My Crohn’s Disease in Remission Doesn’t Mean I’m Not Suffering

Yes, remission of any illness is always a good, no, a great thing! When faced with an incurable or potentially terminal illness, to be told by your physician that the test results came back negative is a euphoric feeling no one can understand unless they’ve suffered and are now looking forward to a life free of disease, either long-term or short-term. Why short-term? Doesn’t remission last forever?

When there is no cure for an illness, there are usually medications, procedures, surgeries, etc. that can be used to treat the patient. If the patient’s body accepts the treatment well, that can be the recipe for remission. If the patient’s body rejects the treatment, remission is a bit further away. Regardless, treatment options for incurable diseases are just that, treatments. They are not cures. So, when the physician and patient find a solution that works, that is what they will use until it stops working. Our bodies have a way of growing intolerant to any treatment, so while it may work for a little while and provide remission, the patient can also relapse once the body starts becoming resistant to that treatment. This is why remission can be short-lived.

Regardless of how long we are in remission, that doesn’t mean we stop suffering. I can only speak to my experience, of course, as everyone is different, even those managing the same illness.

For me, I’ve been managing moderate-to-severe Crohn’s disease since age 12. I am now 44. For the first time in about 30 years, in early 2014, I received the wonderful news that my colonoscopy came back clean. Where to start?! What is this remission thing? How do I act How do I live?

I was on a mission to do as many things as possible, from going to the Superbowl (I’m a huge football fan) to picking up outdoor hobbies like kayaking, and I was able to kayak 100 miles down the Connecticut River in five days as a fundraiser for the Crohn’s and Colitis Foundation of America. While I was growing accustomed to eating without pain and not needing to find a restroom after every meal (or every five minutes, for that matter), I found, however, that I was still suffering. Determining the root of the suffering was easy — frustrating, but easy.

While I am happy to have medications that help me retain remission for short- or long-term, the side effects can sometimes be just as debilitating as the disease they are prescribed to help. For example, my current medication requires that I get blood work every three months to ensure my pancreas hasn’t been damaged. Blood work is also done to make sure white and red blood cell counts are level, since developing cancers such as skin cancer, lymphoma, etc. and blood disorders is also a possibility. And there are a host of other potential side effects.

Yes, I am lucky that my pancreas continues to work as it should, and I have not developed any cancers or blood disorders associated to the medication. However, my skin hurts. It just always hurts. I have developed a sensitivity to heat so that when heat (the sun, a hot shower, etc.) hits my skin, I experience a burning and itchy sensation that is difficult to manage. At the same time, I have developed small open sores all over my entire body that also just hurt. Applying some lotions stings, although I have found a couple that don’t sting as much. The sores will scab up if I’m lucky, but if my clothing or towels or bedsheets rub against one of the sores the wrong way, it will open up and start bleeding.

In addition to side effects from the medications, when you’ve had multiple surgeries like I have, you also build up scar tissue which can cause pain and discomfort. While you can get scar tissue scraped, every time this is done or you go in for another surgery, chances are high that your body will generate more scar tissue. It’s a vicious cycle.

So, while I love that my disease is in remission and that my support system is also ecstatic that I am in remission, I want my loved ones to understand that it is still a full-time job to manage the side effects of the medications designed to achieve remission… and that I’m not void of suffering.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.