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What I Wish I Had Known Before Moving Abroad With a Chronic Illness

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Moving halfway around the globe can be a nerve-wracking experience for even the healthiest of individuals. It involves stepping outside of comfort zones, building new social networks, navigating foreign areas and communicating in a different language. For those of us with a chronic illness, however, the choice to move to another country can seem impossible. Moving abroad is a herculean task involving extensive planning to ensure that our bodies will be able to handle the stress of adjusting to a new environment with different emotional and physical triggers.

Before I accepted a job in Hong Kong, 8,000 miles separating me from my friends and family, I had to calculate the realistic possibly of managing my chronic illness in a country with a lower incidence rate of inflammatory bowel disease (IBD). While 238 people for every 100,000 have ulcerative colitis in the United States, it is estimated that only 26.5 people for every 100,000 have ulcerative colitis in Hong Kong. Although the prevalence of those affected by ulcerative colitis is lower in Hong Kong than in the United States, the incidence rate for new diagnosis continues to climb throughout Asia.

Even though I realized it would be challenging to manage my illness in Hong Kong, I thought I was well prepared to take up this new adventure. After all, the worst-case scenario would be hospitalization. “Being in remission for the past three years, the chances of that are extremely low,” I thought. A mere three weeks after I walked through immigration at the Hong Kong International Airport, this worst-case scenario transpired.

My immune system, already weakened under the immunosuppressive medications used to manage my ulcerative colitis, tanked under attack from an aggressive form of the Epstein-Barr virus. I spent 18 days hospitalized in Hong Kong with a 105-degree fever and supervised by a team of doctors consisting of an infectious disease specialist, internist and hematologist in Hong Kong and my gastroenterologist in St. Louis. When they had exhausted all treatments in Hong Kong, my doctors decided to medically transport me to a hospital in the United States. Although I ended up surviving my worst-case scenario, my treatment and recovery process would have gone smoother had I prepared more fully. If I could go back in time and redo the preparations I made for my move to Hong Kong, there are a few tips I wish I could have told myself.

For the first few weeks in Hong Kong, I focused mainly on practical chores such as finding an apartment and opening a bank account while postponing social engagements in the office. Due to my priorities at the time, I knew only a few people in my office and had not formed a strong enough relationship with other friends outside work. When I found myself alone in the hospital, I realized how isolated I truly was. There was no one I knew to bring me drinks, food or to sit with me to distract me from the pain I was constantly feeling.

If I could repeat these first few weeks in Hong Kong, the first piece of advice I would give myself would be to focus on building a support system. While it is important to sort out a permanent apartment, find the local grocery stores and adjust to normal life, it is equally important to seek out people on whom you can rely during times of crisis. This means going to lunch with as many coworkers as you can, spending weekends participating in meet ups or engaging in other group activities that you enjoy. As someone with a chronic illness, being part of a social group might become a vital component in combating any health crisis you might face.

During my 18-day stay in the Hong Kong hospital, I overheard many debates between my nurses and specialists about how to best handle my illness. Having dealt with only two cases of IBD, the nursing and medical staff were not just unsure of how my disease would be affected by the medications used to combat the symptoms of Epstein-Barr, but also doubted the effectiveness of the long-term treatment plan for my ulcerative colitis. They had never encountered an immunomodulation therapy involving 6-MP (mercaptopurine) that was used for long-term treatment outside of chemotherapy for leukemia. The debate over the correct treatment for me continued until I brought my IBD specialist from the US into the conversation. Eventually, with the teamwork from the local specialists and my home GI, they were able stabilize my condition.

If I could repeat the preparations for my move, the second piece of advice I would give myself would be to partner my home specialist with a local doctor to provide long-term and emergency care of my illness. Often, the specialist you have in your home country can recommend or research a colleague they might have practicing in another country. If you have found a doctor and treatment plan that works for you in your home country, it might be worth continuing to see that doctor every six months to preside over your long-term treatment. In my case, my company allows me two home leave trips per year to go back to the United States to see both my GI and primary care physician. Since these doctors cannot supervise over daily issues or respond quickly enough in the case of an emergency, it is important to find a doctor locally who will work with your home doctors to monitor your illness and conduct any necessary procedures.

My admission to the hospital is almost a complete blur, but I do remember handing over my credit card several times to pay for my room, meals and for any medicine administered to me. At that time, I was not concerned about the cost of the hospital stay. At discharge, I was given a dose of reality when I saw the final bill was $380,000 HKD ($49,000 USD). Luckily for me, my company has emergency insurance (International SOS) for all its employees overseas that greatly reduced the price of this bill.

If I could redo my move, the third piece of advice I would give myself would be to check all the details of my medical insurance policy, including what is considered in and out of network. Before I left, I should have gained a deeper understanding of which doctors and hospitals were covered under my US insurance policy, how to file international insurance claims and how the emergency international insurance policy worked. In my case, this insurance guaranteed payment for my hospital stay and my medical transport back to the US. When I was told I was to be admitted to the hospital, the nurse informed me I should bring in all the daily medication that I take. Some of these medications, especially the Lialda for my ulcerative colitis, do not exist in Hong Kong. Due to this, the hospital pharmacy had no choice but to dispense medication to me from my personal stash (with a dispensing fee attached, of course). While my final pharmacy bill was high, I was happy I had brought six months’ worth of my daily medications into Hong Kong.

If I could give a final piece of advice, I would remind myself of the importance of diligently managing medications. Before I left for Hong Kong, I spent hours on the phone with my doctors’ offices, prescription insurance customer service representatives and the local pharmacy to ensure I had at least six months of my medication to bring with me, as I knew Hong Kong did not allow my medications to be shipped to me from the US. This forward thinking attitude ensured I would continue my treatments, uninterrupted, until my next visit home.

This medication management took around four weeks in total from start to finish. The first step was researching the country formulary to see what medications were readily available in Hong Kong. Next, I asked each one of my doctors to write a prescription for a year’s worth of medications and called my insurance company to get an override for early refill. In my case, the early refill requirements were anything over three months’ worth of medications.

Once all of this was processed, I ordered my medicine for home delivery and waited for it to arrive. The final step for me was to request letters from each of my doctors that stated the medically necessary medicines I would be bringing into the country. This is not a necessary step, but I would recommend it in case customs officials are suspicious of the 180 mesalamine enemas you might have stored in your suitcase.

Although I would like to live a normal life, I often remind myself that living with a chronic illness means I should be more diligent than a healthy individual in preparing for any circumstances that might occur. It takes more work and patience to live this way, but I have learned that with a little research and a lot of preparation, tasks that seem like impossible fantasies, such as moving abroad with a chronic illness, slowly become probable realities.

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Thinkstock photo via YakobchukOlena.

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10 Things This Ulcerative Colitis Patient Wants You to Know

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Like any disease, every case of ulcerative colitis is different with each person. No one has the exact same symptoms, responses to treatments, side effects or outlooks on their health before and after diagnosis. What’s best for my treatment and maintenance can be a disaster for one of my friends dealing with his or her own UC. However, there are a handful of things that do seem to run similar between my network of inflammatory bowel disease buddies and myself. I won’t speak for everyone dealing with poopy issues, but there are 10 things I want the general public to know, which I’m sure a few of us can agree on.

1. I am not pooping every time we use the bathroom. Sometimes I just really have to pee. Inflammatory bowel disease does affect my urgency in both departments, but every bathroom trip isn’t for going number two.

2. Usually when I’m too tired to socialize, I’m really f*cking exhausted. Ever heard of the Spoon Theory? A woman with lupus created this to explain how, with an autoimmune disease, you run out of “energy” (spoons) much quicker than someone who does not have an autoimmune disease. I choose to divvy up my spoons to have enough to get a run in five or six days a week, because that keeps me healthy and happy. And unfortunately, I cannot always be the person who cranks out a run and still has a gut happy enough to go out afterward, or even later that week.

3. I get really, really bloated, and I’m self-conscious about it, so don’t point it out. At first glance, I may not appear to be noticeably bloated, and with today’s message being overwhelmingly to love your own body, I’m not supposed to even care. However, it is very noticeable at its worst, to the point where I could potentially pass for pregnant. And I do care – so when people close to me make comments on it, it bruises an ego that will be mending for the rest of its life. And yes, that has happened to some friends and myself.

4. I can still indulge in food. I’ve lost count of the times I’ve gotten a very concerning but can you eat that? look, and most of the time the answer is yes. I can still find ways to indulge and enjoy what I’m eating, and I’m by no means a squeaky clean eater.

5. Stress really can be a trigger. I carry stress in two places: my gut and my low back, but I would argue one affects the other. When life throws a curveball, my gut can react. So I’m not overreacting when I say that a situation can give me a painful stomachache. It’s a very real gut check for me.

6. Ulcerative colitis affects me emotionally. I’ve had this thing for more than half my life, but I still get crushed by it. Whether it’s feeling hopelessly linked to bathroom locations or insecure in social situations, living with something that can jump in a negative direction at any moment can weigh on you. I listened to an outstanding speech delivered by a mother of a son with inflammatory bowel disease, where she shared her angst in realizing her 10-year-old son was already experiencing lows that 10-year-olds should not feel. It’s a real thing.

7. I joke about it because it needs to be funny sometimes, but I don’t expect everyone to do that. I’ve always argued that acceptance of this type of autoimmune disease goes through the normal five steps of grief, with “acceptance” meaning that maybe you can actually joke about bodily functions. But that means everyone needs to experience the other four steps before they are ready to offer up poop riddles. I understand and respect that; I make jokes to hopefully show someone else that life can be OK  – even funny – even when you can’t get there yet.

8. I fart a lot. There’s no way around this one. My boyfriend and I have a joke that “It’s OK, it makes your tummy feel better.” He says that to me every time I still feel embarrassed about lighting up a room. I’m sometimes mortified, but I’m never sorry.

9. Dating with this disease is really hard. I’ve been in pain for the first six months of every major relationship. I hold the farts in, I wait until the most private possible moment to use the restroom, I push the food limits for the sake of not getting into it. It’s not exactly first-date conversation. Even though I’m fully comfortable discussing my condition with others, when you’re trying to establish a foundation with a brand-new person, talking about bodily functions isn’t on my list. I’m so lucky to have an amazing, caring boyfriend who survived that first half-year with me and still stands by my side, even when I’m in the fetal position on the floor.

10. You’re not alone. For all of those out there reading this, nodding their heads in agreement, adding 10 more things to this list that I missed, you’re not alone. I understand the pain, physical and emotional, and I get it. The back of the bathroom door can be a lonely view, but I promise I’ve shared that view, talked about that view and maybe even embraced that view as part of my beautiful life as an ulcerative colitis patient.

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Thinkstock photo via Pavels Sabelnikovs.

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Around a Hospital in 80 Days for the Ulcerative Colitis That Almost Killed Me

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Author’s note: The following contains graphic descriptions of bowel failure.

The thing about major medical issues is they don’t always set in suddenly with a dramatic collapse or an important body part waving a sign that says “I am broken.” Often it starts small, subtle, slowly escalating below your radar until horrified loved ones take you to the ER and you realize you’re the proverbial frog in the boiling water.

Back in September 2015, I was doing pretty well. I was overweight but always had been. I had a daily schedule, a volunteer job I loved and was taking care of friends and family. I was happy.

Then the bleeding started. Slight traces of crimson in my bowel movements at first, then bloody diarrhea. At first I blamed a medication I was on and went to the doctor, who agreed and took me off it. It didn’t help, so they sent me to a gastroenterologist. He wanted to do a colonoscopy and scheduled me for one in three weeks. I went home.

And I continued to deteriorate. I ran to the bathroom more and more frequently. I grew weaker and paler. I lost bowel control. Fortunately for me, I live with family who can step up and help me out if I can’t always take care of them. So finally, when I reached a point where I was sleeping in half-hour segments on a couch covered in garbage bags, they convinced me to go to the ER.

What I remember most about the ER is the tiny little 19-inch CRT TV on the wall next to the door. I stared at that thing for hours, watching “Pawn Stars,” and as the night progressed, some yelling guy trying to sell a set of like 900 kitchen knives for $40, and finally, as late night became early morning, a show on Cartoon Network called “Wabbit” about Bugs Bunny and the other Looney Tunes. It wasn’t bad, but honestly, WB needs to realize what made the original shorts so great is a mixture of the irreproducible genius of folks like Chuck Jones and Mel Blanc and the ability in the time to be what is so politically incorrect now that lawyers would move to California from other continents just to sue them. Those shorts weren’t made for kids, and I think what’s made now is.

What’s also not made for kids is ulcerative colitis, though far too many of them get it. That’s what I’d eventually be diagnosed with, as the doctors decided to admit me based on the amount of blood I’d lost and my tendency to be white as a ghost and fall over when I tried to walk, like some sort of post-Super-Bowl-victory Casper. I was there for two weeks and was stabilized by blood transfusions and IV fluids. For the first time, I was in a place I literally could not walk out of.

Ulcerative colitis is pretty much what is sounds like: your colon becomes inflamed and ulcerated. It’s painful. It’s misery. It can be fatal.

I got my first taste of hospital food, which is famously terrible. If you’ve read my bio, you know I’m a vegetarian, and I was worried about not only getting fed terrible food but getting fed terrible food with gravy on it. (If you like gravy, more power to you. Quaff all you like. It’s just not my thing.) When the food services worker came to take my order, I was shocked. She gave me some options, and then handed me a menu. I was floored (not literally, that came later). I saw food I wanted, I ordered it, and it was actually good. That was important because as I would soon learn, my hearty appetite was all that was keeping me alive.

I was discharged, still weak, sick, hurting, and incontinent, on November 12. I had to buy adult diapers.

Now, I always had a particular view of adult diapers. It’s probably the same as yours, which is something like gah! But, if you’re going to have to wear adult diapers (something I do not recommend outside of certain sexual practices, to each their own), the industry has come a long way from being huge and bulky. They’re not terribly expensive and can give you a touch of freedom. You’re better off not needing them, but if you do, it’s better to have them. I still have a package at the foot of my bed a year later because once you lose confidence in your bowel control, it takes a long, long time to really get it back.

I spent the next two weeks between the bathroom and the closest bed. It wasn’t easy, and I kept bleeding and getting worse, slipping away a little more with each bowel movement. I had a quiet Thanksgiving with my family — the first I couldn’t cook for since I’d become an adult, but the next day, I collapsed. Then came my first ride in an ambulance.

This hospital stay was different. The doctors were more concerned because they hate it when you die on them. It’s a real pet peeve, a kind of professional taboo for some reason — just ask any doctor. Fortunately, my gastroenterologist practiced in the hospital I was taken to, so he came to check on me and work with me. He finally got the colonoscopy he wanted. The diagnosis was ulcerative colitis (UC), I was put on powerful steroids with the promise of other medication to follow once I was stabilized. I received two more blood transfusions because I was bleeding out, slowly. And I was malnourished: my sick, weak body couldn’t absorb nutrients from the food I ate.

The thing about colonoscopies is they suck big time. You have to spend hours drinking a huge jug of laxatives and flushing yourself out (as if my digestive system wasn’t doing that well enough on its own, I was going through underwear like tissues), then they knock you out for the procedure because gah. The drug they used for that was Propofol. In my case it was administered (by IV, via a syringe so comically huge that I initially mistook the anesthesiologist for a livestock veterinarian) by someone competent who cared whether I lived or died, so I was only out for two hours with no ill effects.

Once more I was sent home, in early December. I was given drugs to slow my bowel, and my gastro doctor put me on a medication to control and heal the UC: Remicade. I had to go to the hospital on a schedule for the infusions.

By this point I was walking, slowly, with a cane and a backpack full of Emergency Diapers. I learned to always stay near a bathroom, and when that wasn’t close enough, how to change myself in a public toilet without leaving my dignity behind. (Pro tip: wear slipper shoes with no laces.) For the most part, though, I was too sick and weak to go much of anywhere. My life had become a waiting game. Would the illness prevail before the treatment could work?

I spent three months in diapers, agonizing over what was happening to me, getting slowly but steadily weaker. It was becoming abundantly clear that the Remicade was not working. I was still in diapers, still sick and miserable. My gastro doc began to talk more and more about surgery. He sent me to a specialist at Vanderbilt for a second opinion.

I made several trips to Nashville. Medications were tried. Tests were performed. More waiting. It was finally decided a colectomy was my only option. That was a major blow. How could I be this terribly ill? What was happening to me? I had to lose a part of myself. Sure, it was killing me, but I still had to struggle to face it. Colons are very important and not just in grammar.

Meanwhile, I continued to deteriorate. By June, I was barely ambulatory. One night, I got up to use the bathroom, and the next thing I knew I was lying on my back looking at the ceiling. I got into a debate with my family over how sick I was, which is hard to win when you’re laid out on the floor. I limped and shuffled out to my brother’s car and went back to the hospital.

More colonoscopies. More IV fluids. More blood. Once more, I was stabilized and sent home. But this didn’t last. I fell again my first night back. And this time, I couldn’t get back up.

The paramedics had to pick me up from the floor and bring the gurney down the hall to get me to the ambulance. Back to the ER yet again. More tests, more waiting, more pain, more fear. I was admitted for the third time in six months, and I was expecting another two-week stay. But this time was different. This time was far, far more serious.

I remember sitting alone in my room. It was late afternoon, and shafts of sunlight played across the wall. I was scared, miserable, and crying. The nurse came in and paused, regarding me. My heart skipped a beat. What now? Kidney failure?

“Your shirt,” he said.

“What?” I was confused.

“Your shirt. It’s on backwards. I see the pocket on your back.”

I look down at my collar. I see the tag.

“Well, f***.”

The next two weeks were a blur of doctor visits, phlebotomists, and medical tests. I was sicker, weaker. I had an opportunistic C. diff infection. That alone can kill people. Nurses and doctors had to suit up to come into my room. I was dying, slowly. My GI surgeon made the decision to remove my bowel and install an ileostomy.

An ileostomy, for those who do not know, is similar to a colostomy. Where with a colostomy, the large intestine is diverted out the abdomen to bypass a diseased or otherwise nonfunctional or missing section of bowel, the ileostomy diverts the small intestine out the abdomen. The protruding intestine is called a “stoma,” and a bag is glued over it to catch the waste.

The surgeon ordered a precautionary CT scan before the operation, purely on a hunch. What it found stunned everyone: I was riddled with blood clots in my lungs and a massive one running from my kidney to my heart. It was one of the biggest clots they’d ever seen. If they had opened me up without knowing it was there, I would have died instantly. As it was, I was days away from death.

An emergency surgery was scheduled for July 11. It was June 29. The surgery would be in two phases: First, the heart surgeon would remove the big clot. Then, the GI surgeon would install the ileostomy, leaving in my large intestine because my body couldn’t take any more trauma. I’d be opened from collarbone to pelvis.

In the meantime I was put on high doses of IV blood thinner, with samples of blood to be taken every two hours to make sure it was working right. Pretty soon the phlebotomists were having to milk my fingertips and dig for veins with needles because my arms were so riddled with track marks that my veins wouldn’t rise anymore.

Every two hours, day or night.

The day of the surgery came, and the last thing I remember was having my abdomen shaved. I came to nearly a week later. No one knew if I would. Few knew what was going on. I remember feeling so weak and tired, and an alarm kept going off. Whenever it did, a voice told me to breathe. I had to breathe. I’d draw a deep breath, and the alarm would shut up. Then I’d relax, and it would go off again. Repeat.

Eventually I got to where I could breathe and got my bearings. I was in the cardiac ICU. The surgeon came in and explained what had been done: on the first day, they had stopped my heart and supercooled my body, using a machine to circulate my blood. The clot was removed, and they left me open overnight. The next day, the ileostomy was installed. Then they closed me up and hoped for the best. The doctors kept me in a coma for four days while my body recovered. I spent over 12 hours clinically dead. “Ninety-nine percent of people would not have survived this,” the doctor said. He seemed impressed. I was stunned.

I could barely move my arms and head. I couldn’t move my legs at all. My voice was a hoarse whisper and gave out easily. But I was alive. Now to recover.

The next few weeks were painfully slow. I wanted to get better. I wanted my life back and was fighting as hard as I could for it. But despite what my family would say whenever they saw me, I didn’t feel like I was getting anywhere.

But I was. After moving to the cardiothoracic ward and from there to the general floor, the doctors decided I was ready for discharge to a rehab hospital.

For me, the rehab hospital was where things really started to turn a corner. Physical therapists came every day. I worked with them. They gave me bed exercises. If they asked me to do 10 of something, I did 20. I did them after every meal. I kept dumbbells by my bed and wore ankle weights to help rebuild my muscles. I made a vow: I would walk out of that hospital under my own power by my birthday on August 29. It was August 14. I had a lot of work to do.

I started sitting in my wheelchair whenever possible. Then I started taking it for laps around the floor, using my hands and legs to propel me. Then I was able to stand and use a walker. Then I was able to shuffle about on my own. I walked into the bathroom and looked in the mirror for the first time in months. A man I barely recognized looked back at me. I had shed nearly 100 pounds.

On August 24 I was discharged, and I walked out the doors on my own. For the next several months, I recovered and convalesced at home. I slept on a modified bed made tall enough for me to get in and out of easily. I endured the constant pain of my inflamed bowel. Narcotics and cannabis only provided partial relief for short periods. It was a waiting game again — endure the pain until my next surgery, scheduled for February 3, 2017.

This surgery was different. I awoke in agony. I got morphine every few hours, and it still was not enough. I was discharged after three days — the doctors fearing an opportunistic infection. Back to the bed. Narcotics every four hours. I was in so much pain I nearly fainted when I had to sit myself up and stand to go empty my bag.

The pain was different. It was sharper, more intense, but I knew it would pass soon, unlike the constant burning ache of my bowel. After a couple of weeks, the pain eased. Soon, I was in no pain whatsoever. My surgical wound was healing. My sick bowels were gone. (As the surgeon put it, “I have never seen a colon more ready for removal.”) I could finally start taking my life back. And I did, slowly.

I’m not the same. Facing death, and severe trials, changes you. I have post-traumatic stress disorder. I have scars and more to come. I void my waste into a bag that can and does leak. My mental illness is back out of control. But I’m alive. I can heal. I can get better, as better as medicine and my body allows. It just takes time.

I still have a long way to go. Two more surgeries, to rig up what’s called a “J-pouch,” which allows my small intestine to work as a rectum, and then a final surgery to remove the ileostomy. Then I’m as good as I’m going to get, and that’s good enough.

This post was originally published Sneer Campaign.

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Flying From Grief to Grace When My Ileostomy Became Permanent

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Less than 24 hours before I’m in the operating room.

After seven years of ups and downs with ulcerative colitis, my story is finally coming to an end.

I had hoped after the last surgery that my ileostomy would be reversed and I would be able to be “normal” again, but unfortunately my body had other plans.

My ileostomy is here to stay.

I was deflated when I found out. Mostly because my expectations and my reality were clashing…

I flew rapidly through the stages of grief.

And slowly, I’m coming to Acceptance. “It is what it is.”

The truth is that my ileostomy has given me more than it’s ever taken away.

Prior to my ileostomy I was so sick. I was on a multitude of medications — from pills to monthly infusions. I couldn’t even take a walk around my neighborhood most days without succumbing to excruciating pain and embarrassing accidents. Most of my communication with my family was had between the door of the bathroom — them on outside and me on the inside. It was miserable.

When the toxic colon was removed from my body I healed tremendously fast. I always joked that my body was just “ready” after so many years of torture. An anticipated five-day hospital stay turned into three, and an anticipated six to eight week recovery turned into two.

Sure, I’ve had some embarrassing moments… the moments when the bowel bag wants to leak… you know, on a new date, at a party, shopping, while I’m sleeping, in a meeting at work.

Luckily, I have a morbid sense of humor and an uncanny ability to laugh at myself. My humor is a survival tactic I developed during my brutal journey.

But guess what I can do with an ileostomy?

Anything you can do without one.

And that’s a much better situation than the one I was living in with ulcerative colitis.

So I’ll just wear my bag, until death do us part, with gratitude and grace.

Some things in life just don’t make sense. But we always have the choice to embrace it and make the best out of it. Scars are proof you survived. They are marks of strength, resilience, and perseverance. Release any doubt. Wear them with pride.

If you’re struggling with something, regardless of the circumstances, I challenge you to rethink your situation. Look at it from a positive perspective. Seek a way to grow from it, to change, to use it to impact someone else who is struggling. It doesn’t matter what it is… we all have unique struggles that we overcome… let it be your testimony.

Follow this journey on One Flawsome Momma.

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How Running Marathons Has Helped Me Through Ulcerative Colitis

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I have to admit – when the Crohn’s & Colitis Foundation asked if I wanted to speak at this year’s Team Challenge inspirational party the night before a major goal race of mine, my first thought was: What if I have to poop in the middle of my speech? At least I was in a room full of people who could probably point me in the right direction.

I was diagnosed with ulcerative colitis when I was 14 years old. It happened like it does for so many of us. So much diarrhea and blood, cramps, exhaustion – the list goes on. I don’t remember the exact sequence of events, but my mom says when my pediatrician heard the severity of what was going on, she walked over to the gastroenterologist and urged him to see me as soon as possible. One sigmoidoscopy and colonoscopy later, the verdict was in: I had ulcerative colitis.

We were able to get it under control almost immediately, so I was fortunate to have a pretty normal high school life. I ran cross country and track, I went to the bathroom a regular amount and really no one knew I had inflammatory bowel disease. I graduated as a four-year varsity athlete with a handful of cross-country course records, one state meet berth, healthy as an ox and ready to tackle the next adventure: college.

In 2005, I moved into the dorms at UC Santa Barbara, and like any good student, I had a total blast my first year. I felt great – so great, in fact, that I started to skip my medication. Since I experienced zero symptoms in high school and didn’t understand anything beyond just having to take some random pills, I thought, What the hell? Yeah – big oops.

Summer 2006 came way too fast, and I started experiencing some familiar symptoms – diarrhea, cramping, fatigue and blood. Within a matter of days, I was in bed, then in bed some more, then not eating, then going to the bathroom more than 40 times a day, then trying not to vomit and poop at the same time, then watching reruns of CSI Las Vegas. (My mom still jokes to this day that Gil Grissom saved my life that summer.) I was in my very first post-diagnosis flare. I was 19 years old and learned quickly that this disease is not a joke. It’s here to stay, and I need to listen.

I tried a few different things to get better as I struggled through the summer and headed back to school, including the dreaded steroid route for close to a year. There were times when I felt like I would literally never eat anything again other than Saltines and Ensure. There were times when my parents probably thought the same thing. For those of you who have been there, I totally get it. The helplessness, the fear, the anger, the confusion. That was me at 19, at a low weight and waking up just to roll over and go back to sleep.

After two quarters back at UCSB and dealing with a flaring gut and the emotional toll of accidents in public places mixed with peers who weren’t understanding of what was happening to me, I made the choice to skip my last quarter that year to get better at home.

During this time, I obviously was not running. I was barely going outside. The first time I did leave the house before heading back to school, my boyfriend at the time drove me to the beach. As we slowly moved down the ramp toward the bathrooms, I told myself, Just make it to the water and back. This goal meant being more than a few steps from a toilet, something I hadn’t done all summer. I was petrified. I remember feeling the cool, fresh air on my face and shuffling my fragile frame with his assistance. I was so freaking winded – it feels ridiculous looking back now! – but I remember I was determined to get my feet wet. I don’t recall how long we stood down there or how long I spent in the bathrooms afterward, but I still remember that fresh air…that same fresh air I feel when I go for my daily run today.

I like to say that Team Challenge, the endurance training and fundraising program for Crohn’s and ulcerative colitis research, saved my runner life – but really it saved my whole life. By September 2007, we had found a treatment that worked for me, and I’m grateful that it’s still working for me 10 years later. I found out about the program at a foundation symposium when I was desperate for answers about my own body. They were participating in their first national event– the wine country half in Napa in July 2008. I was still in college, and I had never run a half marathon before. I trained remotely and met up with the rest of the San Diego team on race weekend. I was immediately adopted by a group of girls who still remain some of my closest friends today. And let me add that I had just turned 21 a few months earlier, so having your first Team Challenge event in wine country wasn’t so bad!

woman running a half marathon

There’s nothing quite like completing your very first race – especially if you’re wearing those honored heroes on your back and that orange Team Challenge logo on the front. From the second I crossed that first finish line in Napa to now, I knew one of my purposes in life would be to show people that you can thrive – not just survive, but thrive – with this disease.

For me, that means exploring what running means to me as an adult with UC. For me, that meant going back to school for a summer session to graduate on time with my friends.

For me, that meant training to qualify for the Boston Marathon at my marathon and accepting my symptoms not as setbacks, but as reasons to keep moving forward. I qualified in 2015, and crossing that finish line in Boston last April meant that no dreams are too big and no steps are too small to get there.

For me, as I crossed the finish line of my seventh race with Team Challenge last month, that meant respecting my body’s limits but not being afraid to test them. I ran for a personal best, and I achieved it by three minutes!

Wherever you are with your own inflammatory bowel disease, you are so not alone in your steps toward your goals, and we all know remission does not equal cured. Just getting out of bed is still a step some days, while other days it might be walking to the end of the driveway and back. That’s how I started anyway. These seemingly small things are steps toward your tomorrow – a day that, 10 years ago, I learned always comes.

My story is my story, but it’s also the story of so many I know who are also fighting the fight against their own body.

It’s the story of the son who’s been battling Crohn’s since he was a kid and is now an active advocate for the cause at just 14 years old.

It’s the story of my big bro’s wife who has been in and out of the hospital and still can’t wait to get back on her bike. (She makes us all look bad!)

It’s the story of the daughter who can’t attend family trips because she’s too sick, so her mom comes out to walk in honor of her.

It’s the story of two guys, one diagnosed years ago and one recently, who still came out to talk IBD nerdy with me on our training runs.

It’s the story of the daughter who has literally made it her job to end this thing, working full-time for the foundation, sometimes from her hospital bed, and this year I was so lucky to call her mom my teammate.

woman with her boyfriend and friend at the beginning of a half marathon

I ran for many as I covered the 13.1-mile journey at Rock ‘n’ Roll New Orleans, but the one at the top of the list is myself – to celebrate that moment two months ago, following a colonoscopy, when my gastroenterologist said, “Everything came back clear.”

Every time I choose to throw the middle finger at IBD, I hope one more person with inflammatory bowel disease thinks, Yes, it is possible.

Because yes, it is always possible.

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8 Positive Things I've Learned After One Year With Ulcerative Colitis

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As I reflect on my first year dealing with ulcerative colitis, I look at all the good and bad experiences I’ve had. Most of the time, while you go through a bad time in your life, you can hardly picture that something positive might come out of this. As the memories of last year are brought back to my head, I can now see every little positive thing I have gained this year. One year ago, my 15-year-old self couldn’t have even thought about something good coming out of this. I thought my life was about to be painful and hard, even though I was glad I could put a name on my symptoms. Today, to celebrate my first year coping with IBD, I want to share with you some of the positive things I have learned.

1. I’ve learned enjoy every little moment in life.

When you are perfectly healthy, it’s easy to take your health for granted. I myself never thought in a million years I would get this sick in high school. But when it happened, I immediately told myself that, when I got my health back to normal (well, a new normal considering the UC), I would never miss an opportunity to have fun and enjoy life. I would try to enjoy every minute of my days, and teach those around me to do the same, because most of them are perfectly healthy.

2. I’ve matured a lot.

I’ve had to grow up fast. And by fast, I mean racecar fast. I now need to watch what I eat, go to the hospital at least once a month, make decisions about what pills I think would be best for me and many more. I also need to take care of myself on a daily basis so I don’t run out of energy. It is hard sometimes, because you want to go do normal teenage stuff with your friends. But you simply can’t. Most people don’t have to do such things at 15. But you know what? Life happens. And it’s not because I’m young that I can’t be sick. It doesn’t always happen to others. It sometimes happens to you. And knowing that is the most difficult thing to process.

3. I’ve learned to manage my stress.

Before I got sick, I had a lot of anxiety. But I noticed that from the day I got diagnosed, my stress level lowered a lot! I personally think I just now had realized that stress made my symptoms worse. And because I didn’t want to have cramps 24/7, I unconsciously stopped worrying about every single thing in my life and just let life go on as it always should have.

4. I’ve learned that I’m strong.

Before I was diagnosed, the worst medical thing I had ever had to get done is a shot or two. And even though shots are really not that bad, I was always afraid to get them. So you can imagine that when I had to do my first blood test, I was petrified. And the fear didn’t stop there. About four days after that blood test, I had to get a colonoscopy, which was way worse. But that was the first and last blood test I was scared of. Twelve blood tests, three iron infusions, one colonoscopy and a year later, I can now proudly say that I feel very brave. Not only on the physical side, but on the mental side, too. I became much more calm and I don’t let my thoughts scare me as much anymore.

5. I’ve learned not to worry about others’ opinions.

Yes, people are going to think you are lying. They often think that when you can’t see someone’s illness, it’s fake. But when you see so many faces judging you and thinking you’re fake, you learnt not to care about what people think anymore. Whether they say that you could’ve done something to prevent the disease (which is totally untrue) or they think they can cure you with their magic wand, don’t listen to them, they’re not worth it.

6. I’ve learned who my real friends are.

You may lose friends. Most people don’t know how to deal with a sick friend. Especially not when you’re a teenager. My best tip would be to let go of these people. If you don’t, they might disappoint you on the long run. Concentrate your energy on building strong relationships with people who really want to be part of your life. They are the ones who are worth it. You don’t need to have a ton of friends, just a couple good ones will do. Trust me.

7. I’ve learned to be more positive.

I early on decided to have a positive attitude towards my UC. I find it a lot easier to fight this disease with a smile on my face rather than lay down and cry. Of course I can’t be positive all the time. Sometimes I do lay down and cry and just want to find a reason to the “why me” question. But because there really isn’t a reason why, I just figured that I would have a better life if I started to have a positive attitude early on.

8. I’ve learned to listen to my body.

Most importantly, I can now “read” my body. I know that some days, I have a little less energy than other days. And I know what to do on those days. I see the difference between a UC cramp and any other cramps that my body experiences. I never could have done that a year ago and find it very cool that I now know my body very well.

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Thinkstock photo by BalazsKovacs

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