How I've Become Stronger Because of Crohn's Disease

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I recently came across the following quote, “It doesn’t get easier. You get stronger.” Those words made me pause and reflect on my personal patient journey and also think about how I give advice to those in the inflammatory bowel disease (IBD) community.

While I believe the diagnosis and the initial flare-up that hospitalizes people is probably the most earth-shattering to many of our worlds, maybe as time goes on we just become a bit desensitized to the worry and all the pain.

Each flare-up and rough patch has its own set of memories. Even after more than a decade of fighting an illness that’s become a big part of who you are… it’s still just as scary as they roll you down for the abdominal CT scan to see what’s brewing. It’s still just as worrisome when your significant other races to the hospital and you walk through those ER doors, knowing you won’t be going home. Each of these moments builds up our strength, even if while they are happening we feel weak and out of control.

I’ve come to realize that all my hospitalizations are a bit of a blur. They are hazy in my memory. Maybe I’ve blocked them out. The clearest moments are those when I get to go to home.

That first walk at the park after being in a hospital for days on end. Getting to eat a full diet and saying “so long” to the clear liquids. Staring out the window of the car while “Fight Song” played on the radio after my bowel resection. Looking in the mirror at my battle wounds and being proud of what I’ve endured to get to this place, rather than ashamed. Taking that final Prednisone pill and surviving another wean-down process. Those are the times that make us all stronger.

We come to a place where we’ve overcome our difficult present and gotten to those brighter days. You must not sell yourself short. You need to soak it up and give yourself credit — because no one around you truly knows what it’s like to be in your shoes. We can have similar experiences, medications, surgeries… but, each of us has a unique story to share. Battling IBD is certainly not sunshine and unicorns, but it makes the feel good days much more beautiful.

The writer with her husband and dog, standing in front of a lake.

We learn not to take anything for granted — whether it’s feeling good after a meal out with family and friends or getting to attend a wedding and not feel any pain while you’re on the dance floor. Those are the times we celebrate. It’s verbally getting to say to my husband, “I feel so good today.” It’s finding joy in the times when your disease gives you a break and you can feel like everyone else. It’s having the energy to take my son on a long walk and breathe in the fresh air, pain free. It’s eating popcorn as I type this and not feeling any repercussions!

So while Crohn’s is a roller-coaster of emotions and experiences, there is one constant through it all. Not just for me, but for you, too. We are strong. We are resilient. The struggles and pain are fleeting, they will pass. Just as those amazing and happy days will. Live in the now — don’t stress about tomorrow, and only look back to recognize how far you’ve come along the way. When I think of myself before Crohn’s, it’s almost like a different person.

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When the Disease I Knew Introduced Me to the Disease I Feared

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My journey with Crohn’s has been a long and winding experience. Not only has it taken a physical and mental toll on me, but I’ve suffered with it for the majority of my life. I was diagnosed at 10 years old when the only care I should have had was which backpack to get for the new school year. Instead, my parents and I were saddled with medications, procedures and doctors’ visits to squeeze in before fall came and the bell rang.

Aside from the difficult nature and logistics of my condition, my age excluded me from learning additional details of the disease. There were other factors of Crohn’s that I was not privy to as I was just a kid. Every piece of information was filtered. I was just there for the ride and when new problems arose, we listened intently as the doctor explained. As I grew and faced new challenges in my everyday life, my disease became somewhat forgiving. I essentially breezed throughout middle school and my freshman year of high school. I wasn’t technically in remission but it was something I was happy to accept.

The tide began to turn between my freshman and sophomore year of high school. I became angry. Then I became sad.

My friends and I were growing apart and I was tired of watching my brother and sister live their lives with social events, while I was stuck at home playing Gamecube games. I thought I could explain it away. Yet, all of a sudden, I didn’t want to get out of bed. I didn’t want to open the curtains in my room. I was in the fall semester of my sophomore year and my grades began to fall. I hit the bottom fast. I started hurting myself.

Misery was my best friend and my enemy. It came in the form of a broken piece of glass and the upstairs toilet. I started getting nauseous while going to the bathroom. My stomach started to ache once more. I was scared out of my mind.

Ashamed of what I thought to be a disgusting disease, and my lack of self-control, I kept hurting myself. My grades kept dropping. There was nothing worse than feeling lonely, gross and hopeless. I thought I was a lost cause. My depression was swallowing me and the few gasps of air I had left were precious. I searched for reasons outside of my own mind for feeling this way and came up empty. What was going on with me? Why couldn’t I shake this leech off of me?

I slowly began to get better both physically and mentally and pulled myself from the bottom of that gnashing pit. What had I done to achieve this? The answer is… nothing. It just stopped. It was such an unsatisfying conclusion to come to. It was almost as if I simply forgot about it.

The rest of high school went by fairly smoothly. I found my way back to my friends and renewed my interests in my favorite subjects. I started dating my high school sweetheart and formed new friendships. Everything was as peachy as it could be for a high schooler. My graduation night was also the same day as my 18th birthday. There was so much to celebrate! I did have a hard time getting up to the stage because of the massive cyst on the back of my leg. But, eh… who cared? I was 18 and I just graduated high school. Eat my dust!

Except that didn’t really happen. No one “ate my dust” but me. From that time on, I experienced the worst of my disease. I was in and out of the hospital, lost weight and gained weight, other physical symptoms came and went and my mental health was delicate. I thought I’d ditched that monster. When it began to interfere with my college courses, I started to lose faith in myself. What was the point of trying if I was just going to have to keep dropping out because I was sick? I felt like a failure. All of my friends were graduating with degrees and living their dreams while I laid in bed unable to get to school. I never felt so low.

All of the other times I was suffering felt like nothing to me. Even as I started to make my way back to normalcy, I saw no point in reaching for my goals. As soon as I started, I’d just have to quit again. So I settled. The feeling of never getting what I truly wanted crushed me. My brain fog was too heavy, my depression was intimidating and my self-esteem was in the basement with broken stairs and no way back up.

I was 23 years old before I learned that depression and Crohn’s were closely related. Apparently, they go hand in hand. All of the reading I’d done and the doctors I’d seen never clued me in. I was elated yet angry. It wasn’t just me. It was several people living with Crohn’s. It was like I’d seen the light. Finally, I felt like I had a reason behind all of this anguish. I’d been battling my demons for close to a decade before I found any kind of answer. That is not to say that everything suddenly became OK, but I had something tangible. I could point to these studies and anecdotes and say, “Look! They’re just like me.”

Working on myself has never been my strength. I’ve given into my worst impulses too many times to count. Now I have two diseases to conquer.

I have currently been in remission for close to three years now and but I’m still fighting with my mental health. The biggest difference is my awareness surrounding it. I have other Crohnies to turn to. I can hear their stories and ask for their advice. Sometimes I wonder what would’ve happened if I’d made the connection earlier in the life. There are too many possibilities to consider, and who knows? Things could have turned out exactly the same. Every day is a test. Will I wake up and want to die? Am I going to spend most of my day in the bathroom? Or will everything turn out alright? Pass or fail, I know this much. I’m a fighter, I’m still here and I’m becoming OK with that.

If you or someone you know needs help, visit our suicide prevention resources page.

If you struggle with self-harm and you need support right now, call the crisis hotline at 1-800-273-8255 or text “START” to 741-741. For a list of ways to cope with self-harm urges, click here.

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We Need to Stop Judging People for Taking Medication in Public

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Once I was out one night celebrating. No biggie.

I realized the time and knew it was time to take my meds – gabapentin for nerve pain and sumatriptan to prevent a migraine as I often get auras beforehand and try to prevent them. Again, no big deal.

But it was.

 

It felt embarrassing. I could feel people looking at me. Glaring. Judging. People who didn’t know me or know my journey. I felt so embarrassed that I even dropped a pill and had to get out of my chair to chase it down. If I didn’t have enough eyes on me before, I had double now. This overwhelming feeling of guilt took over as everyone saw. But why?

I think there is a stigma that surrounds those who take medication, no matter the medication, the illness, the reason. Assumptions of a dependency come, but not assumptions that I depend on it for legitimate reasons.

Without medication, I get sharp pains near and around my breast and armpit. It’s as if I’m touching an electric fence for a little too long. Without medication, when I begin to see stars and auras, a migraine is sure to come. Without daily medication or infusions, I would not be trying to manage my Crohn’s disease, no need to be embarrassed.

These infusions sometimes leave bruising and needle marks on my arms, sometimes it takes more than one poke, let alone the time I went to phlebotomy school. Judgment comes from every peering eye. If I choose to wear my face mask to the hospital to protect myself and my weakened immune system, even there I’m met with glances and whispers.

Without medication, I would get cold sores on my mouth; without medication, I’d not be managing my mental health. Without medication, I would still have a mass of dermatology problems and I would still be dealing with each of these issues. I still battle with daily issues but without medication it could be worse.

So why should I feel embarrassed or ashamed? Why should I feel nervous taking my medication in public? Why should I sense watching eyes and feel inferior for having to do so?

When casting judgment on those who take their medication in public, you could be making the wrong assumption. This could be vital for their health. Their saving grace. Their cure. Their livelihood.

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Dear Chronically Ill College Student: I See You

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Dear chronically ill college student,

Hi, it’s me – a chronically ill college graduate out in the world.

I want you to know I see you. You’re working so very hard to manage your illness, take care of yourself, go to class, do your assignments and have a college social life. It’s hard. I get it. And, I want to validate that. I know at times it may be frustrating to balance everything – to explain to your professors and peers you need help when you don’t “look sick.”

 

When I was in my sophomore year of college, I found myself spending fall break in Cedars-Sinai hospital. In the weeks prior, my Crohn’s had begun to flare badly. I chugged down gatorade instead of going to meals, I attempted to sleep instead of studying and I shuffled to class in my yoga pants and a ratty t-shirt. Not only was I struggling to get to class and do well, but I also felt like I was struggling to take care of myself – I could not figure out how to do it all. Thankfully, I had an administration that supported me and parents who came out to school to help me get healthy. And, even though I managed to finish the semester and graduate, there were parts of being sick while trying to do school that felt so defeating.

woman holding her college diploma

So, I get it. And, when you need a little extra encouragement, here are a few things to keep you going:

– Always remember that you know yourself better than anyone else knows you. Listen to your body and do what you need to do to take care of it. Even if that means asking for help.

– There are people who want to help you. Believe it or not, professors and deans want you to succeed. You’re there to learn and to do well. They may not always be familiar with your illness or the kinds of accommodations you need. So, find someone in your corner who can advocate for you. This could be a professor, a dean or even a friend. You are already working hard to take care of yourself and do your required schoolwork. Find someone will go to bat for you and let them do it. There are tools like note takers, extended testing and late assignments that are there for you to use. Find out what’s available and take advantage of them. And, know that using them is not a reflection of your self-awareness; it does not make you “weak.”

– Not succeeding the first time doesn’t make you a failure. The academic system was built for able-bodied people. The majority of students who are in school are not also managing a chronic illness. If it feels like it is difficult to do it all, that’s because it is. So, if you don’t do well on a test, know I validate how and why it was hard for you. And, if you need to take some time off from school to manage your health, know I think that is one of the bravest decisions you can ever possibly make. Everyone’s path is different. Don’t let yourself think that just because yours is not traditional doesn’t mean it is anything shy of amazing.

– Know you are doing the best you can. You are working hard – even if that means taking a nap. Your time management skills are better than most other students’,  simply because you have more to take care of and less time to get it all done. I want you to know I validate what working hard means for you, because taking care of your body is some of the most important work you could possibly do.

woman in her cap and gown after college graduation

– Going through college is hard. Going through college with a chronic illness is even harder. I see your pain and I validate your struggle. Know as your health needs change you will continue to learn how to take care of your body. Quite often, college is the first time chronically ill folks are out on their own to manage their care. It’s always a learning process and it’s a challenge.

You are doing the best you can and I believe in you.

Be strong and brave out there.

Sincerely,

A chronically ill college graduate

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7 Ways to Manage Your Crohn's Disease in the Office

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I am a full-time marketer for a corporate software company. It’s a great place, with amazing people. When I was hospitalized and then healing, they were so unbelievably supportive and understanding, which is hard to say for a lot of companies. My team surprised me by decorating my entire desk in Iron Man gear when I returned from getting my iron infusion.

If you have Crohn’s disease, you know it’s such a pain in the ass… literally.

Symptoms differ from person to person, but for the most part, you can expect to deal with:

1. Abdominal Cramping

2. Diarrhea

3. Fatigue

4. Bloating

5. Loud Intestinal Noise

So, how do you deal with the above while trying to live a “normal” life in the office? All of those symptoms make daily life pretty difficult, but there are ways to make it easier on yourself and those around you.

1. Be honest about your disease with your colleagues.

This may be hard. Crohn’s can be embarrassing, for sure. But it gets way easier if you maintain a sense of humor, and love a good poop joke: Did you hear the one about the constipated composer? He had trouble with his last movement.

When I was first diagnosed, I told my boss and team right away. I wanted them to know that if I needed to be out for a day, or if I seemed to be “off,” it wasn’t me slacking… it was just my intestines playing dirty tricks on me.

2. Try to get a standing desk. 

Seriously! This may seem counter-intuitive, because when you’re flaring, the thing you want to do most is lay down and not move. But on days when you can stand it, try standing up. I felt that sitting all day was crunching my intestines in a way that was preventing healing. I was luckily able to get a sit/stand desk that allows me to spend a lot of my day upright, which is helping.

3. Try not to get embarrassed.

If you’re like me, and your intestines make noises that sound like an alien is going to emerge from your body at any moment, then you will be in situations where your going to get weird looks from everyone in the room. Just try to roll with it. I let everyone I am in meetings with know that if they hear my stomach, it’s normal. I’m fine, no I’m not starving, and no I’m not going to have to run to the bathroom… OK, maybe I leave that last part out, but I do keep them in the loop so that way when it does make noise, which it almost always does, we can just continue along our business. A positive note – it has definitely lightened the mood in many meetings. If there was tension, my intestinal noises sure loosened it up.

4. Get comfortable “going” in public places.

We all know by now that Crohn’s, or colitis, or irritable bowel syndrome (IBS) means that you’re going to have to get really familiar with going to the bathroom at your office. I know it’s awful, not fun, and frustrating. But try to time it where you can have some “you time.” Or, find a bathroom that has a little more privacy. I knew a guy who would drive to the local coffee shop every morning to do his business. Hilarious, yes… realistic? Not really.

5. Work from home on bad days if you can.

Thankfully, I’m able to work from home on days when I’m in a lot of pain and have a hard time functioning at the office. I post up on the couch with my laptop and try to lay still, and usually, just one day helps reset myself enough to be back in the office the day after. Talk to your boss and see if you can work out an arrangement where you can telecommute when you’re flaring.

The writer of the article at her desk, decorated with Iron man items.

6. Bring your own snacks.

If you stick to a restricted diet like I do, it’s imperative to have snacks that are ready that are good for your diet. In my drawers at any given time, I have some soups and broths, paleo granola, apples, LÄRABAR, RXBARs, EPIC bars, and more. I’m always prepared!

7. Learn to say “no.”

Stress can be a big factor in a lot of inflammatory bowel disease and IBS. If you’re finding yourself under water, try to reprioritize your duties to keep it from feeling like the weight of the world is on your shoulders. Also, saying no means that if you’re not up to a Happy Hour with coworkers every week, skip it. Or attend, but stick to water and head out early. No one is going to judge you for taking care of yourself, and if you are open and honest with your colleagues, it makes the conversation that much easier.

Yes, we have bad days, and yes, being home sometimes sounds so much better than putting on a happy face for the office. But, being around people who support and love you can make all the difference between feeling isolated and feeling embraced. If your office doesn’t have people there that you can confide in, maybe it’s time to find somewhere that does. There are good people every where… you just have to look for them.

Follow this journey on Chronically Callie.

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What I Wish My Able-Bodied Friends Knew as a Person With Chronic Illness

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This is a difficult article to write simply because it could be easy to interpret it in the wrong way: “Oh, so you don’t appreciate our help,” “You know, we are trying,” “It’s not all about you – we have lives to live, too.”

I know my friends would not say these things, and they probably don’t think these things, but living with a chronic illness can make you feel like you are disposable. After all, if I abandon you then you can continue living just as you were. You’ll find new friends and you can move on. But, if you abandon me, well. I don’t have the same capacity to meet people, to form new friendships, to continue old ones. I am at your mercy. I can’t join your world, so I am left hoping you’ll continue to visit me in mine.

 

If there was one thing I wish my able-bodied friends understood it would be: I am, to a degree, dependent on you to come to me.

For example, today is my second day out of the hospital. My friends are going for a meal out and they want me to join. They’ve checked – the
food I can eat is on the menu. Why not come, it would be good for me? But what they don’t understand is it isn’t that easy.

Fresh from the hospital, I may look the same but my body is tired. I can’t walk as far, I can’t manage social interaction for more than 30 minutes. I can eat again, but before I got home I was nil by mouth for more than 60 hours to clear a bowel obstruction. I cannot eat large portions of food until I know I won’t become obstructed again.

So, they’ll go off and have fun. Then they’ll return, more food, more
laughs. And I’ll feel a bit more alienated. I’ve ended up spending
another day alone. You might say it was my choice, but this does not feel like a real choice.

I think summer is harder. It’s hard seeing all my friends go off on holidays, form new relationships, get new jobs, move away and start families when I’m stuck at home trying to entertain myself. “You should come,” they say, running off into the sunlight. It isn’t that easy.

I remember one friend of mine was upset because their holiday was cancelled last minute and they had to spend nine days at home. They moped for the weeks running up to it about how unfair it was, then spent the week seeing friends and went back to work. What they didn’t realize was they were entering my world for nine days. They were entering the space I’ve been sitting in for almost a year for nine days. And they couldn’t hack it.

What frustrates me the most is I know if many of my friends went into the hospital, they would expect different treatment. They’d be upset if all their friends went for a meal without them once they were out. For them, being in the hospital would trigger a mass outpouring of concern and help.

But me, well, for me it’s “normal.” “It’s not the same.” “I’m used to it.” Let me tell you – you do not get used to the hospital. You do not get used to the pain. The boredom does not become more tolerable and the loneliness isn’t easier to bear. It gets harder, it adds up, it piles on and makes life that much harder to get on with. But, like a soap opera that drags on for too long, people get bored. They want something new. Meanwhile, I’m left to get on with it like I have for 15 years. Like I’ll be forced to for the rest of my life.

And, childish as it sounds, it is not fair. It is not fair that you get to go and live your life while I’m put on hold. It is not fair that your difficulties, however minor, are treated with so much more concern than mine. And, it is not fair that I feel I have to quiet my story to make it easier for you to
tolerate. Because, frustrating as it is, my choices are not your choices. I need you more than you need me. And it’s me that needs to work out how to make this work, not you.

I wish you understood that.

I wish you knew our friendship is like that between two birds, one in a cage and one out free. If the free bird doesn’t visit the caged bird, the caged bird can do nothing but hope, and wait, and sing out for the free bird.

Well, this is me singing.

The song might not be pretty, but it’s my song. How will the free bird respond?

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Thinkstock photo via IgorKrapar.

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