Living with Crohn’s disease or ulcerative colitis is never easy. It’s a daily battle that many don’t understand.
Most people roll out of bed, feel fine, and begin their day without any problems. For many patients with IBD, life is completely different. From the moment we wake up each day, our lives are different and it can be a battle just to get out of bed and get our bodies moving. And that’s if we don’t have to run straight to the bathroom to start our day.
Once our day gets moving, we have to ride a roller coaster. Not only of physical hurdles, but emotional ones as well. This can easily take its toll on us in many ways, including extreme fatigue and stress which can bring on a flare. It almost seems as if our daily lives become an episode of Mission Impossible, just trying to stay one step ahead of the bad guy: That’s IBD!
But what happens when the bad guy wins for a little while? You battle back and forth, and then you slowly begin to feel better. The flare has begun to pass and your body begins to feel it, but what makes you even happier is that your mind begins to know it is starting to pass. Now what? Get back to “normal” life, right? Nope! There is a giant mountain that needs to be climbed in order to get back to whatever is “normal” for us, and many will never understand this.
So how do we do it? How do we get back to being active again after a flare? Or a surgery for that matter?I can tell you it’s not easy. I’ve had more surgeries than years I have lived and I’m 33. Many members of the IBD community (I like to think of us as a family) ask me how I do it. How do I become so active again and somehow have energy? Here are some tips that I want to share that might just help you become active after a flare or surgery.** Take it slow, but also push yourself**
When a flare begins to calm down I never know what to do. Part of me wants to go out and run, jump, wave my arms, anything and everything my body will allow. The other part of me says, there is no rush, and I should pace myself since my body has just been through a lot.
This is a balance that we all have to figure out for ourselves. We need to start slow and allow our bodies to acclimate to being active again. For weeks or even months, our bodies have done very little. If we dive head first into something too fast, we might just put stress on our bodies and minds, and we all know how that will end. So normally I sit down with my calendar and plan out some activities that will allow my body to adapt to being active. This starts with little activities and then slowly grows into bigger ones.
The balance we have to find is pushing ourselves a little bit. If we do the same activities over and over again we will not get our body truly moving again. We’ll become familiar with the activity, and not only will our body get bored with it, our mind will too. So once I’m moving a little better, I plan out activities I know are in my comfort zone, but also push me just a little bit.
This will get your blood flowing again and you might begin to notice a difference in how you feel. That’s you starting the road to recovery again!** Listen to your body**
After being sick with a flare or recovering from a surgery our bodies are weak and our minds are even more exhausted. This is why it’s important to listen to your body and take that time to figure out what is best for you.
Each day I wake up and have a plan. Now that I’m a triathlete, it’s usually swimming, cycling or running. In order to cross the finish line of one of my races, you’d think that my workouts are the most important part of my routine, right? The answer to that is NOPE! I have to adapt to what my body will allow that day.
I’m still battling rectal disease, even though I had my rectum removed. This means that I take time at the end of every day to think about what I might want to do next. Usually this means meditating for 10 minutes to give me some time to get in touch with my body. After that I formulate a plan for when I wake up. But there are many days that my back side is still hurting me, so cycling is out. And running isn’t always the best thing. So I listen to my body and I adapt by either swimming, using the elliptical, or some other workout that my body will allow. We HAVE to listen to our bodies.
Now I’m not saying that diet will improve your IBD, and I’m not promoting a particular diet. For many of us diet won’t work and I’ve tried all of them. But if we eat clean and healthy foods, we’ll naturally have more energy.
I go through spurts, but when I juice on a regular basis, I feel so much better. Not because it’s helping my Crohn’s but because I’m getting key nutrients from fruits and vegetables that I normally wouldn’t eat. My output from my ostomy is thicker because I’m digesting more and overall I just feel better. The difference in how I’ll feel after eating a comfort food meal and eating a clean meal is amazing.
That’s not to say it’s easy. It actually takes a lot of work. Keep a log of what you eat and how it makes you feel, not just for your IBD, but also just in general. Track your energy level, mood, everything! Don’t just try it for a week, try it for a month at least. If you do, you might just see some amazing results in your activity level and you’ll have some more energy too!** Create a support network**
Many of us learn how to deal with our IBD on our own. We are taught at a young age not to discuss what happens behind the bathroom door and even though IBD goes far beyond the bathroom, many times we teach ourselves not to talk about it.
But it’s okay to talk about it with your family and friends! For years I didn’t talk about my Crohn’s. Only a few very close people knew about it and I was fine with that. But I felt like I was hiding from my friends, not telling them a secret that I had. Constantly wondering what their reaction would be if they found out. Around the age of 19, my Crohn’s became too severe to hide anymore and I had to come out about it. Since then, I’ve felt sooo much better, and a weight has been lifted from my shoulders.
This has led me to create an amazing support network which I can lean on when I’m healthy or when I’m sick. My friends are always there for me and at times I’m still amazed by them. Now, you may be thinking, “What if a friend reacts negatively?” Then you have to ask yourself how much of a friend they are.
I usually have given a person at least one chance to come around and let me explain what IBD really is. If people don’t want to accept it, they are gone from my life. There is nothing I can do about it and our friendship might not have been that good if I was keeping a big part of my life from them either. Keep in mind, your IBD won’t keep you from meeting the right people, it’ll keep you from meeting the wrong people.
This is a big one that everyone must do. Setting goals is important, because it gives you something to strive for. A reason to get out of bed, even if you don’t want to, or if you have nothing else going on. It’s always good to have small, medium, and large goals.
Now I’m not saying when you get out of a flare you should set a goal to run a half marathon, that’s just crazy. But let’s say that is something you wanted to do? A lot of my goals come from what I think I would have been doing if I had a healthy body and that’s what led me to becoming a triathlete.
But going back to the 13.1 example: you are just getting out of a flare and you want to do something. Think about what you would have done if you never had IBD and if you never had that flare. This can be your ultimate goal.
But while you are recovering, set smaller goals along the way in order to slowly allow you to reach your ultimate goal. You first need to start small and slow. This goal might be to walk around the hospital floor or your home. Walk up a flight of stairs or take the dogs for a walk. Then you grow from there with a goal to walk your dog or go out for a walk with a friend.
Now you have confidence, you have energy, and you are getting excited about what is possibly ahead. Now you set out to jog/walk two miles. You completed that and then you keep slowly working your way up. Completing these small goals will allow you get the sense of accomplishment. There’s a sense of crossing your own finish lines and I will tell you, it feels GREAT!
Many members of the IBD community ask me how I have energy and I will always tell them my goals are what drive me. They are what give me the energy to keep fighting every day and cross whatever finish line is ahead of me.
Recovering from a flare or surgery is NOT easy. We need to take our time, we need to set small goals, listen to our bodies, eat right, and more! But I’m here to tell you it can be done. You can regain your life from Crohn’s disease or ulcerative colitis. You can win!
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 at @BrianIIFor email at Brian@IntenseIntestines.org. If you would like to connect with the IIF more please visit www.Facebook.com/IntenseIntestines, or www.Twitter.com/NtenseNtestines. And you can 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.