Ulcerative Colitis: Being Open with Your Family Can Help You Cope

It was a relief when I was finally diagnosed with colitis, having lived without knowing what my problem was for so many years. Unfortunately, my family has to deal with my constant stomach pains. It is very embarrassing having to "go to the bathroom" all the time, especially after eating just about anything I put into my mouth. Because my two sons have watched me go through my pain for so many years, they are a little more attentive when I "get sick."

Just last week, my husband and I decided to go out to dinner. We ran into some friends, and decided to eat with them. Dinner was nice, and we had just finished our meal, when I started getting my pain. I excused myself to go to the lady's room, when my girlfriend offered to go with me. I was really hoping she wouldn't, because I knew what I had to "do" when I got in there! It seems easier when there are strangers in the bathroom than when it is someone you know. It is so embarrassing! You never really get over that feeling of "shame" when you have to do more than pee in a public bathroom. I am an adult, I shouldn't feel like this, but you can never really control your feelings can you? I made it through the situation, and we chose to ignore that she had to wait for me for a few minutes.

My husband and I were ready to continue our night out alone, and go to the movies. When we got into the car, I had to ask him to take me home instead. There was absolutely no way I was going to be able to sit through a whole movie, and I wasn't about to pay nine dollars to spend most of it in a public bathroom. We ended up renting a movie, and having to continually pause it so I could take "bathroom breaks." I know this is hard for him, but he understands that what I have is an actual disease, and it isn't all in my head. I am lucky that he isn't too picky about spending a lot of time at home, and he is prepared for schedule changes based on my disease. He knows that if it is an important function, I will be very careful of what I eat before we go, so we don't have to leave suddenly. We all scan the place, wherever it is, and know where the bathroom is "just in case."

It can be a little more difficult when it comes to my children dealing with my problem. I am constantly discussing with them the issue that I have, and that I am not trying to be difficult, and I am controlling it the best way that I can. On bad days, I get really exhausted and I have to tell them that I cannot take them to a friend's house or their friends can't come over to ours. At first, it wasn't a happy time, but they have watched me curl up and cry with pain and spend time crying in the bathroom, and now they realize that I am not "faking it." Being open with them about my problem instead of trivializing it seemed to be the best thing that I did. In today's world, there are so many people with so many health problems that telling my kids I have one seems to be a non-issue.

They know too many people in their family circle that have cancer, diabetes, heart trouble, etc. that mom having colitis is just an addition to the list! I am sure that in their world, "moms" are invincible, but I am constantly telling them that I am a regular person too, and that they have to remember a time when they had the flu really bad, and try dealing with that everyday. That usually gets their attention. Now, when we are out, they will help me with food decisions. If I take them to a fast-food restaurant, they will say "Mom, do you think you can eat that right now? Where else do we have to go after this?" It's really helpful. I will get something if I know we are going home, and if we aren't , my kids might forgo eating there and help make a decision on where we can go that won't hurt me. When it comes to their sports, we already have a schedule on hand, and we have been lucky so far with not having to miss any events. Pre-planning is really the key. Unfortunately, we only have one bathroom in the house, so you will hear "Mom! Are you o.k. right now?! I have to go to the bathroom!" They are so helpful now, it has seemed to become just another thing in our lives. There are many worse diseases out there, and we are just grateful that this is the only one we have to deal with.

Being open and honest with my family seems to be the best thing that I did when it came to my having colitis. When it comes to family get-togethers, outings, or parties in general, I know that I have a support system and that I really don't have to feel ashamed. The biggest thing that had to change in our lives is what I eat. I really have to be attentive of what I put into my mouth before I go somewhere. I spend most of my time at home doing "trial-and-errors." Figuring out what I can eat that won't really bother me and letting my family know, helps when it comes time to spend a lot of time out of the house. Just like anything that changes in life, you can adapt and live with it. It just becomes a part of daily living. Making sure I have medication on hand is essential to leaving the house. Pre-planning isn't so bad, once you get into the habit of it. Instead of hiding and being embarrassed all the time, I have accepted my disease and am blessed that my family has accepted it too and have been very involved with helping me deal with it.