I've lived with an IBD diagnosis for ten years now, but probably have lived with Ulcerative Colitis for fifteen years or more. My UC symptoms have been well controlled now for at least six years. Of course, I have the occasional flare-up but I am now able to get it under control pretty quickly and easily. I am grateful that my husband is very accepting of me and the IBD and how it can adversely affect our lives when it rears its ugly little head.
But even with all of these positives and having learned how to live a good, productive life despite having IBD, frustration and fear can still creep into my mind and occasionally wreak havoc. And last night was one of these times. A friend of ours came for a four day visit and left to go home yesterday. We all had a great time together and today our house is oddly quiet without her. When we first met I lived in Washington, D.C., worked in a high stress, high powered job, and IBD was not an issue. I worked, I played, I ate, I drank, I lived and I never thought about my gut, poop, or where the nearest bathroom was. Today I work, but out of my home as a self-employed writer. I eat, of course, but I now have to pay attention to what I'm eating, how it's prepared, and often have to turn down eating things I know will cause my gut to retaliate. I no longer drink alcohol. And even thought I might not be having a gut issue I now scope out the nearest bathroom everywhere I go - I've gotten very good at this and can now find a bathroom anywhere within 60 seconds.
As is typical when you meet up with friends you've known for years we talked about old times, old jobs, and old friends. But it wasn't until last night after she'd gone home that I realized our reminiscing had affected me adversely as well as positively. I didn't actually realize it until I had ‘picked' a senseless argument with my husband over something very mundane and quite honestly, very stupid. During this tiff, he just stopped and asked me what was really upsetting me. And when I stopped I had to honestly tell him I really didn't know. Our argument ended and I just sat in a chair and tried to figure out what was really wrong. Why had I picked this fight? What was really bothering me? Finally, after half an hour or so of thinking and crying - I couldn't stop crying but I also couldn't tell my husband or myself why I was crying - I realized that I was sad about the life I'd left behind, mourning the loss of my B.C. life - before colitis - once again.
This mourning-the-loss-of-my-old-life tends to hit me about every two or three years but it still surprises me. And along with the mourning of the old life I also have to work through the fear that my husband just might be getting tired of the new me, a me that did not exist before we were married. My colitis really became an issue about one year after we were married. So, essentially, the woman my husband married no longer existed after that first year. Even though he is very supportive and reassuring and accepting, the fear that he just might get tired of the IBD and all the ways it has changed not only my life but his life too does creep in every few years as well.
Living with a chronic illness is not easy. The physical part is hard but the emotional part of it can almost be harder. And sometimes even I forget that I have to check in with my emotional side and see how I'm actually coping. When my physical symptoms are under control and I'm chugging through life well and happy I can forget that somewhere in the back of my mind I am slightly concerned about when the next IBD flare-up might hit. Will I be on vacation? Or, will it hit when I'm in the middle of a big project with a looming deadline?
If you've read my book, Living with IBD & IBS: A Personal Journey of Success (www.ibdandibs.com), then you know that I try very hard not live in my IBD but rather with IBD. I think there's a big distinction between the two. When I was first diagnosed with IBD and at my sickest I live in my disease, I became IBD, I let it take over my whole life and who I was. But then I learned to live with IBD - to function, to work, to play, to travel with the disease but not to let it take me over and to keep me from living and growing and being me.
At times, like last night, I have to remind myself that I'm not IBD and it doesn't have a hold on me and my life unless I allow it to. Yes, I am a slightly different person today than I was B.C. but in reality I am a stronger person today than I was ten, 15, even 20 years ago. Today I live a better quality of life because I truly try to appreciate every good day that I have when IBD isn't a commanding part of my life. And I do fight the fear and the difficulty of living with a chronic illness. But I am learning that talking about these feelings and these fears is an important part of successfully living with IBD. And, thankfully I have a very patient, loving, and understanding husband.
Published On: November 12, 2008