The Emotional Aspect of Crohn's

I was diagnosed with Crohn’s Disease in 2008 at the age of forty-five. It took two years and a specialist in IBD to finally find the right medication to treat the disease. That medication turned out to be the biologic, Remicade. Today I live a reasonably normal life.

I think a difficult part of dealing with IBD is the emotional aspect of the disease. Sure, the physical aspects are overwhelming. I’ve dealt with a fistula and erythema nodosum. I’ve had a DVT (deep vein thrombosis) and anemia. Then there’s the side effects of one medication after another, the infections and night sweats, the bathroom visits, and the general symptoms associated with Crohn’s.

But the emotional aspects seem to stay with me, even though I’m now in remission.

So what exactly are the emotional aspects of the disease? Fear. Alienation. Guilt. Depression. Anger. I might be missing a few, but those are the big ones. And I can’t seem to get beyond them. Don’t get me wrong, I don’t experience all these every day. But during the bad days, (yes, even though I’m in remission, I still have bad days) they all rush back. I try not to let my emotions ruin the good days, but I can never really have peace of mind knowing the future is uncertain and one day maybe I’ll wake up and Remicade will no longer work for me.

One other thing I want to share is how IBD is often perceived. So many times I’ve been told, well, at least it isn’t cancer. How does one respond to that? No, it isn’t cancer, but it isn’t a hang nail either, and life is hard. Yes, it could be harder, but that could be said for everyone. Yet, I do feel a connection with those suffering with cancer. In fact, having Crohn’s has helped me understand the suffering of people with all kinds of chronic illness.

Just recently I made the difficult decision to have a port-a-cath placed to receive my infusions. After seven years of infusions every eight weeks, my veins are shot. And another emotional aspect of the disease reared its ugly head — Anxiety. Every time I would go for my treatment, I was filled with anxiety that first, they wouldn’t find a vein, and second, it would take 3 or 4 stabs to start the IV. It took two nurses and three doctors to finally convince me to get a port.

And that’s where I am now on this journey called living with Crohn’s Disease.

At first, I resisted the port. I saw it as a sign of sickness. After all, people with cancer have ports. (See the psychology there. Even I believed I wasn’t really sick.) But now I see the port as a sign of wellness. My new port-a-cath will provide a pain free way to receive the drug that is keeping me well. So after months of deliberation, I finally went through with the placement.

I had my first infusion with my new port and there was absolutely no pain! It’s making the journey easier, and I’m all for that.

What advice can I offer those suffering with the emotional aspects of IBD? Well, I would say be good to yourself.

Don’t feel guilty if you can’t make that party. Don’t feel alienated. There are people who do understand. Try to connect with people online. You can learn a lot from people who have walked the journey before you. And try to take one day at a time—don’t think too much about what might happen tomorrow because today there is enough to deal with.