A Day In The Life Of A Person With IBD

A Fictional Account Of What A Challenging Day With IBD Might Be Like

Exhausted Woman
Getting out of bed and carrying on the business of the day can be a real challenge for people with IBD. Image © Alex and Laila / Stone / 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. It is a compilation of my own experiences and those of the many people with inflammatory bowel disease (IBD) that I've met and talked with over the years.

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. My hope is that this will be an educational read for people who do not have IBD: friends, relatives, even physicians. I touch on a few major points that many people have expressed to me over the years, but there are still a great number of topics and situations that I do not discuss in this article.

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

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

As I lie there, willing myself to muster the energy to get out of bed, I make a mental note to myself that I need to change my sheets tonight when I get home. One of the problems keeping me awake last night was the night sweats. I awoke several times in a cold sweat. I usually sleep on a towel, so when I wake up in a sweat, I can just remove the towel and am then able to 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 I forgot about my little towel trick entirely. Maybe I was just hoping that this night would be different.

I hit my snooze button again.

I was exhausted when I came home from work last night.

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

But sleep takes time, even through the exhaustion, because I'm up and down to the bathroom over and over. I try to delay it. I lie there, wishing it would end, just wanting to go to sleep. I want to stay in my bed where it's warm and comfortable. Every time I do go to the bathroom, I'm freezing and shivering. It's always the same: more diarrhea. I wonder how I can possibly go to the bathroom so many times when I haven't eaten much during the day. My hands are dry and sore from washing them after every bathroom visit. My bottom is also sore, and I must remember to buy more wet wipes when I'm at the store. If I used toilet paper, my 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 I don't think it's from my colon. I vaguely think that it's from a hemorrhoid, which isn't surprising, given constant diarrhea and the wiping that follows. At least I certainly hope that it's only a hemorrhoid or two.

I would use a topical hemorrhoid cream, but I would just wipe it away every time I go to the bathroom. Better to wait to use it at a time when I'm not going to the bathroom as much.

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

Sometimes I even have dreams about bathrooms. I'm sure people who don't have IBD have these dreams, too, but they're especially annoying to me. They're almost like nightmares, in which I'm unable to find a bathroom when I need one. Sometimes I also have dreams about my teeth falling out or being so ill I can't move. I can't escape the IBD even in my dreams. I vaguely think about the Restroom Access Act that has been passed in some states (although not mine), and that I've read about on social media and blogs. If it were passed in my state, would it make a difference in my life? I think about becoming more involved in IBD advocacy when I'm feeling better.

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

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

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

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

This time, however, I should probably call. I have seen some blood in the toilet, and although I'm reasonably sure it is from a hemorrhoid, my doctor will still probably want to do a rectal exam to make sure. I 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 I'm taking.

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

Thankfully I have a job where I can go to the bathroom when I need to. Sometimes, if I'm in a meeting, I'll fake a coughing or sneezing fit in order to duck out the door and use the bathroom. I'm sure no one really cares very much, but I'd rather them not know the real reason I 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. I know I'm probably hypersensitive to it, but more than once my food choices at work functions have come into question. Why do I order the plainest dish on the menu, and drink only water or perhaps some ginger ale? I usually shrug it off, saying that I'm just not adventurous, I only eat foods that I can identify, or that I'm watching my weight. I know my colleagues do not mean to be insensitive; they have no idea that I live with illness, and that eating new foods in an unfamiliar restaurant can spell disaster for me.

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

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

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

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

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