On multiple occasions I’ve had friends ask what it’s like to live with inflammatory bowel disease and I’m sure that if you’re reading this,that you have too. It’s a question that can be hard to answer. You want to give them an accurate view of what life is like, but at the same time you don’t want to come off as negative. So how can you accurately tell others what living with IBD is really like?
Reflecting on my journey with IBD recently, I thought it was very important to share what it’s like to live with Crohn’s disease or ulcerative colitis day after day. Many people don’t even understand that it’s a chronic disease, that those suffering from such conditions live with it every day, and that our bodies never get a break even if everything is going well.
Living with IBD is a constant battle and something we have to deal with on such a regular basis that other people should understand what it’s like. From upon waking up to the moment we go to sleep, here are some symptoms that patients with Crohn’s disease or ulcerative colitis deal with on a daily basis.
An IBD patient doesn’t just roll out of bed and start their day. For many of us, we wake up with a variety of symptoms on a regular basis. First off, if we do sleep, many days we wake up with an extremely achy body – even our joints need time to wake up. Even though it’s a gastrointestinal disease, we experience inflammatory responses in our entire body. If you’ve ever woken up with the flu, this is how our bodies feel but without the runny nose, headache, etc. Our bodies feel like they don’t want to move and it takes time for us to get moving.
Many patients also have to get up and go directly to the bathroom since a lot of time may have passed from our last trip. We can’t help this, it’s just something that has to happen. The transit time for food for a normal person is 24-48 hours, depending on how regular they are. For IBD patients, it is normally much less. Our dinner that we ate just 12 hours ago might be ready to exit the body as soon as we wake up. Other people need coffee to get this going, we don’t.
Getting our day started
Now that we are up and slowly moving around, we need to figure out what we can eat. Each day is different for someone with IBD, so we have to learn to listen to our bodies in the mornings. Some days, we might not be able to eat a normal breakfast; we have to figure something out that won’t hurt our stomach and ruin the rest of the day. To help us decide, we keep a list of safe foods for each and every meal.
Next comes our medicine. Too often, IBD patients have a medicine cabinet filled with different drugs that help our bodies in a variety of ways. There are cases where patients take upwards of 20 pills a morning just to be able to get out of the house. Some prescriptions are even given to us just to counteract the reactions to other medicines. Generally, Prednisone, Pentasa, Lialda, Entrocort, NAUSEA, and more have to be taken on a regular basis to get our bodies ready.
During the Day
Fatigue can hit in an instant. One minute our day can be flowing well, and BAM! Fatigue will come on out of nowhere. This can be crippling for us, and many people don’t understand how hard our bodies need to work when we run out of energy. To us it’s like the world stops. This isn’t feeling like we need a power nap – this is feeling like we need to sleep for 24 hours, as if we physically cannot continue even the most meager task. We want to do more, we want to go about our day, but our body sometimes says, “NO.”
Pain and nausea are also something many of us have to deal with on a regular basis. Our lunch can upset our stomachs and send us into a downward spiral of pain. We can be hit with the feeling of needing to run to the bathroom to vomit in an instant. Our body can all of a sudden respond to something and swell up which causes horrible arthritis to the point where our fingers don’t work and we can’t even use a keyboard. Many people don’t understand that these things really happen and can come on in a second. One minute we can be fine, the next we are physically unable to do anything.
“This isn’t feeling like we need a power nap – this is feeling like we need to sleep for 24 hours, as if we physically cannot continue even the most meager task.”
Ending the day
If we’ve made it through the day and somehow battled through all of the above, the day still hasn’t ended yet. We don’t get to just have dinner, see friends and go to bed. We aren’t able to just shut down and relax for the night. Our preparation for the next day starts the night before. We’ll eat safe dinners, prepare our medicine for the next day, get safe snacks ready and more. IBD patients have to work close to every hour of every day in order to be ready for whatever is next. Other people in the world get a break, we don’t.
Unfortunately, even during sleep, an IBD patient can’t finally get some rest and shut their bodies down for the day. Many people who suffer from Crohn’s disease or ulcerative colitis have trouble sleeping, too. Sleep issues can range from staying up during the night thinking about what they need to do to prepare for the next day, to continuing to battle to find comfort and get some rest, as well as… We have over-active bodies which leads to an overactive mind as well, causing us to lay awake with worry about what the next day will bring. When other people are preparing for the next day with sleep, we are preparing for the roller coaster ride that we will likely be riding over the next 24 hours.
Even if we are able to sleep, many IBD patients have to get up to use the bathroom frequently during the night. Those with ostomies have to get up a few times a night to empty their bags – and if they don’t get up once or twice, they will likely have a leak or overflow of their ostomy-- a stressful way to wake up. All of this just adds to the constant stress that those suffering with IBD have to deal with (which in turn can make the symptoms worse).
Patients with other chronic illnesses likely suffer from some similar symptoms and lifestyle changes that need to be made, but this is just a little insight into what it’s like to live with Crohn’s disease or ulcerative colitis. Each and every day is another battle, each week is something to get through and each year can seem like it goes on forever. Our battle is not like having a cold, gone in a week, but more like a war. A war which will be forever ongoing and one that may never find peace. A marathon, not a sprint.
But I’ve found that IBD patients aren’t the type of people that give up. We learn to deal with everything that is thrown our way – learning how to ride the roller coast and overcome hurdles with adversity to live a good life with IBD. Most importantly, we make sure that all the stress and pain that we deal with on a day-to-day basis does not defeat us or take control. We make sure that we live for the good things in life and enjoy what we have, even if it’s a little harder on the bad days.
_Brian Greenberg is founder of the Intense Intestines Foundation. He primarily works as an advocate to help patients with Crohn’s disease, ulcerative colitis and ostomies. You can reach Brian on Twitter @BrianII For email at Brian@IntenseIntestines.org. If you would like to connect with the IIF more please visit the Facebook and Twitter pages. Also be sure to join Brian in the conversation about all things IBD on the IBDHealthCentral Facebook page. _
Brian Greenberg was diagnosed with Crohn’s disease at age 11. His freshman year of college, he began a roller coaster ride of flares, hospitals stays, major surgeries, and more, with brief breaks of good health. After having an ostomy surgery 6 years ago, making it permanent 3 years ago, he is happy with his quality of life and enjoys helping others with their health journeys. When his health cooperates, he enjoys triathlons, hiking, climbing, skiing, and more.