When you think of “remission”, what does that mean to you?
I know what I thought the first time my son’s doctor told us that he is in “clinical remission”. I thought he was better. That all was good. Life was going to be normal again. That is my perception of what remission is supposed to be like. Hah! It is amazing how when we start out on this journey – on the unknown path of chronic illness – that sometimes we can be so naive.
After receiving that first piece of hopeful news, that he was in clinical remission, he spent the next few years in and out of the hospital. Changes in medication. Missed tons of school. Lost weight. Threw up all the time. Had no appetite. Despite the ups and downs of his flaring, I kept hearing the word “remission” over and over again. Well, as you can imagine, that word began to get on my nerves. Clinical remission? Really? Then why is he in the hospital four times a year? Why is he still sick all the time? Why is he still losing weight and can’t eat? How did we end up in this place where you are suggesting surgery? If this is remission, I just don’t understand. The words began to have zero meaning for me. I didn’t even want to hear it anymore. I simply didn’t believe in those words.
Let’s take a step back and see how remission is defined.
diminution or abatement of the symptoms of a disease; the period during which such diminution occurs.
Dorland’s Medical Dictionary for Health Consumers. © 2007 by Saunders, an imprint of Elsevier, Inc. All rights reserved.
Well there you go. Any lessening of the symptoms of a disease is remission. So I should have known better.
But wait! Let’s look at another one.
the partial or complete disappearance of the clinical and subjective characteristics of a chronic or malignant disease. Remission may be spontaneous or the result of therapy. In some cases remission is permanent, and the disease is cured. Compare cure.
Mosby’s Medical Dictionary, 8th edition. © 2009, Elsevier.
There’s the words I was looking for – “complete disappearance”. So my perception really is not too far off base. In my conversations with the doctors, who was right and who was wrong? I’m going for neither at the moment. Chalking it up as a big miscommunication.
MY DEFINITION OF REMISSION
I’m now seven years into this journey called Crohn’s disease. Have my thoughts changed about what remission really means to me? Yes and no. I’ve come to the understanding that it can be defined differently by different people. When I hear the doctors say the word, I don’t get angry anymore. I know what they are trying to say now. But I also believe my thoughts on what remission means have changed.
These last three years, my son’s treatments have been working. He is probably healthier than he has ever been his entire life. He is able to participate in life in ways he couldn’t before. And as a parent I can’t tell you how insanely happy it is to see your child not suffering anymore. I feel comfortable now saying that my child is in remission.
With him doing so well, I now consider what remission looks like for him. Years ago my thoughts about it were the complete absence of disease. He would be all better. Now I know the reality of his remission. He is doing amazingly well. Yet, are all aspects of his Crohn’s gone? No. He still has remnants of the disease that bother him and that he has to deal with on a daily basis. But his life is better. I now realize and have come to terms with the idea that remission means “mostly better”. It means that Crohn’s is something that will never, ever go away. It will always be there. It must always be maintained. Medicines must always be taken. The foods that bother him must be avoided. And in an effort to stay in remission, we must never forget where we’ve been.
IBD patients are all different and all have different experiences. Remission may be completely different for other people. This is just my own experience that I wish to share with you.