selfie of three sisters in the car

What My Sisters Mean to Me in My Battle With Crohn's Disease

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What it means to have a sister is different for everyone. It could mean someone always stealing your favorite clothes, someone to give you advice or someone you can sing at the top of your lungs with driving in the car. To me, having sisters means two great friends I can count on for anything…and I mean anything.

selfie of three sisters in the car
A selfie of me and my sisters before singing in the car

My sisters, Lauren (19) and Anna (17) are brilliant people in both the intellectual and compassionate sense. When I was first diagnosed with Crohn’s disease almost seven years ago, I tried to hide my pain and suffering from them. I was embarrassed and did not want them to see what I was going through. I even resisted their visits during hospital stays. Being the oldest sister, I felt as if I had to always put on a brave face. Eventually, I learned that letting Lauren and Anna into my life in that way would turn out to be a great reward.

When I started sharing publicly about my Crohn’s disease, I worried my sisters would be uncomfortable with their friends and teachers knowing such intimate details about my illness and how it affects our family. I have said this before, but Crohn’s disease not only impacts the patient, but those around them as well. My sisters have seen me at my worst, in hospital beds not being able to walk, recovering from surgery, sleeping for days at a time. I will forever worry about how my disease affects them and has affected them in the past. But through thick and thin, they have treated me the same, and we have grown closer during my struggle with my disease.

My Crohn’s disease has forced me to mature faster than my peers, and to some extent it has forced my sisters to do the same. I cannot put into words how grateful and proud I am of them for not only sticking up for me and supporting me, but also actively advocating for me and others who struggle with illness.

In my most recent endeavor to raise awareness for Crohn’s disease, I have signed up to run a half-marathon. I am running on behalf of the Crohn’s and Colitis Foundation of America (CCFA) to fundraise to find a cure for this terrible disease. Last year at this time, I could not walk because of a severe flare and extraintestinal complications, so being able to do this is a huge feat. Moreover, last year at this time I would not breathe a word about my disease to anyone that did not need to know. I have come so far in accepting my Crohn’s disease, and I owe a lot of that progress to my sisters.

When I told Lauren and Anna about this endeavor, they were so supportive that they offered to help me in my fundraising efforts. As I type this, I get teary-eyed thinking of how much their support in this way means to me. Both of my sisters are spreading the word about my fundraising to their friends and also to organizations and events in which they are involved. Their willingness to fight to find a cure on my behalf leaves me at a loss for words. As I have come to accept my disease over the past several years, they have as well.

Those struggling with an incurable disease know how difficult it can be to let others into your life in such an intimate way so as to understand your daily struggle. There is something so deeply comforting about knowing the ones you love stand behind you through thick and thin, and I encourage anyone who pushes others away from whatever battle they are fighting to push a little less. Both of my sisters bring love, humor and support into my life at times when I need it the most. I am forever thankful to them for being who they are to me.

You can donate to the CCFA on my behalf and support my half-marathon here.

Follow Ashley’s journey: @ashleyesper || AshleyEsper

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What the NFL Should Have Known Before Suspending a Player for Medical Marijuana

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The NFL recently suspended Buffalo Bills offensive tackle Seantrel Henderson for violating their substance abuse policy. On the surface, that sentence doesn’t seem overtly controversial. The NFL has policies against drug use, and players who use drugs, as a result, face consequences.

But if you dig a little deeper, there’s a lot more to this story. The substance in question is marijuana, and Henderson was prescribed the drug by his doctor to treat Crohn’s disease.

As a lifelong rule follower, I understand the need, especially in a major organization like the NFL, to be unbending with your rules and regulations. However, as a patient with Crohn’s myself, this news is unendingly frustrating. As America progresses and marijuana is legalized for medical use, organizations like the NFL need to adjust said rules and regulations accordingly.

Many will argue that Henderson has a choice — after all, there are so many medications out there, he doesn’t have to go the route of medical marijuana, right? But this is a privileged and ableist viewpoint that ignores the struggles patients endure in trying to find the right medications to treat their specific and ever-evolving case.

For one Crohn’s patient, Tylenol and positive thoughts might be enough to deal with the abdominal pain that is a hallmark of this disease. For others, essential oils and a heating pad might do the trick. For some it’s antispasmodics. For more still, it’s opioid pain medication — which comes with a lot of other tricky and frightening issues, like potential addiction. And for another class of patients, like Henderson, they’ve found medical marijuana does the trick. This doesn’t mean that the people who take only Tylenol are strong and those who need painkillers or marijuana are weak, it simply means that every case is wildly different, with extremely varying amounts of pain. It’s best to defer to the patient’s doctor who, in Henderson’s case, clearly believes marijuana to be the answer.

For my personal case, we’re still in a long line of trial and error to figure out what will help me get through the pain. But if Seantrel Henderson has found medical marijuana to be his lifesaver, he shouldn’t have to choose between his football career and a medication that allows him to alleviate some of the debilitating pain that accompanies this disease.

This story and the responses to it are precisely why increasing awareness for IBD is so important. The uneducated responder will say Henderson should just try a different medicine, or that he’s just using his Crohn’s as an excuse to do drugs. They’ll say they knew someone with Crohn’s once and it wasn’t that bad, so they’re sure Henderson’s case isn’t either. They’ll say all sorts of false and insensitive things that all stem from a lack of understanding.

So for an institution like the NFL, that gives its players a slap on the wrist for horrific crimes like domestic violence, it seems unconscionable to take such a hard stance against a man just trying to get by while dealing with a chronic illness. The fact that he’s been able to manage his disease to a point of being a professional athlete is truly inspiring, and we need to do more to help advocate for patients — not punish them for their modes of treatment.

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Please Don't Skip Over the Stories About IBD You See This Week

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Today is the first day of Crohn’s and Colitis Awareness Week.

I spent the majority of the day in bed because of the pain and bathroom trips that kept me up last night, leaving me exhausted and still in pain today.

I’m like any other wife and mom. I have two kids and a great husband. I pack lunches, do laundry, sign agendas.

But I’m also very different from other moms.

I have a port in my chest for infusions and other medications and can give myself fluids when I get dehydrated to help cut down on emergency room visits. I have nurses in my home once a week, drawing labs and accessing my port taking my vitals. Sometimes they’re the only visitors I have all week.

My kids know Mommy is tired and Mom’s tummy hurts. They know that when I say, “Bathroom now!” I mean run in the direction of the nearest one.

Every three months I leave my family and drive over two hours to see my IBD specialist. If I’m lucky it’s a short trip. When I’m not lucky it involves tests, barium drinks and surgical consults.

In fact, the whole family is making a trip to the University hospital with me in a few weeks. Instead of Christmas lights and Santa festivals, we’ll be at a hotel room near the hospital, so I can have some more tests done. My husband will do his best to distract them from the reality that surrounds them.

I’ll put on a brave face and smile…

Tell them, “I’m OK, this is nothing, a piece of cake.”

I’ll try and hide the pain and pretend I’m not scared as I kiss them goodbye from the pre-op room. I won’t tell them about the loss of dignity or embarrassment that goes along with this disease or what’s needed to treat it.

Sometimes you’d never know I was sick. There’s nothing more frustrating then hearing those words: “But you don’t look sick.”

I know people mean well, but they can’t see the battle that’s going on in my body.

So this week when you’re scrolling through your feed on Facebook or Twitter, don’t skip over the purple ribbons or stories you see. Take a few minutes and learn a little about these debilitating diseases.

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When Comments by Medical Professionals Hurt

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As we age, I think we build a mental library of “what the hell” moments. Through my medical journey, I’ve stared blankly at my fair share of people, taking in every detail for my WTH library. Lately, those moments have been the fuel for my anger. They make me wonder if the people we go to for help forget that we’re intelligent, competent or even human.

Since April, my ileostomy stoma has been the Sheldon to my Leonard. Struggling to live with him, but unfortunately can’t live without him. However, my version of “The Big Bang Theory” lacked the laugh track and genius best friends. I’ve been struggling with intense, sharp pain and mechanical malfunctions on a daily basis. Imagine the stinging pain of a scraped knee. Amplify it times four and place all that pain in your guts. Finally, throw in some obstructions and strictures, sprinkle in a few ileuses and bake at 350 degrees for 30 minutes. You’ve successfully made a pain that no one believes.

“Pain in your stoma? You mean around your stoma.”

“That’s not possible. Intestines have no nerve endings; they can’t ‘feel’ anything.”

Six months of ER visits, doctors’ appointments, pain, nausea, bleeding, the works, and these are the answers I get? I don’t have a medical degree, so how could I possibly understand my body? How could I accurately pinpoint the “discomfort” I feel within the body I have lived in for 25 years without that expensive piece of paper? Silly me.

“You look better than the last time I saw you, so it must not be that bad.”

No, you didn’t read that wrong. Yes, those words came from a medical professional. They were spoken before and after I was left in an ER room for three hours, waiting on a doctor who placed me on his lowest priority due to the above statement to even evaluate me. I sat for six hours before it was decided the specialists that could help me left two hours before my discharge. The next week, an exam found multiple ulcers terrorizing my ileum. They were the reason behind my pain. Pain, not discomfort or irritation. Pain. The ulcers were real. They were there. I had proof! I was finally going to get help!

Pfft.

Even with the exam and four months’ worth of CT scans showing the latest damage done by Crohn’s disease — nothing.

“Give it time. It takes time to work.”

“But you’re gaining weight, so that’s good.”

How much more time can I give something when my body is destroying itself? What am I supposed to do in the mean time? Ignore the bleeding? Laugh off the scream-worthy pain? Did you forget you’ve placed me on medication to up my appetite? And that the majority of my other pills have weight gain as a side effect? Are you kidding me?

I understand medical professionals may just see me as a file in their office. I know they don’t have to live with this body or cohabitate with me — living with the constant reminder that something’s not right. But I am a patient. I am a human being. I am a 25-year-old adult who had to place her professional and educational aside to care for this debilitating disease. I am a person who wakes up every day too nauseous to move because her guts are too inflamed to digest anything from the day before. I am stuck at home, foggy from the fatigue, pain and loads of medications it takes to even get me out of bed. I am the person people forget. But remember, I am so much more.

Before you feel the need to correct me or hurry to get me out of your office, remember my life revolves around all of this. We may only visit for a few minutes each month, but there are 43,800 minutes that I must survive until we’re sitting here again.

In those 43,800 minutes, 35,000 of them may be spent in distress. That leaves only 8,800 minutes to be a responsible adult. I have to cram to make an income, care for my loved ones, uphold familial and social responsibilities and, hopefully, make time to care for me in that time. That’s only 146 hours out of the month — that’s 20 percent! Any of the above mentioned quotes make me wonder if you think I’m only worthy of 20 percent.

Those “what the hell” moments make me wonder if you forget we are equals, merely separated by expensive certificates and a faulty immune system. Yes, you’ve got the know-how on what a body does. But I’ve got the know-how on my body. I know when something is wrong, where it’s wrong and how important it is to remedy it. And it is important. Period. It’s important to help me achieve stability. It’s important to explain a game plan and for us all to agree on it. It’s important that we’re a team working toward the same goal, and that I can trust you.

You’re trusting me to be honest and give it my all. I need to trust you to sense my urgency, acknowledge my pain and not be the head author in my WTH library. Because I’m sure that’s one library you would not want to brag about at the next Christmas party.

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When I Saw My Disease Portrayed on a TV Medical Drama

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It’s pretty uncommon to find mention of Crohn’s disease or any form of IBD mentioned on TV. That’s gradually changing as knowledge and awareness of “invisible illnesses” increase, but plots involving Crohn’s on peak-time TV shows in particular, are still few and far between.

I’m personally always pretty hesitant to watch a drama featuring my disease. The very idea that my condition is being using in a “dramatic” setting puts me off. It makes me feel my pain is being used solely for dramatic gain, and that is my device to use when I want the last caramel in the chocolate box — do not take that silver lining away from me, BBC! But I guess the same could be said for anyone who has had any form of painful experience in their lives; watching someone play act their worst moments out for ratings gain will always sting a little. But “Holby City (a popular medical drama here in the UK) covered my disease as part of their most recent episode, “The Kill List,” on November 21, 2016.

So I tuned in perhaps not expecting much more than a few crude jokes about bowel movements and generally feeling the patient would be “cured” upon leaving the ward. With hope that high, how could I be disappointed?!

What transpired was a surprisingly accurate, albeit very abridged, version of a Crohn’s disease diagnosis. Most patients’ diagnosis is a long and trying process, followed by countless tests, pain and hospital stays, but as the writers only had an hour to work with, we got a decent version of this, just at break-neck speed.

The patient in question was a doctor himself but had been avoiding facing up to his intestinal troubles. By the time he had fainted into the arms of his on-off-on-off-again lover (another doctor — these fake doctors don’t half get about!), he had been feeling symptoms for quite some time. The experiences of this Crohn’s patient mirrored my own in many ways, which was quite upsetting to watch. He was sent for a colonoscopy to confirm the consultant’s suspicions of Crohn’s; he then had emergency surgery due to “colon compilations,” and ended up having some of his bowel and intestine removed. When we awoke his first words were, “No stoma bag?” — this was the very thing I’d been so terrified of post-surgery.

We saw the surgery; this was the part that affected me most of all. Not because I’m squeamish, because those days are long behind me, but because it was all treated so matter-of-factly. It brought me right back to my own surgery where I was so prepared for the idea that these faces may be the last I see — I’d accepted I may have a stoma, the surgery may fail, or that I may not come round at all. It was terrifying. Watching these surgeons hold the patients internal organs in their hands, (yes, OK, I know it was prosthetics; I’m pretty sure our TV budgets don’t stretch to having actual cadavers), humbled me to know that saving lives is just a job for so many — something we all too often take for granted.

Overall the depiction of my disease in this episode was informative, if not a little frightening for those undiagnosed (or my mom). We saw the patient in excruciating pain, faint, sweating and thin. We heard him discuss his potential treatments — steroids where he worried his hair would fall out and he’d put on weight, immunological therapy — where he was dismayed at how prone to infection he’d be. All accurate and true steps doctors follow in treating our illness. But what really tugged at my heartstrings was when the patient said he’d be “ugly and useless,” something we’ve undoubtedly all thought if not said since we got sick. It’s untrue of course, but it’s an accurate depiction of how despite an illness being unseen to the human eye, it can still make us feel decidedly unpleasant.

I’m always grateful when programs and articles accurately portray my condition. I feel this episode certainly went some way to doing this. It didn’t sugarcoat the seriousness of it, it didn’t wrap things up neatly in an end-of-episode bow (we left our hero being advised he should acknowledge and take his condition more seriously), and it didn’t over-explain it, either. That left me with hope that this latest little nugget of awareness will leave viewers intrigued, and hopefully intrigued enough to learn a little more, or ask a little more of that friend, colleague, stranger at the bus stop they know has it. Or simply to understand a bit more of what we go through, because understanding for us goes a very long way. Every little bit helps and this episode certainly helped remind me my story is my own, but it’s sadly shared with so many.

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How I Found My Strength When I Needed Surgery for Crohn’s Disease

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We all have moments in our lives that are impactful, memorable, and challenge us to our core. I recently had one of those moments while attending a Tedx women’s event in St. Louis. The speakers were all phenomenal, but one in particular really struck a chord with me. Her name is Anne Grady. Anne’s teenage son has severe mental illness issues, and she’s a cancer survivor. To say she’s encountered her fair share of challenging days and trying times is an understatement.

I asked Anne what advice she would give to those battling chronic health conditions. She said, “Every day is another chance to practice. If you don’t get it right one day, give yourself permission to be human and try again the next.”

A few “mantras” that have helped her: “It is what it is, but it will become what you make it. All I can do is all I can do, and you got this!”

Anne’s presentation centered around an equation: courage + resilience = triumph. As she puts it, courage is the ability to do something that you know is difficult or dangerous. It’s the mental or moral strength to persevere and withstand danger, fear or difficulty. She went on to explain that resilience is the ability to recover from or adjust easily to misfortune or change. It’s our ability to get back up after we get knocked down.

Whether you live with a chronic illness like Crohn’s disease or not, we all experience some form of pain or discomfort through our lives. It’s the painful memories and trying times that really shape us into the person we are. Courage is not about the absence of fear or difficulty; it’s using the tough times as a catalyst to help us grow strong enough.

Anne also shared a great quote from motivational speaker Mary Anne Radmacher: “Courage doesn’t always roar — sometimes courage is the quiet voice at the end of the day saying I’ll try it again tomorrow.”

I love this quote because it speaks to so many of us who day after day battle chronic pain and the unknown.

It’s overwhelming when you have the stress of a chronic illness. That quote serves as a reminder that some days are going to be harder than others — and sometimes our spirit may break — but we always have the ability to bounce back and strive for feel-good days.

Speaking of bouncing back, Anne brought out one of her favorite childhood toys on stage — a bop bag — and explained how she’s come to appreciate that we’re all a little like a bop bag. When life knocks us down, we get back up.

Living with Crohn’s can be exhausting, disconcerting, scary and heartbreaking, but it’s important to try and find strength through your struggles.

When we make it through a difficult time, it’s called “post traumatic growth.” While we can’t see it at the time, we’re able to look back with perspective and learn from it.

When I was hospitalized and told I would need 18 inches of my intestine out in July 2015 — and the doctors sent me home for 10 days to build up my strength — I had never been more scared in my life. My fears of surgery, the countdown to returning back to the hospital and the unknown of whether the surgery would bring me the comfort I yearned for was overwhelming. But looking back, I wouldn’t change a thing. What was one of the hardest periods of my life ended up shaping me into a much stronger and healthier person.

It may seem easy to talk about courage and resilience during a calm time in your life. It may feel like it’s a whole different beast when you’re in the thick of the storm. The key is having gratitude for not only yourself but others, too.

As Anne said, “Oftentimes when I’m sad, frustrated or disappointed, it’s because my expectations and my reality are out of alignment. Most people are doing the best they can. People don’t wake up and think, ‘How many people can I disappoint and frustrate today.’ If you lifted the rooftops off all our homes, you would see we’re all dealing with something.”

When the going gets tough, try your best to recognize what is good in your life and give those around you the benefit of the doubt. It’s a powerful way to build resilience. The next time you’re faced with adversity, don’t run from it or let your emotions get out of control. Instead, think of it as an opportunity to practice resilience and courage to help you triumph.

Follow this journey on Lights Camera Crohn’s.

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