I Am Truly Grateful for What Crohn’s Disease Taught Me

By Thomas Robinson

I have had Crohn’s disease for 19 years. During those years, there were times when my symptoms were so awful I felt like I would be better off dead. But those times notwithstanding, I am truly grateful for all the things my illness taught me. Learning them has changed my life for the better in more ways than I can count.

I am also grateful that I was open enough to learn the lessons Crohn’s had to teach me. I hate to imagine what my life would be like if I hadn’t been.

While my illness has been a great teacher,
living with it has been one of the most
difficult ordeals I have ever faced.

My symptoms were painful and debilitating. They included: losing so much weight that I was almost literally skin and bones; loss of bowel control accidents; disabling muscle weakness; passing out while standing; acute fatigue; night sweats so profuse I had to change my bed sheets twice a night; and intense, unpredictable pain and swelling in my arms, legs, hands and feet that made it hard for me to do everyday things like walk or hold a pen.

I can truly say that the lessons I have learned outweigh all that I went through with those symptoms.

One of my lessons, which has made a very big difference in my life, is that good health is not something to be taken for granted. Having been horribly sick, I am grateful for every day I feel well. And even on the days that I don’t, I’m grateful for all the organs and parts of my body that are healthy and functioning just as they are supposed to.

Another lesson is that I am much stronger than I thought. Soon after my diagnosis, a commitment to myself came up from someplace inside me. It was to do (and keep doing) everything I possibly could to get my health back. And I did.

I have no doubt that without that
commitment, my Crohn’s disease would not
be in the five-year-long remission
that it’s in today.

The third lesson I have learned from my ordeal with Crohn’s disease is that some doctors are better than others. Actually, I knew that many years before my diagnosis. But it became very obvious when I went to different doctors for treatment. One who was especially poor was associated with a major university’s hospital, so I learned that credentials weren’t always a reliable way to determine which doctors are best.

As a result of that lesson, I took some steps to find the best doctor for me, and I made an important decision about my medical care.

The decision was that I would take charge of and responsibility for my medical care and for getting well.

That didn’t mean that I would be my own doctor. I continued to seek out the best doctors I could find. But I didn’t blindly, without asking any questions, follow my doctors’ orders. Instead, I joined and participated in several online support groups for people with Crohn’s disease, did as much reading and research as I possibly could, shared my concerns and questions with my doctor, and decided whether or not to try the treatments they recommended.

I want to make it clear that I’m not saying that you should do what I did. Many people don’t have the time or the inclination, or both, to be as proactive as I was. That’s a decision everyone needs to make for themselves.

When I became sick, I did a lot of thinking, and one conclusion I came to from doing that was that my body is kind of like my car, in that I need it to keep going. And in that vein, I realized that just like I—not my mechanic—was the one who was going to have to rely on my car after he finished doing the repairs it needed, I—and not my doctor—was the one who was going to live in and have to rely on my body after he or she finished with each treatment. So, I did my best to make sure those treatments were the ones my body needed.

You may be wondering how a doctor would react to an extremely proactive patient like me. The answer is that many did not like my attitude or want me as a patient. Of course, if they felt that way, then I definitely did not want them to be my doctor.

So, I had a hard time finding a gastroenterologist I felt like I could work with. But I figured there had to be one, so I wrote a letter in which I described both the kind of doctor I was looking for and the kind of doctor I didn’t want. Then I made 35 copies and sent them, along with self-addressed, stamped envelopes to all of the gastroenterologists within 25 miles of where I lived.

Of those 35, only 2 responded. I chose one of them and was very satisfied with him.

I also did a year-long detox program, with vitamin and mineral chelation and other treatments. Only when it was complete did I allow my doctor to administer Remicade, an immunosuppressant. And with my first treatment, my Crohn’s disease went into remission.

In the 15 years since, I have had a few relapses. One involved developing some fistulas. Having developed a severe allergy to Remicade, I could no longer tolerate it. What eventually helped me heal was going on a whey protein diet for a month, and making awareness meditation a daily practice. My last relapse was over five years ago, and I’ve been symptom free without drugs ever since.

My biggest lesson was learning what it is like to live with a serious chronic illness and the change it led to was leaving behind a 27-year career as a software engineer and becoming a turnaround coach for people with chronic illnesses and chronic pain.

That career shift (and the world wide web) has allowed me to help people all over the world be proactive and get excellent medical care, heal their illness related depression and anxiety, and then go on to make lives for themselves filled with fulfillment and love and connection with others. Doing that has been a privilege and I feel very blessed.

As a turnaround coach for people with chronic illnesses and chronic pain, and as someone who has done my share (or more) of struggling with difficult challenges, I have learned that most of us are way too hard on ourselves. When I have pointed that out to my clients, and told them how to be gentler, almost all of them have become less depressed and anxious, and have also become much happier, even if their symptoms don’t get better (and sometimes they do get better!).

When we’re struggling with a chronic illness, we don’t need self-criticism. What we need is lots of understanding and compassion.

So, I have my clients tell the person in the mirror how sorry they are that they are ill or in pain. And I have them give themselves compassionate, reassuring hugs several times a day.

One woman who read this suggestion in an article I wrote said, “I have to say that it was one of the best bits of advice I have ever read. I’ve just followed your advice and am feeling much better emotionally. I’m definitely going to be hugging myself and apologizing to myself several times a day if this is how good it makes me feel.”

I encourage you to do this exercise too. You will benefit from it—and very likely a lot.

Another exercise I give my clients is to have them focus on the organs and parts of their bodies that are affected or in pain. Then I have them let those organs and parts know how much they appreciate it that they are doing the best they can for them (my clients), and that they (my clients again) know that those organs are doing so in spite of being affected. Finally, I have my clients send those organs and body parts lots of compassion and empathy.

As you know, our bodies and organs are made up of living cells. And all living things respond to love (appreciation and compassion are forms of love). I can’t tell you how much your organs will heal when you do this exercise, but I know you will experience some healing. For some of my clients, their healing has been truly miraculous. I hope yours is too.

About the Author:
Thomas Robinson is the Turnaround Coach for people living with chronic illnesses and chronic pain. He helps them have much better lives by giving them the understanding and gentle support they need and deserve, but often don’t get from their doctor or therapist. You can find out more about him and get his free
report, Struggling with Chronic Illness or Chronic Pain? Learn 7 Ways to Turn Your Life Around, at his website:

2017-11-28T10:52:48-08:00Friday, July 3, 2015|Community Support Center, Patient Support, Story Sharing|