Making our own decisions about our health

What is IBD and what do you do?

IBD stands for Inflammatory Bowel Disease, such as Crohn's and Ulcerative Colitis. IBD is a chronic inflammatory condition of the gastrointestinal tract. It is characterized by periods of inflammation (flares) and periods of remission. IBD is caused by the body's immune system attacking the digestive tract, leading to inflammation, tissue damage, and a range of symptoms. Common symptoms of IBD include abdominal pain and cramping, diarrhea, rectal bleeding, weight loss, and fatigue. It has no cure, but medication allows patients to stay in remission with fewer symptoms. Medication on its own does not treat the disease, there must be a holistic approach to control factors that can lead to a flare-up, such as diet, lifestyle, and stress management which is a major contributor to chronic inflammation.
I have been managing Crohn's disease for over 15 years of ups and downs experience. I had many flare-ups, and I was hospitalized for a long time for many reasons and common complications. I had to find a holistic treatment plan that considered not just taking medication, but customizing a personal diet, applying relaxation techniques, exercising, and improving sleeping habits to feel well physically. To stay balanced while living with the disease, I had to consider my mental, emotional, spiritual, and social health. Achieving that balance took years of struggle and trial and error experiences. As an IBD Support coach, I guide patients to achieve their goals of optimal health using a holistic approach that considers all aspects of health to be the best they can be while coping with the disease. At the heart of healing lies a transformative shift in mindset. Accepting and learning to live alongside IBD, rather than letting it define our lives, is an essential step towards reclaiming our health and well-being. By embracing a holistic approach and fostering resilience, I empower patients to thrive amidst challenges and live life to the fullest. Besides, I educate, raise awareness, and advocate for IBD.

Welcome to Mayo Connect. We are a community of patients and caregivers sharing our journeys and experiences.

Much of what we do here on Connect is coaching one another to take control of our own health and health care. It is often a hard sell to convince someone who is in pain and feeling miserable that there are many components to health, and there is no magical pill or cure for most of our illnesses and diseases.

I am curious about your role as an IBD coach - are you certified through any of the nationally recognized health and wellness coaching programs? Can you tell us more about what led you down this path in life?
Sue

Where are you located?

Thanks for the welcome message.
I agree with you that for someone with chronic pain, such as that associated with IBD, it is hard to believe that there is no magical pill or cure for the invisible disease. It took me years of experience after diagnosis to come to that conclusion. During the journey, I learned the path to come to terms with an incurable disease. That is why I am the best at understanding a patient's mindset and accepting the disease to be able to cope with its symptoms.
Your question about being certified by an organization reaffirms what I was talking about. You are still asking for a certificate, ignoring living the real experience and being able to guide others going through similar circumstances. What led me to that path is exactly what patients in this post started complaining about. Being on their own without anyone to empathize and guide them, especially those that we trust our lives with. The lack of awareness and care led me to put my knowledge and experience at the service of those who mostly need it "patients".

Almost every health problem, it seems, responds well to what are probably the pillars of sensible lifestyle: Eat well, Be physically active, which often results into good sleep, especially with simple stress management. This is what Cleveland's site has to say under "Prevention.": https://my.clevelandclinic.org/health/diseases/15587-inflammatory-bowel-disease-overview#prevention

In fact my nuisance erupting into anal inflammation/blood completely disappeared after I retired and was able to have even more control on what and how I eat and my physical exertion levels. For a dozen years now, I've not had any issue at my old age of 80. Much health, it seems, needs plain healthy lifestyle. Good luck folks!

The only doctor I trust now is my functional medicine doc, who diagnosed my gluten intolerance. He spent an hour with me the first couple visits, and now he answers all my question via email and responds the same day. Most doctors spend 10 minutes with you, take your vital signs and call it an "exam," and barely look up from their computers. If I'd relied on one of them, I'd still be in excruciating pain, and probably would've had multiple tests and be taking multiple drugs, when all I needed to do was change my diet (drastically, but still...) I never would've found a functional medicine doctor if I hadn't done my own research, so yeah, that's what we have to do. You have to advocate for yourself.

There have been a number of articles lately about what I call the medical industrial complex...it's effects on doctors and related healthcare professionals. Check out the Washington post, new York times, etc. many of these providers are leaving their professions due to work demands that don't really provide time to make a connection and get to know the individual they are treating. Imagine big medical "nonprofits" who ask their docs to use algorithms. We can and must do our own research and advocate for ourselves vigorously. More later

Finding a qualified quality functional medicine physician seems like the way to go but they don't accept insurance
I understand this but only the wealthy can afford this.

https://time.com/6281957/american-health-care-is-broken-major-hospitals-solution/