treat patients who present with DGBIs? What is your biggest obstacle?
A: Doctors are in a dilemma. They don’t know how to connect with patients just as patients don’t know how to connect with their doctors. Most doctors are not adequately taught how to diagnose and treat DGBI. This lack of knowledge can lead them to ignore and belittle these disorders or even stigmatize the patients. The biggest obstacle to overcome is educating doctors to understand the scientific basis for DGBI, thereby making them real. Then we can teach them the skills to properly work with their patients. We accomplish this through improving their communication skills and optimizing the patient-provider relationship via patient-centered care.
Through my educational program DrossmanCare in collaboration with the Rome Foundation, an international academic organization that teaches DGBI, we have published numerous scientific articles and run workshops and seminars to implement this curriculum for providers in Gastroenterology, primary care, psychology and nutrition. We are also training providers to facilitate teaching programs just like Johannah and I are doing.
Q: What do you hope that people take away from reading this new book?
A: Let me list a few takeaways:
- To learn that DGBI are real disorders that have a scientific basis to explain these troubling symptoms.
- This knowledge about DGBI can help in early diagnosis and proper treatment
- Patients with DGBI have a role in their care which we call collaborative care.
- Collaborative care leads to clinical improvement with reduced symptoms and better quality of life
- As included in the book, patient narratives are potent methods to educate patients and providers about these disorders through collaborative care.
- Patients can learn tips and techniques that can help them communicate with their doctors and in their self-care.
- Very important that reading the patient narratives put human faces onto these disorders, creating an emotional and educative experience.
Purchase Gut Feelings: Disorders of Gut-Brain Interaction and the Patient-Doctor Relationship here and here.
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About Douglas A. Drossman MD and Johannah Ruddy M.Ed.:
Dr. Drossman is trained in gastroenterology and psychiatry and was the founder and co- director of the Center for Functional GI and Motility Disorders at the University of North Carolina. He is an internationally recognized scientist, clinician, and educator in DGBI and communication skills training. He has written over 500 peer- reviewed scientific articles, published 15 books, and was awarded numerous federal research grants. He is the founder, former president, and current CEO of the Rome Foundation. As president of DrossmanCare, he produces educational videos and develops workshops and training programs in communication skills. His internationally recognized gastroenterology practice receives patients with difficult to diagnose and manage DGBI.
Mrs. Ruddy is a patient and patient advocate with a background in education and a career in non-profit management. As Executive Director of the Rome Foundation, she coordinates operations and educational programs. With DrossmanCare, Ms. Ruddy facilitates workshops in patient-centered care and is a simulated patient in videos on communication skills. Ms. Ruddy can articulate her experiences in a way that educates doctors and motivates patients to self-actuate and assume responsibility in their care. In this regard, her social media presence is well recognized, and she has published four peer-reviewed articles in scientific journals on patient advocacy and the importance of the patient perspective in medical education.
