A Day in the Life of a Person With IBD

Woman lying on bed, covering face with arm
Emmet Malmstrom / Getty Images

The following is a fictional account of what a day might be like for someone who has Crohn's disease or ulcerative colitis.

Everyone deals with IBD in their own way. In recent years, more and more people are blogging about their experiences and even founding new support groups, both online and in-person. Even so, the average person with mild-to-moderate IBD is most likely trying to get through the bad days without losing her job or winding up in the hospital. The hope is that this will be an educational read for people who do not have IBD: friends, relatives, even physicians.

This is an account of what might be considered a bad IBD day.

Morning

You wake up this morning not feeling at all rested because it's difficult for you to get a good night's sleep — there are too many things to keep you awake.

As you lie there, willing yourself to muster the energy to get out of bed, you make a mental note to yourself that you need to change your sheets tonight when you get home. One of the problems keeping you awake last night was the night sweats. You awoke several times in a cold sweat. You usually sleep on a towel, so when you wake up in a sweat, you can just remove the towel and then lie back down on the dry sheets below. But it's not comfortable sleeping on a towel — there's a reason sheets don't have a nap. Last night you forgot about your little towel trick entirely. Maybe you were just hoping that this night would be different.

You hit your snooze button again.

You were exhausted when you came home from work last night.

Sometimes you're so tired and feel sick and feverish as if you have the flu. You don't have the flu, but you make yourself some soup and climb into bed as soon as you're able to anyway. You don't get any chores accomplished, and you don't get to go out to dinner or drinks with friends. You're barely able to hold it together enough to eat your soup and find the remote so that you can at least watch TV while you're waiting for sleep to come.

But sleep takes time, even through the exhaustion, because you're up and down to the bathroom over and over. You try to delay it. You lie there, wishing it would end, just wanting to go to sleep. You want to stay in your bed where it's warm and comfortable. Every time you do go to the bathroom, you're freezing and shivering. It's always the same: more diarrhea. You wonder how you can possibly go to the bathroom so many times when you haven't eaten much during the day. Your hands are dry and sore from washing them after every bathroom visit. Your bottom is also sore, and you must remember to buy more wet wipes when you're at the store. If you used toilet paper, your bottom would be raw, making it almost impossible to sit.

There is some blood in the toilet and on the paper. It's only a small amount (this time), so you don't think it's from your colon. You vaguely think that it's from a hemorrhoid, which isn't surprising, given constant diarrhea and the wiping that follows. At least you certainly hope that it's only a hemorrhoid or two. You would use a topical hemorrhoid cream, but you would just wipe it away every time you go to the bathroom. Better to wait to use it at a time when you're not going to the bathroom as much.

You realize you must stop hitting your snooze and actually get out of bed. You need to get ready for work. At least you did not wake up with an urgent need to go to the bathroom. Many times you do wake up needing the toilet again. In fact, you're often up before your alarm, although you frequently crawl back into bed for a few minutes' rest until your alarm goes off.

Sometimes you even have dreams about bathrooms. You're sure people who don't have IBD have these dreams, too, but they're especially annoying to you. They're almost like nightmares, in which you're unable to find a bathroom when you need one.

Sometimes you also have dreams about your teeth falling out or being so ill you can't move. You can't escape the IBD even in your dreams. You vaguely think about the Restroom Access Act that has been passed in some states (although not yours), and that you've read about on social media and blogs. If it were passed in your state, would it make a difference in your life? You think about becoming more involved in IBD advocacy when you're feeling better.

A shower is heavenly, and you contemplate what to have for breakfast. You're not exactly hungry, because you're tired of thinking about your own digestive system, but you need to have something to eat in order to go about your day and to stop your stomach from growling. The safest choice seems to be toast and water. Maybe you'll put some jam or butter on your toast, or perhaps some peanut butter, which would give you a nice bit of fat and energy.

Other people are sometimes envious of your thin frame, but it comes at a great price. You're not enjoying yourself in the way a healthy person would. You don't have the confidence or the energy to wear the latest trends and go out to clubs. A lot of your money goes for medication and doctor visits. You worry that one day you'll have a significant expense, such as a trip to the emergency room or surgery, and so you try to be frugal. You earn money at your job, of course, but you also have a concern that your ability to advance your career and increase your earning potential is limited because of your health.

You don't take sick days very often. In fact, you probably take fewer sick days than people who are much healthier than you are. You live in fear of your employer finding out about your condition, and firing you because of the potential cost of your future medical care and what it would do to their insurance premiums. You are very sick, indeed, if you call into work or take some time to go to a doctor's appointment.

Doctor's appointments. You don't see your gastroenterologist often enough. You know you should have colonoscopies on a regular basis, but it's difficult to bring yourself to the doctor and then to the hospital or clinic for tests. If you're feeling OK, it just doesn't seem to be a priority. But when the symptoms come back, you do call and make a gastro appointment. You have resigned yourself to the reality of your disease: it comes and goes.

This time, however, you should probably call. You have seen some blood in the toilet, and although you're reasonably sure it is from a hemorrhoid, your doctor will still probably want to do a rectal exam to make sure. You should also bring up the fevers and diarrhea because perhaps it's time for a change in medication or an increase in the dosage of the medication you're taking.

Work

You drag yourself into work and put a smile on your face. You want to be a healthy, productive member of society with friends and a social life, but on days like today, it's very hard to do more than the bare minimum.

Thankfully You have a job where you can go to the bathroom when you need to. Sometimes, if you're in a meeting, you'll fake a coughing or sneezing fit in order to duck out the door and use the bathroom. You're sure no one really cares very much, but you'd rather them not know the real reason you suddenly need to leave. Some people are very good about providing "bio breaks" in their meeting schedule, but others seem to have bladders of steel and don't take into account that other people need to visit the toilet.

Today there are no meetings, and blissfully, no business lunch or dinner. You know you're probably hypersensitive to it, but more than once your food choices at work functions have come into question. Why do you order the plainest dish on the menu and drink only water or perhaps some ginger ale? You usually shrug it off, saying that you're just not adventurous, you only eat foods that you can identify, or that you're watching your weight. You know your colleagues do not mean to be insensitive; they have no idea that you live with illness and that eating new foods in an unfamiliar restaurant can spell disaster for you.

Evening

You finish out your day and leave to go home. You don't rush out at the dot of five o'clock, again because you don't want to appear as though you're just counting the hours before you can get home and relax in your bed. You recall the days of high school and college jobs where you punched a clock and could only go to the bathroom at breaks. Those were very difficult times filled with anxiety.

You worry that you worry too much. You should probably pay a visit to a mental health professional to talk about your anxiety, and how living with IBD has affected your personality and your thoughts. You remember how you were before diagnosis: you didn't think about where bathrooms were. The truth is, at this point, you can't even remember having a "normal" bowel movement. It must have been such an unimportant part of your life at one time. You never remember thinking about your digestive tract until it started to betray you. One day you'll work up the courage to ask your gastroenterologist for a referral to a mental health professional who has experience with people who have IBD. You know you put on too good a show for your doctor — you should probably let him see how scared and vulnerable you are. But you're used to putting on a brave face, and that's why he has no reason to think you're often anxious or worried.

As you climb back into bed with your soup (oh, gosh you need to change the sheets before you fall asleep), you do think about what you're grateful for. You have a job, you have a home. You can go on the internet anytime day or night and talk with your friends who have IBD. You have never met most of these people in person but only talk to them through forums and social media. Many of you are having the same types of problems, and though you're far-flung all over the world (although chiefly in Canada, the United States, the UK, and Australia), you can help each other with the difficulties that IBD brings. And sometimes, you just share the latest jokes, because, after all, nothing is funnier than a good poop joke.

You tell yourself that if you don't feel better tomorrow, you'll call your doctor. Three days like this means you definitely need some help in dealing with the symptoms. But you hope you'll feel better and that diarrhea will stop tonight. And maybe it will.