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!
I enjoyed white water rafting before I had Crohn’s Disease at age 19. Part of the fun was not knowing how much water would be released that day and how big or rough the rapids would be. The best part was that the rapids lasted only 30 minutes, then it was a smooth and calm ride down the river. Life with a chronic illness and my Crohn’s Disease is very much like taking a raft ride down a fast moving and ever winding river with white water rapids.
Each day, each moment I never know truly what to expect. I might wake up and think that today will be a good day and then 5 minutes later end up the bathroom for an hour with severe pain, bleeding, and diarrhea. The problem with this and any chronic illness being unpredictable is that it is harder to cope with and manage.
Knowing that the white water river rapids lasted only 30 minutes gave me a finish line, and end in sight – I knew I could endure it and that it would be over soon. With Crohn’s Disease, I never know what is around the next bend. River rapids are rated on a 1 to 5 scale, with 4 and 5 being very rocky, fast, and dangerous. I never know in my daily life if I am about to go around the bend and suddenly there is a waterfall with huge rocks, or if the current will slow a bit and provide me some reprieve from the onslaught.
Interestingly the way to manage both river rapids and Crohn’s Disease moments of crisis is the stay in the moment, not focus on the past or future and be present. This concept is called Mindfulness and essentially it involves paying attention to only what is going on at the moment without judging or evaluation it. I simply notice and comment in my mind what is going on. A key factor is that I pay kind attention. There is empathy and kindness when I observe any pain and suffering and I take deep breaths and focus on my breathing, noting I am okay and I can handle this!
In the future I plan to write more about the uses and benefits and my personal journey with mindfulness and relaxation.
I made this website because I have Crohn’s Disease and I want to help others with Crohn’s Disease or Colitis. My Crohn’s Disease started when I was 19 years old and has persisted in a moderate to severe classification meaning I am sick every day. I chose this photo of the ocean and the coastline because in life with Crohn’s there is always waves crashing on your shore. Be it a new medication, are up, pain, fatigue, or worse.
There are also calm moments when hopefully you can have a break from the illness and just be YOU. Do not overdo when you feel good, balance activities with rest is what I have learned!
I also have my doctorate in Clinical Psychology with over 10 years in healthcare experience working with individuals with chronic illnesses. My goal is to write about my journey with Crohn’s Disease in a book based on my own illness experiences and also what I have learned both personally and professionally.
As you follow these blog posts you will see that this site is a work in progress. The plan is to have more content added to improve the site give readers an understanding they are not alone.
I am currently in a flare up of symptoms meaning that I am having increased pain, illness, fatigue, inflammation due to Crohns Disease.
My thoughts, you have not suffered or been in pain for no reason, your life has a purpose, you will overcome, and be nice to yourself because remember….having any disease is not your fault!
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.