When you read the following article your view might depend on your knowledge of statistical methods, false positives, false negatives, and the fact that there are too many mediators and moderators (variables) that could also explain why certain people do not respond or “get better” with certain Crohn’s Disease Medications such as Humira or Remicade.
Getting better is not all or none. This news article that summarizes the journal results fails to mention that any symptom improvement at all in a patient with Crohn’s Disease most likely will IMPROVE Quality of Life.
“Remission” clinically is not the patient telling the doctor that they feel better. Instead remission involves colonoscopy, CT or MRI, blood tests etc. However, it is common and very possible that a person can feel “better or worse” than the test results indicate.
Due to all the potential variables we do not know about I find it a potential dangerous slippery slope for Doctors or Drug companies to deny trying a treatment like Remicade or Humira based on a genetic study. We do not know all the genes involved and even if we do – Genetics always explain about only 50%, the rest is environment, and other social and demographic factors that are UNIQUE to each person.
Crohn’s Disease affects all three layers of the intestine and current tests only look at the outer (on an x-ray, CT, or MRI), or inner (colonoscopy). The middle layer – which could be causing disease symptoms and disability is not being looked at.
Also, the small intestines often cannot be directly looked at on the inside layer even due to narrowing the colonoscopy must stop.
Trust yourself and find a good doctor you trust and work together as a team to find an individualized plan that will work.
Research looks at how events can be predicted in groups – it is unable to predict how an individual will react. Take a look at all the possible side effects or helpful effects of any medication and each individual person will have variability in what happens to them to one degree or another. For example, some people might feel nausea, others might feel fatigue, and another person might feel great!
This is my personal opinion and general scientific information. It is not intended to and cannot replace any advice or recommendations by your healthcare providers. You as a patient should follow medical advice and work with your doctor to make sure your healthcare needs are being met.
The Mediterranean Diet can change your life, help you feel healthier, prevent disease, help you lose weight and keep the weight off, improve your quality of life, and possibly live longer too. What we eat affects how we feel and also impacts our health. This is so important in wellness and with chronic illness. What we do everyday is important as well. Taking the time to make food at home is difficulty with the modern workplace requirements. However, I have decided to work on improving my quality of life by looking at my diet.
The Mediterranean Diet has been studied the past 50 years and the benefits are undeniable. I will post a few of the links and book names for research and recipes. I did research on the Mediterranean Diet back in 2010 through 2013 when I published a Medical Brochure on the Prevention of Alzheimer’s Disease through lifestyle changes. A major part of the research emerging at the time was that the Mediterranean Diet is probably related to prevention of Alzheimer’s Disease. Well now the facts are in years later and the Mediterranean Diet helps with many health conditions including Crohn’s Disease.
Keep in mind, this is not a diet in the sense that you are doing this to lose weight. You will possibly or even likely be healthier. However, the Mediterranean Diet is a lifestyle change that includes increased physical activity and changing what you eat and your thought process about food.
About one week ago I starting thinking about my reasearch on the Meditteranean Diet and decided to start eating that way to see how I feel. I discussed it and did some updated reading and began the diet. I will tell you that I believe I am noticing some improvement. However, do not use this blog for medical advice, go ahead and speak to your physician about your diet and food intake.
Research on the Mediterranean Diet has provided evidence for:
A new study published in April – see below – Mediterranean Diet Improves Quality of Life and may reduce disease activity.
Preventing Cancer and inhibiting tumor growth
Perhaps living longer
Preventing heart attacks and strokes
Improved concentration and thinking
Prevention of Alzheimer’s Disease and Parkinson’s Disease and possible reduction of symptoms
Lowered risk of dying from heart disease and cancer
I am learning to listen to my body. Stress is something all human beings and other animals experience, it turns out it is a physical response also known as the stress response or fight or flight. Basically, our bodies go into survival mode and that leads to a worsening of pain and even your emotional state. When I find I am stressed and restless I actually go turn on music I enjoy, close my eyes and get into bed to rest. After listening to music for a bit I find myself feeling more positive and often I fall asleep. Studies have shown that self-selected music (music you enjoy) and classical music fight the stress response. It really does work! So I am working on bringing music back into my life! There is something about listening to an old fashioned album or CD that I find relaxing versus the radio (no commercials). I am not into the new tech of digital or online music because I find I enjoy listening to an album the way the musician wrote – to each their own!
2) Positive thinking fights stress:
In light of successfully making it out of the hospital once again I told myself “good job Isaac”. In fact I do tend to review my experiences and try to find a meaning and growth point from going through suffering. Being that I am still recovering and unsure what the future holds with Crohn’s my best response is to keep my review to a minimum and to try to live mostly in the present moment. So instead of reviewing all the what scenarios (what happened and what will happen) here in my blog post I will discuss how I am currently managing my stress with positive thinking.
I have found that it is helpful to not allow myself to invest much energy into the pity party. “Oh, why me”, “I can’t handle this”, or “this isn’t fair”, or my favorite go to “I wish I never had Crohn’s Disease”. These thoughts are natural but not helpful.
Instead I tell myself “glad that is over”, “good job”, “I will be okay”, and “now that is another type of pain I can handle” – this builds confidence in my ability to handle my chronic illness. This change in thoughts to being more positive is well researched and call “cognitive reframing”. Essentially, I think of our thought process as an investment. Am I going to invest my limited resources in negativity, pain, and anger; or will I choose to invest in positive affirmation and giving myself credit for making it through another hospital stay. I have tried both investments of course and still do and I imagine you can guess which one actually helps! Try and be positive and be kind to yourself and say “good job”, that is what I strive to do 🙂 – Isaac Levinsky
Thanks for joining me! I look forward to all who take this journey with me and learn more about Crohn’s Disease, chronic illness, hope and inspiration, and my story!
Good company in a journey makes the way seem shorter. — Izaak Walton
My thought for today: Crohn’s Disease is not very well known. When I have told people I have a chronic illness that means something. Almost everyone has someone close to them who has suffered the difficulties and suffering associated with a chronic illness.
Typically people think well he must have diabetes or back pain or maybe arthritis. When I follow-up with saying, “I have Crohn’s Disease” that often does not mean anything because the general public often does not have any idea what the symptoms of the disease are and what it is like to live with them. Generally, I explain Crohn’s Disease like this: I have an auto-immune disorder, where my body’s own immune system is attacking myself, in my case my digestive system. This leads to pain, inflammation, surgeries in my case, the need for powerful and dangerous medications, and generally I feel like I have a bad case of the flu everyday in terms of symptoms.
When people want to know more about Crohn’s Disease or how I feel, they will ask or body language will indicate genuine care and concern. It is not up to every person who has a chronic condition to explain it to everyone they meet. Save your explanation when you feel like doing it. So when asked about it I will try and understand is this person interested or not? If a person is interested I find this to be a great opportunity to provide education and personal insight into my health condition and usually this leads to a conversation about a health problem that the other person or family member is going through!
It turns out that the human condition often leads to suffering of some kind and therefore; I have found support and reduced the isolation that chronic illness causes by starting to share my story. It has not been easy for me as I tend to be stoic and keep my health problems to myself, but I find there is a great benefit to others and myself in sharing when appropriate!
I look forward to all who take this journey with me and learn more about Crohn’s Disease, chronic illness, hope and inspiration, and my story!
Crohn’s Disease and Ulcerative Colitis are known as Inflammatory Bowel Disease. These diseases are chronic, lifelong conditions that lead to being in chronic pain, change in bowel habits such as diarrhea, and constipation, bleeding, and nausea. Also, inflammation of the digestive tract in active disease leads often to surgery and the need for medications. The problem with all the treatments available is that none truly address the emotional and quality of life aspects of living with these disease.
Please take this quiz here to see how your Crohn’s Disease is doing and you can discuss with your healthcare provider:
Do you feel tired? Are you in pain? When you have Crohn’s Disease like I do these two symptoms are difficult to manage and ever present. Today was worse than other days, I felt so tired it was difficult to do anything today.
It turns out that Crohn’s Disease and Colitis cause unearned and unpredictable fatigue.
What this means is that you can be tired for no reason at all, completely unrelated to your amount of sleep or level of physical exercise you have engaged
in. Second, the fatigue is impossible to predict when it will knock you down.
I view the best friend of fatigue to be pain as it turns out they are very closely related. As one worsens so does the other.
I am currently working on a self-help book called: Help for Fatigue and Pain: A program designed to treat Chronic Ilness related pain, fatigue, and depression.
There are moments when I hurt so much in my abdomen and sitting down due to inflammation that it is hard to focus onanything at all but the physical pain. This can be an isolating condition. I imagine whomever built that castle/estate in the photo above decided they wanted to be isolated on all sides! Well it turns out that isolation or resting does not improve pain. In fact today when I felt the least amount of pain was when I was the busiest.
If you experience chronic pain and fatigue I want you to try something out for one week. Simply write down from 1-10 with 10 being the worst and one being the least, how much pain and how much fatigue you had each day. Then I want
you to write down what you were doing when you felt your best and worst!
My final thought for the evening: Being in pain from Crohn’s or Colits builds character. Next time your mind tells you can not accomplish a goal such as making a meal or going to a store or work, remember: “I have been in this situation before and I am still here, I am okay, and I can handle it.” So go about your business and remind yourself you
can keep on going.