Crohn’s disease and ulcerative colitis can make life anything but normal. The day-to-day battles which an IBD patient faces can be incredible tough. They look like obstacles which are standing like HUGE walls in front of us, keeping us from the other side and a normal life. But we have to do what we can to get over those walls. It takes effort, perseverance and a desire to have the highest quality of life that our disease will allow.
So what does a typical day look like for me? I’m a Crohn’s disease patient that has been through more than thirty surgeries and has an ileostomy, so even a typical day is anything but easy for me. Despite my disease or not feeling well, I still try to do everything I can in order to beat my IBD. I want to take you through a typical day in my life. You might be surprised at how much work goes into trying to be healthy. It does not always work but if I didn’t give it a shot, I could not sleep at night. I would be awake, knowing I didn’t at least put in the effort. You are about to see that it is a TON of work just to get through the day.
Before continuing on, I want to add that I go to the bathroom between 15-20 times a day to empty my ostomy. Please keep that in mind and how it would add to the day I am about to describe.
6:30am- I usually wake up easily. Most of the time this is due to the fact I don’t get truly deep sleep because of my IBD. This makes it a little easier to start the day as my body has adjusted to less sleep. Still I would much rather have a good dream and get some ZZZ. My Crohn’s has always kept me from sleeping and I rarely go through periods of good sleep.
7:00am- A quick breakfast which I know my body can handle. I only eat foods that are easily digestible at this time and won’t hurt my stomach. If I have orange juice or anything acidic my day is done. After that my stomach would hurt the rest of the day. Usually a Nature Valley granola bar or some eggs with a glass of milk.
7:15am- Make my protein shake for my workout. Yes, I know that you are supposed to drink this after a workout but it works better if I sip it during my workout. If I drink that much protein right after a workout it will go right through me. I also like to know I’m getting nutrition and hydration while I’m putting some stress on my body.
7:30am- I arrive at the gym. Currently I’m fighting some rectal pain but I still go. A workout usually combines cardio and resistance training. Lately I spend 30 minutes on a stationary bike, mainly because it won’t hurt the scar tissue in my body like running does. It does still hurt my rectum but I deal with it because I know it benefits the rest of my body. After I get off the bike I will work out with my TRX suspension trainer, it is easy on the body and I can use my own weight to build strength. It also works the core with every exercise, not in a direct way so it is easy on the stomach.
One of the bike shirts we had made in honor of Jennifer’s life.
8:45am- Take a quick shower and change my ostomy. The ostomy change is not every day but I would say it is about three days a week right now. It is a part of my day which has become like breathing. It used to bother me and be hard. Now I just change my ostomy without even thinking about it. Total time is about twenty minutes because I like to shower and clean the area completely before putting a new ostomy on.
9:15am- I sit down at my desk and start to work. Usually I do some breathing exercises to calm down my body and get any pain under control that my Crohn’s might be causing. Once whatever pain is under control, I make this time as productive as possible. Usually I have the most energy from my workout but know fatigue might hit any time.
10:30am- Take a short break to have yogurt or something that is easy to digest. It is around this time that I know how the rest of my day will go. If I’m already feeling fatigued, my day will be a struggle from here on.
12:30pm- Lunch time. Once again I try to eat something which I know is easy on my stomach. I also make sure that this is not a large meal. It is much easier to digest smaller meals throughout the day, so I will have a can of tune in olive oil usually. I stress the olive oil because it can actually reduce inflammation, vegetable oil can actually causes inflammation. A side will be a few homemade potato chips which I bake in batches and have around. Sometimes I’ll have some all natural cold cuts with no added salt or preservatives. I don’t have bread, as I try to keep a low gluten diet.
2:00pm- Fatigue usually starts to set in no matter what at this point of the day. Some pain might come back as well. This is another moment in the day that can either make or break it. If I get up and walk around a bit to get my blood flowing or even do a few push ups it usually helps my energy level recover. Wish grabbing an option was a cup of coffee or an energy drink like most people but that would tear my stomach apart. During this time of day I start to fight some pain possible, still I battle through it. It would be really nice to take a nap but I only allow myself to do that if it is extremely necessary.
Some of my juicing ingredients.
3:30pm- Juicing time. Technically I don’t juice, I blend. This is an all organic smoothie which I credit with healing some of my IBD. Usually it combines various berries, a banana, various greens, flavored kefir milk, probiotics, anti-inflammatory powder, digestive enzymes and more. It changes from week to week on what is available and what my taste buds are screaming for. (I will be having another post soon in more depth about the smoothies I make)
5:30pm- Almost time to call it a day. At this point I can feel tightness in my body. I’m not sure if this is IBD related or stress related but it is hard to deal with. My stomach is tight, back and more. This body has already been through a lot, so I know I need a break. I stretch a little, watch some TV and do more breathing exercises to relax my body and stomach.
7:00pm- Dinner time. This is the one meal a day that I allow myself some freedom with. It usually is something very healthy but it might be whatever I’m craving that night. A burger without the bun, seared scallops or salmon, roasted or grilled chicken are some examples. I will try to get some vegetables in me even though it is hard. I have to steam them no matter what. I’ve found it makes them a little easier to digest. Some times I might toss them in olive oil and put them in the oven for some extra flavor. I’ve kept a journal about what my body digests well and what it doesn’t, so I know what foods to stay away from. Shell fish for example is a big NO for me and of course veggies such as corn but I’m sure you knew that.
Cajun blackened salmon with steamed/roasted Brussels sprouts.
9:00pm- Relax for the night and prepare my body for the next day. It’s been a long day and I’m very tired at this point. If my body is going to be in pain, this is when it is going to be. Usually I make sure that there is nothing important on my to-do list at this hour. Time for me to enjoy and relax in whatever manner I choose. Sometimes I see friends, watch a movie or just laugh the night away with my girlfriend.
11:00pm- Hopefully by this time I’m tired enough to get some ZZZ. They might not be great but I will still try to roll around in bed until it is time to try to beat my Crohn’s another day.
As you can see the day is filled with many choices. Not only choices about what to eat and how to treat my body but also a choice to carry on and not let my IBD control my life. Don’t get me wrong, when I’m flaring just like anyone else there is not much I can do. Even on the days which I’m not in a flare, I’m still battling to get through the day. It takes a lot of work to eat right, juice, exercise and keep my body going but it is a choice. We only get one chance to live and I rather do everything I can to give myself the best chance at having a normal quality of life. Even when I’m sick I can at least say that I tried and know that I gave it all I can to get to the other side of that wall I mentioned earlier.
Never Stay Quiet!
To help patients with IBD, please consider a donation to the Intense Intestines Foundation. Your contribution will go to the Intense Intestines Scholarship, Never Stay Quiet video series and to help patients with the medical treatments.