Patient Turmoil: Trusting the Health Care System

Those that live with a chronic disease are often credited with surviving through symptoms, side effects of medications, and other health issues that come along with their illness. However, people rarely think of the stress that comes along with gaining the healthcare necessary to treat their disease and live a relatively normal life.

Many systems interact in a patient's treatment - the health care team who helps determine the best way to manage a disease, the pharmacy to fill prescriptions, and the insurance who will supposedly make all of this affordable. Even if a patient stays with the same businesses, this can get incredibly complicated if anything changes within these businesses or in the person's life.

In the past two weeks, I intimately learned the danger of systems that do not share information and may not always communicate enough to truly benefit the patient. Although I thought everything remained the same, several small changes almost necessitated hospitalization and brought forth the prospect of surgery.

Two weeks ago, I told Walgreens to refill my prescription for Ustekinumab as I always do prior to my injections (completed once every eight weeks). This started the beginning of my realization over the stress that comes from needing to trust that everyone in your team will do what's right. First, the pharmacy sent my prescription to the wrong pharmacy, but a phone call two days later fixed that. With my normal time-frame, this would not have been a problem. Three days passed; normally it takes two or less to fill my prescription through their specialty pharmacy. My husband and I spent over an hour on the phone on a Saturday to determine what was happening with my prescription.

By the end of our phone calls, we had no idea who had been paying for my medication for the last 9 months. The nurse on call at my new clinic said they could only help if my symptoms worsened to the point of needing hospitalization.

One week after I started the process, I had five days left to receive my prescription on time. I started again calling the pharmacy to determine why my prescription was rejected and asking the physician who wrote the script to talk with the insurance. At that point, we learned the insurance company required another prior authorization, although never told me I would need another so soon. We figured it could not take long since the insurance approved it at the beginning of the year. However, I learned the clinic was working with an insurance I told them to take off file in January. 

Throughout the rest of the week, my husband and I spent many hours on the phone trying to figure out what blocked me from receiving the treatment that has been the only medication to ever bring me into remission. From the clinic using my maiden name, to the pharmacy using my wrong insurance, to the insurance company saying they would pay for $1500 and leave the other $21,000 for me to pay, I thought my only option would be going to the hospital and potentially needing surgery depending on how bad my disease would become in the process.

Through all of this, I could tell certain people in each system were tired of my micromanagement. However, seeing all the mistakes made by each establishment, I no longer trusted that anyone knew what I needed or how to help me get what I needed. Every time I learned of a new mistake, my stress levels skyrocketed because I needed to contact the other systems to make sure they were not impacted by that mistake.

Thankfully, I found one person in each business who became my trusted advocate. I would only speak to that person and they kept me updated on their progress and dealt with my situation personally. They understood my distrust of the system and left messages while I attended class so I knew my situation was being handled appropriately. Without these people, I cannot imagine how my symptoms would have continued to progress and where I would even be today.

This situation exceptionally highlighted to me the trust that the health care system imposes on patients. Without a way to truly connect clinic, pharmacy, and insurance, and without a way for the patient to easily check on updates, the patient is at the mercy of people who are not personally connected to their case and may make small mistakes that have immeasurable consequences. Unfortunately, I see none of this changing until someone in power needs to deal with a situation similar to this, or until healthy people become cognizant of the constant struggles of those of us living with a chronic disease.

Until then, I implore those in any part of health care to have patience. Try to understand the constant worry and stress we have in trying to treat our disease. If we make a mistake or forget to tell you something, please remember that we have to work with everyone in our team which can include many places we need to update with insurance, medication, or personal changes. Beyond all of that, we are trying to lead normal lives while managing a chronic disease which probably causes daily strife that we must overcome. After a fight with one of my past physicians, he told me something I will never forget - he must try to remember that when he sees me, it's a normal workday for him; when I see him, I may be experiencing one of my worst days due to sickness. You may be stressed during your workday, but imagine needed to live with this every day and needing to interact with this health care system while trying to stay healthy.

Healthcare System: The Added Woes to Patients

After 13 years of dealing with a chronic illnesses, what surprises me most is that I'm still surprised at how the healthcare system manages (or doesn't manage) patients. With a year of medical school stuffed into my brain and a summer filled with strange, new symptoms, I find myself marveling over how our society deals with someone with a chronic disease.

First off, I have so much respect for people who enter healthcare for the right reasons and truly devote themselves to helping others. If you are one of those people, please know you have my deepest gratitude; you make more of a difference than you can possibly know.

For those whose job is purely a job, I only ask for more patience and perhaps a touch of empathy. For some employees, dealing with patients is an 8-5 weekday job with vacation and holidays. 

I don't receive a break from my disease. It is with me 24/7 regardless of my plans or vacations. My illness does not slow down when I have an exam coming up nor does it clock out when I travel. When I call, even if my issues deal more with quality of life, I really do need help. I am not trying to make your day harder. When I become frustrated on the phone, do not think that I enjoy the conversation any more than you do.

We say that our system tries to focus more on the needs of the patient, but this entirely depends on the clinic and individual healthcare professional. I know people may scoff and wonder what the big deal is. However, when trying to stretch every dollar and having an insurance that will only cover one specialist appointment each year, that one appointment means more than you can imagine. If you use your one appointment on a physician who has different beliefs on symptoms a patient should deal with, then that's it. No do-overs and you have another year of very uncomfortable and painful symptoms until you can try out another physician and hope that this year will not also be a waste.

As a patient, I find how different physicians code appointments for billing fascinating. I know doctors who bill for everything regardless of what the insurance will cover. Other physicians learn what insurances will cover and if it is something small, will not write down a small portion of the exam in order to save their patients some money. When I keep calling about symptoms and seeing if I can put off an appointment, I'm not trying to make your life difficult. I don't have endless income to afford several appointments and tests. Treating me as though I'm looking for free healthcare only makes me feel guilty about being sick.

What astounds me most during this time, is that physicians still exist who believe they have the right to tell patients to just deal with symptoms. After my fortune of dealing with several amazing healthcare professionals, I cannot stand a doctor who thinks they know more about my disease, my life, and how those two interact. I lived with this illness and my symptoms for much longer than any professional has learned about the disease in general, with much less time to learn about my particular illness.

In this past year, I learned that much more reform is necessary for patients to truly receive the care that we deserve as human beings. We are not cases from a textbook. We are not idiotic people who know nothing about our disease. We are more than a job.

The Power of One Doctor

As I make my way through medical school, I naturally look back to my own experiences. Due to recent health circumstances, I realize the immense impact of a single physician on a person's outlook on the medical profession and on their health.

In my own experience, three types of physicians exist. The ones who help you thrive, the ones you forget about, and the ones who make you worry every time you come into contact with the medical community.

My first GI doctor was the first. She challenged me to take control of my disease and to advocate for myself. During the two weeks following my diagnosis, she called me over her lunch break as the "poop patrol" to ask about my bowel movements (color, consistency, etc.), my symptoms, and what I ate. She then asked me to piece together as to how my lifestyle could affect my symptoms. Although I was 10, she forced me to quickly mature and to learn to listen to my body. Every appointment, she told me the same thing, and I will always remember it.

Although she was the one with the medical degree, she could never understand my personal disease. She told me she could only help me as much as I helped her to know what was going on in my body. No test or person could tell me what I was feeling or about the state of my health.

Every appointment she asked about my thoughts about my disease. She asked about my symptoms and what I wanted done. It didn't matter what the tests showed; she said they were a piece of the puzzle, but no where near as important as how I felt.

This physician taught me to trust in myself and my body. She taught me to understand what my body told me and how to figure out what triggered symptoms and how to try to avoid those triggers.

For several years, I had a doctor who was the last of the three described types. When I came to him, I was experiencing the most intense symptoms of my life. After going through clinical studies and finally having 25 centimeters of my intestines removed, we thought I was in the clear for awhile.

However, within a few months, symptoms reappeared in full force. My physician never thought much of my worries. It was only through determined insistence that he would alter medications. When one medicine gave me full-body, medicinally-induced psoriasis, his only response was that he hoped I could handle it and gave me a prescription for anti-itch cream.

I took it upon myself to fix my disease. My physician was no longer a team player, so I educated myself as best I could. I attended conferences, spoke with doctors from around the country, and ended up learning about many different alternative medicines. I saved myself with the help of many other medical professionals, but not with that doctor's help.

About a year later, symptoms picked up and I spoke about my worries every appointment (I was on a clinical study and had monthly appointments/injections). After nine months of begging for something to be done, my physician finally said he would do something. At that point, however, any trust we had was gone. During those nine months, he told me my symptoms weren't that bad and he thought I could live with them. He thought that maybe they were in my head and several times suggested a consult with pain management because he thought my body was trained to always think I was in pain. With him as my physician, I constantly doubted myself and my body. I would leave for my drive back to school crying because I didn't know if my doctor was a jerk or if I had a psychological problem.

I switched to a new physician at the clinic who looked at my records and couldn't believe how long this had been going on. Two tests later, and we found a treatment. Those nine months didn't have to occur and none of it was in my head, but it continues to affect my healthcare.

Now, when I feel ill, the first thing I tell my fiance when he says I should call my doctor is my worry that the doctor won't believe me. I don't want the physician to think I make up stories for attention. All of the work my first physician put into me to trust my body and my symptoms was washed away by one physician who couldn't be bothered to take the time to really listen to me. Rather than talk to the physician when I'm sick, I take it upon myself to try to lessen my symptoms because I don't believe a GI will help me.

I hope patients don't allow one physician to compromise their health. We need to advocate for ourselves and I learned my lesson about getting a new physician as soon as the relationship turns sour.

For future physicians, I hope you learn the humility of realizing the patient knows more about their disease than you ever could. I hope you take the time to really listen to your patients and to help them thrive.

The relationship between a patient and physician is so critical to a patient's entire well-being. I hope that future changes in the culture of medical care allows for patient experiences to matter and to inform the doctor just as much, if not more, than the actual tests.

Learning to Say No: How I manage medical school with an autoimmune disease

Let's be honest. Most people accepted to medical school are over-achievers. Not only academically inclined, they tend to be over-involved in volunteer work, leadership positions and often have TA'ed for a pre-med course or two. Pre-med students are the first to volunteer and the last to leave.

Once I found my footing in college, I became that student. I worked 15 hours a week, volunteered 10+ hours a week, worked on independent projects and carved a name for myself among the faculty. Naively, I thought medical school would be the same. Through strict lifestyle choices, I would continue to excel in every aspect while still enjoying life.

When classes began in August, I thought for sure I would be enjoying a full plate of activities by mid-September. However, tragedy struck my family at the end of August and I needed to deal with the grief of losing my brother.

As the semester continued, I kept wondering where my time went. If I was going to continue to be active in extra-curriculars, I needed to find the time to participate. After each block of exams, I told myself I would find the time in the next block. However, each exam brought on a mini-flare and I would take time afterwards to relax and bring my body back to a healthy state.

Professors and physicians continuously tell me they hope I can overcome the challenge of having a chronic disease during medical school. I didn't understand that until recently. Although I want to be heavily involved in other activities other than academics, I need realistic expectations about what my body will allow me to do. The most important part of being a doctor is learning the information that will allow me to help my patients. My experience with Crohn's disease already taught me more than any person can about interactions with patients. Right now, I need to focus on staying healthy, and doing the best I can academically.

As much as I hate to admit it, I need to say no to many more things than I can say yes to. Thankfully, I found my way into working with the CCFA on projects and another student excited to start a young adult support group. This way, I can be involved with helping others, while still finding the support I need to overcome my disease.

In a disease that is so dependent on low stress levels, I've learned to truly plan my time and understand my capabilities. Although I'm not as involved as many of my classmates outside of school activities, I have as much on my plate as my body can handle. And I'm okay with that.

Once, I thought I would be spending these four years taking Madison by storm. Now, I'm excited to continue to learn about the human body and how to make it well, along with continuing to fight for my own health. I will survive and I will become the best physician I possibly can.

Status: Lab Rat

I have learned many disturbing things about our medical system as a lab rat.

Currently, I'm on my second clinical study; when no other options exist, clinical trials can feel like a godsend, especially if the medication works.

No one tells you what it's like to be on a study when you need more help than purely receiving the drug. After finishing my undergraduate career, I will move to another state. Months ago, I asked the nurse on the clinical study about switching to a closer clinic. Her original response was that it wasn't possible. Thankfully, my boyfriend said that you can usually transition and I pushed. Finally, she gave me a website and told me I needed to look up whether the clinical study was offered near my medical school. I was flabbergasted. As a health care professional, was it not her job to help me? I called a nurse I trust, and she helped me locate other sites.

The clinical study nurse then checked into that site and told me I was unable to participate in a clinical study there. She said I could continue going to the same clinic I've attended - four hours away from my medical school. For monthly visits in which I would need to miss class, this option seemed unacceptable. She said I could call the insurance company and see if they would cover this experimental drug - I have now been talking with the insurance company for over an hour, and still have no answer.

To many people, this situation may seem reasonable. The nurse has done her job and now it's time to do my part. I don't know how to fully explain how difficult this situation is. After 10 years of never achieving remission, I have now been on a drug for over 2 years that, for the most part, keeps me out of the ER and reasonably healthy. However, that doesn't matter to the clinical study. I understand that data collection is important for the scientific process, but that doesn't make my life any easier. At what point are patients treated as people who deserve health just as much as anyone else? The coordinator has treated me as an expendable lab rat that has completed her time.

Even if I can convince the insurance company to help pay for this drug, I have no idea what dosage I'm on, or even how often I receive this drug. And although I will have to go off the clinical study, they will not release any of my personal information to me to help the transition. I will need to start from scratch with 2 possible dosages and 2 possible time frames. They will put me on the low dosage to start, but who knows if that will work. The danger of going off-label is that some people start a flare-up, become sick, and then potentially the drug stops working.

This system holds no compassion for patients. When I've spoken with people who work on the study and insurance companies and mention the importance of staying on a medication and dose that works for me, they don't even apologize. Their response is, "Oh well, we can't do anything for you."

I don't feel as though my health is important to these people - I know it's not them in particular; they're just doing their job. We have a broken system that doesn't help the people who truly need it.

As a lab rat, I've learned that science, over health and all else, is most important.

I Can

Recently, a friend told me her theory that people age themselves by telling themselves they're too old to do something. Rather than enjoying life, people let their age define them.

"I can't"

This seems like a simple phrase, but it has the power to stop a person in life. Many of us fall victim to these two words. For the last year, I have let Crohn's use these words to define my life. 

In November 2013, I reached my first non-surgically induced remission. I ate healthy and exercised every day. I never felt so alive. Then, a study abroad program (which I'll never regret), caused my disease to spiral out of control. As symptoms worsened, I allowed myself to eat whatever I wanted (telling myself that anything would make me sick). As the binge-fest continued, I became more fatigued and symptomatic; the summer of 2014, I rarely worked out.

The fall of 2014 became the worst time for me. At 21, I needed to wear adult diapers. I never exercised. I had pain all the time. I told myself I couldn't work out. I couldn't eat healthy because it wouldn't help.

Then, I switched physicians and my new medical team helped me find a new treatment plan. By January 2015, I started to feel better. However, months later, I'm still trying to find the perfect treatment plan, causing me to still have regular symptoms.
Although I've felt better these last few months, I've let "I can't" rule my life. I can't run as fast or far as I used to - I'm easily fatigued. I can't lift as much as I used to. I didn't want to do anything because I knew I couldn't participate in activities for the same length of time, or at the same intensity.

Then, I thought about what it meant to age oneself. By telling myself I couldn't, I didn't go to the gym. Obviously I wouldn't become stronger by sitting around in my dorm room.

"I can"

The start of this attitude has helped give back so much of my life. Rather than saying how much I can't do in an exercise, I tell myself what I can do. I can go outside and run until I'm tired. I can try higher weight sets. I can try.

With this attitude, and the help of family and friends, I can slowly feel my strength returning. I have set many new goals and stopped looking at what I used to accomplish. I have more important goals for my future that only present me can start achieving.

Health Discrimination

"If we wish to avoid being numbered amongst the oppressors, we must be prepared to rethink even our most fundamental attitudes" (Peter Singer "All Animals are Equal").

Some people argue that feminism is the last discrimination left for us to conquer. However, as Singer points out in his paper, we should never feel comfortable saying no forms of inequality still exist. In my Biomedical Ethics course, I realized there is a very real discrimination against those that live with a disease. I doubt this occurs intentionally; rather, people are ignorant that certain issues for which they argue display an underlying belief in the inequality between the healthy and those with an illness.

In the future, genetic selection can become a possibility for those considering to have a child. In this, doctors would create several viable embryos. At the eight cell stage, physicians study the genetic make-up of one cell. Then, a genetic map shows parents the risks of each potential child for developing  various diseases, or other superficial qualities such as eye color. Parents may choose which child comes into existence.

Some philosophers argue that this technology brings an obligation to the parents to genetically select all their children. "Couples who decide to have a child have a significant moral reason to select the child who, given his or her genetic endowment, can be expected to enjoy the most well-being" (Savulescu and Kahane "Procreative Beneficence). In a debate on this topic, Savulescu argues that society would overall experience less suffering in the world should less illness exist.

Without a further look, this reasoning seems to make obvious sense. However, one must remember that this argument is to genetically select people before they come into the world. Imagine someone inserting race, gender, religion, etc. into this reasoning. Overall, males enjoy a better quality of life, therefore we should genetically select only for that gender. Society would then experience a decrease in suffering. Intuitively, we know this reasoning does not add up. I challenge you to see similar discriminatory qualities in the argument when you replace gender with health qualities. By selecting against specific illnesses, parents boldly state that people living with that disease are not worthwhile and do not wish to bring another person with that illness into the world.

A non-identity problem also occurs. An advocate for disability and disease, Elizabeth Barnes, writes, "Why choose negative selection? It can't be to prevent local harms, because it only makes sense to prevent local harms to a specific individual. But there is no individual that you are preventing harm to" (Barnes "Disbility, Minority, and Difference"). Take into consideration, genetic selection does not increase overall quality of life for any person (perhaps the parents, but I think it is unfair to discriminate so the parents can have less medical bills). Selection does take child x with disease x and then give you child x without the disease. Rather, parents choose to bring child y into the world. Implicitly, the parents have chosen child y because they believed child x with disease x would not have as good of a life. We can see that no benefit occurs to child x because child x does not exist. As well, child y does not benefit because child y had no disease in the beginning.

We run into many issues at this point. Savulescu's argument stated that parents should genetically select for healthy children because they would experience better lives. However, we see that no one experiences an overall better life. Some argue that the better life occurs throughout society. They say the world would experience less suffering, so genetic selection would ultimately benefit everyone.

I hope everyone can see the problem here. This states that by not having people exist that have an illness, the world would overall be better. People that believe genetic selection would decrease suffering wish those with illnesses out of existence. Child y makes the world better than child x. Most of us know at least one person managing an illness that is an inspiration to us or even to a large population of people. Could you imagine had genetic selection been possible centuries ago and we selected out the people who we assumed to have "less good" lives? Abraham Lincoln who was believed to have depression, Isaac Newton who is thought to have some form of autism, and many people that we admire today that manage illness. I think most people would agree that society would not have been better should these people not exist.

Savulescu states we should select children with the best possibility for a good life. Although this author argues we do not know enough about genetics to make this decision, people exist today that think selecting against illness(es) will better the lives of their children. This belief shows deep ignorance on the effects that illness has on one's life and is deeply insulting to those that manage a disease. Having a disease does not increase overall suffering in the world. Rather than taking measures to stop people with illness from existing, the medical field should focus efforts on cures for diseases. Then, child x can exist without disease x.

We can only stop discrimination by educating those that do not understand how their beliefs are offensive or show an inequality between people. If you, or someone you know, lives with a disease, spread the word that the world is better because we exist!

Find Autonomy through Depends

Autonomy

We all strive for this - the ability to choose what we do and when we do so.

I have always reasoned that I changed myself for myself, not for my Crohn's disease. Changing my diet to eating healthier and exercising everyday, I did that to feel better, not because my disease took control of my body. I chose to take the necessary steps to feel better and to live a more fulfilling life.

The past nine months have tested my ability to find happiness within a flare-up. From a summer of a liquid/soft diet to no longer running due to my constant need for a bathroom, Crohn's disease has tested my positivity, and definitely gotten the best of me at times. After 11 years of telling myself that my disease will never dictate my life, I am forced to buy depends.

Since my diagnosis I have always considered myself fortunate enough to rarely have an accident. I have found some interesting objects to use as a bathroom, but the point is that I usually save myself from the need of changing clothes.

This last month has taxed my patience with Crohn's. Weeks have passed since I have had bowel movements in the single digits throughout a day. My activities must involve nearby restrooms, just in case. I am too scared to run because the jostling will cause my bowels to become angry.

The decision to wear depends has been long and difficult. For whatever reason, I have continuously told myself that as long as I can make it to the bathroom, I have successfully kept autonomy even with a chronic illness.

Thinking about how I have lived this last month, I think that wearing them will help me regain control. Although I will still try my hardest to make it to the bathroom, I will no longer have restrictions to stay close to the bathroom. I will run again and have no fears about going for walks.

For many people managing Inflammatory Bowel Disease, having an accident can make the most significant negative impact on a person's life. Most people associate an uncontrolled bowel as someone who cannot truly live life. I am not proud of my need for depends, but I will not be ashamed that they will make my life easier.

The most important lesson I have taken from this decision concerns openness about your situation. I am fortunate enough to have a supportive boyfriend that will go with me to the store to buy my first set and has lifted me up through this difficult decision. My friends at school have helped me through the rough periods and provide constant encouragement. This is not something a person should keep to themselves to save face. No one should feel shame for using something that will make their disease more manageable.

Humans of Mayo Clinic

My school has started a "Humans of..." and it's been really cool to learn about what people are thinking and how those experiences affect their lives.

For anyone that knows me, they know that I love talking to strangers and learning about their lives, ambitions, etc. My favorite place to talk to people is Mayo Clinic because you never know where the people are going to be from and usually they have very powerful stories. I usually try to share those stories, but it doesn't always happen. I think it's important for people to realize just how strong we can truly be.

A couple months ago I saw a woman in the waiting room - she was painfully thin and had an IV line placed in her arm for easy access. I sat next to her and asked why she came to Mayo. She said that she came to live. Back home, she was told that she had two months left to live. They had taken out so much of her intestines that they couldn't remove anymore. She weighed less than 100 pounds and the medicine wasn't working. For the last few months she had been taking nutrients intravenously because she could no longer eat. Mayo was her last hope, but it had to work - back home she had a daughter that was counting on her and she was going to keep fighting until she was strong enough to be everything that her daughter needed her to be.

Talking to this woman was inspirational. While she was telling me that she didn't know how much longer to live, I saw a fierce desire to not only survive, but to come out stronger. She wanted health not only for her, but for her family. No matter what the cost was for her, she would do whatever it took to make life easier for her daughter.

This last week I sat behind a family. They started talking about his colonoscopy that was happening the next day and how that would affect what happened next. I excused myself for eavesdropping and asked if he was possibly going to be diagnosed with IBD. Turns out - he actually was diagnosed with Colitis 20 years ago without a flare-up until last year. Then things got real bad really quickly and he had his colon removed. He was having chronic pouchitis and they were looking at possibly doing a permanent ostomy. We talked for a bit and I told them about the Great Bowel Movement and then about camp when the wife said her niece has Crohn's disease. They seemed really excited to be able to talk to others about IBD so I'm not sure if it's something they really talk about.

During this talk, his family was the most inspiring. Throughout my eavesdropping the wife and boy seemed to be very supportive of the man. They didn't make the visit into a huge deal, but were letting him lean on them as much as possible. So often, we focus on how difficult the disease can be on the patient and lose sight of how it can affect the family dynamics. Many times, patients' families are the unsung heroes. Them and friends. I don't know what I would do without my friends who sit with me and distract me when I'm having a hard day.

I'll try to share the stories of others more often - I don't always have time to chat with people, but I like to.

The Chronic-ness of Disease

It's been way too long since I last posted; as such, you all get to hear about all of the fun musings I've had.

Lately, I have been struck by the chronic-ness of my disease (now you all understand the title of my post!). After 10.5 years, Crohn's should just be a part of my normal. Yet it continuously throws me out of balance.

Some of you may remember my excitement at the end of 2013. For the first, I achieved remission without surgery. I was exercising, eating well, and it seemed like nothing could stop me.

Then Crohn's left me with the reality check. My family and I were so excited about me going to Jamaica. For once, my disease wasn't dictating my life. We made these plans almost a year in advance and stuck to them. It was a great feeling knowing that I didn't have to give something up later on just because my Crohn's decided to be a little shit.

During Jamaica, Crohn's decided I was forgetting what it was like to be sick and I ended up taking way more vicodin in Jamaica than I had in the last 6 months. But that was nothing to what this first month home has been like. I'm starting to get used to pain again. I can ignore the stabbing pains and found out today that I can even give a pretty good speech when all I want to do is curl in a ball while the doctors push all the pain medications into an IV.

Crohn's is not a disease. It is a way of life.

For the last months of 2013, I forgot that. Crohn's was seeming like a disease I just happened to have, but not something that actually affected my life. Now, I'm needing to remember how to deal with having a chronic illness. I need to cancel plans because the pain is too great, I need to watch what I eat, I need to be careful when I exercise to not push myself too hard.

Time to get out of my pity party. Crohn's is going to be a part of my life forever and there will be better times. I need to just remind myself when times are tough that eventually they will be good again.

A Second Chance

Over the last ten and a half years I have struggled with my disease both physically and emotionally. When doctors heard that I was "only" having 3-6 bouts of diarrhea, they got so excited about how "well" I was. In my teens, was I already doomed to always being worried about where the closest bathroom was? For the rest of my life, would I need to carry around a spare change of clothes for those unavoidable accidents?

In October of 2012, I entered in a clinical study. At first, I was a non-responder and I was getting rashes after some injections. It seemed as though once again, a drug was unable to bring me into a complete remission.

In 2013, I began to run. The beginning was excruciating and I wanted to give up so many times. But I stuck with it. Several months later, I was able to run more than a few miles. Normally I'd go to the bathroom a few times per run, but I was doing it - I was fighting my disease.

As it got colder, I realized I needed to start running inside. I dreaded that first run - I love being able to take different paths and being outside. Running on a treadmill has allowed me to hold myself to the speed I want to be running. In the last two weeks, I have taken about two and a half minutes off my mile time. It seems as though I will be able to reach my next goal.

This next summer, I want to run a marathon. But I don't just want to run a marathon; I want it to really mean something - I want to be able to run it in under four hours. This seemed like an impossible feat. However, I have been pushing myself to achieve this goal.

I look at how far I have come in this last year. Through diet and exercise, I am making and achieving goals I once only dreamed about.

For the first time, I would consider myself in a real remission, not just a I'm-doing-better remission, but an I-got-my-life-back kind of remission. I'm planning on taking my spare clothes out of my backpack and no longer needing to scope out the bathroom situation.

The clinical study and my new lifestyle have given me a second chance at having a real life. Not everyone is given this opportunity and I don't plan on wasting it.

Crohn's and Colitis Awareness Week

Considering it's Crohn's and Colitis Awareness Week, I thought it'd be appropriate to finally write another post.

Things are going really well for me - my last colonoscopy showed only mild-moderate ulceration in my neo-terminal ileum and some moderate ulceration at my anastomosis. It was probably my best colonoscopy discluding the one performed shortly after my surgery three years ago.

I know I should be very grateful to have such a good colonoscopy, but the only reason I had one was because I was having 10-12 loose stools a day. My doctor ruled that as caused by some bug, but we said that it was sketchy that I have such up and down periods of symptoms.

Now that I know my intestines look well, I'd like to make it my goal to reduce symptoms. I want to stop running fevers and having diarrhea and having pain. Maybe that means finding the right amount of exercise and diet.

I think maintenance is extremely difficult. On one hand, doing certain exercises and eating completely healthy would probably mean a lessening of symptoms, but I was miserable eating only rabbit food. As well, I like to push myself - even though that means some workouts will end early because I'm in pain.

A patient advocate told me about a woman who was diagnosed with Crohn's disease in the '60's. She said that if she avoided everything that ever caused her pain, there would be nothing to eat or do. Sometimes, she eats things that she knows is going to cause her pain, but that's because she wants to live.

That's about where I am. It's time to start figuring out how many symptoms I am willing to live with and what kind of lifestyle that keeps me happy will put me there. Although being symptom-free would be my ultimate goal, it looks like we're not quite there.

Happy Awareness Week everyone! Hopefully we all can find the happy medium of living our lives with minimal symptoms.

The Fall

Sometimes life really sucks.

It's so difficult to go from the high of completing an awesome goal of running the half-marathon to not even being able to run two miles. This morning I made myself go for a run although I wasn't feeling well because I told myself that I was never going to let myself give up just because of my Crohn's. By 1.5 miles, I was having bloody diarrhea outside, throwing up, and bent in pain.

I've switched to a soft/liquid diet because it hurts so much to go to the bathroom that I'm scared to eat solid foods because I know what's going to happen once it goes through my intestines. Over the last week, the fewest times I've gone poop in a day is 10 times.

School bathrooms suck. It's so awkward having Crohn's issues when there's a person in the stall next to you and two girls gossiping just outside your door. I always laugh a little, wondering what they would think if they knew what was going on just a few feet from them.

Next week is my next study appointment. Honestly, I have no idea what's going to come from it. Obviously I've been getting worse, but I'm supposed to be studying abroad in Jamaica next January - all I really need to do is survive until then. Switching medications could be a huge blessing - or I could get a lot worse. There's also the possibility of just doing a liquid diet until the end of January so I can just push through, but I don't know if the doctor will go for that.

How do you decide when you know that either choice could be really awesome, or lead down an even worse path?

Defying my Limitations

Veni

Cucurri

Vici

I came

I ran

I conquered

Today, I reached my first major goal in running. I ran 13.1 miles. They were slow; they were tough; but they have been completed for the first time.

My initial goal for the day was 11 miles. Normally when I go for a run, I look at how far I'd like to go, the pace I'm hoping to go, and then head out for my usual trail. Today, I took to heart what one of my friends said, "When you have good running shoes, every run is an adventure." There was no way I was going to stick to the same trails that I always use. My run today was absolutely gorgeous - I discovered new trails in the words and spent a couple hours running through beautiful fall trees.

There are no words to truly describe how I felt after meeting this goals - sore, tired, and worn out come to mind, but there was more to it than that. There was satisfaction in knowing that I didn't give up after poop #1 or #2. There was relief knowing that my Crohn's can't keep me down forever. There was pride in knowing that I have pushed my body farther than many people thought possible.

My new favorite quote reads: "Know your limitations. Then defy them."

I've always told myself that nothing was worth doing that would make my Crohn's give me a tough time. Then, I started running. There was no way I was going to stop running whenever I had abdominal pain; I never would have made it past two miles. This journey has taught me that I don't have to stop doing what I love just because Crohn's is yelling at me.

Sure, my time sucked, but I look at this first half-marathon distance as the starting point for me to become a much better runner. I have so much to work on - and that's very exciting for me.

I look forward to getting my half-marathon time under two hours.

I look forward to being able to run a marathon.

Most of all, I look forward to defying my Crohn's every time I wake up and put my running shoes on.

An Unhealthy Relationship

Most of the time, I have a pretty good relationship with my Crohn's. We have fun together - we go out on dates to CCFA events, go to camp together, and we have lots of great inside jokes about my digestion. On the surface, it seems like we belong together.

However, things are not what they seem in the private aspects of our relationship. Crohn's can be very abusive - from the gut-wrenching pain to the early morning vomiting - Crohn's doesn't like to leave me be for very long.

But after a day of beating me up, Crohn's always apologizes. I get to talk with my awesome boyfriend who I met through Crohn's or I get to hang out with some Crohnies. I can never really be mad at Crohn's because I see all of the things that it has brought me.

Some weeks, however, it takes all of my strength of will to not want to break up with my disease. Days like today, where it holds me back from completing my running goal. The days where I can't walk because I'm in so much pain.

Some days, Crohn's is just a huge pain in my ass. It won't let me sit for long periods of time. 

And don't get me started on the abuse it wreaks on me when I have to go to the bathroom! When I have poop running through my intestines, Crohn's gets really mad and starts to become abusive again. It's getting to the point where I'm scared to eat because I know Crohn's isn't going to like me going out and putting that stuff inside of me.

Lately, my runs have been testing our relationship. At first, Crohn's didn't like them, but after months of begging and pleading for Crohn's to understand the importance of running, it decided to let me reach for my goals. Nowadays, Crohn's isn't being so supportive. It's a bit jealous about the time I'm putting into my runs and has decided to start complaining whenever I head out. 

It's not a healthy relationship - but it looks like we're in this for the long haul.

Beating the Crohn's

Starting to run was probably the hardest thing I ever did. I got sick all the time and felt like Crohn's was laughing at me the entire way - telling me that I was never going to be able to run like everyone else. All the times I pooped my pants or had to squat next to a tree, hoping that no one would run by and see, seemed as though running was going to be a continuous reminder that my intestines hate me.

The last two days have started me on a race that no longer allows Crohn's to hold me back. For the first time ever, I have not needed to race to find a suitable place to poop for more than one run in a row. Running actually felt good. 

There was no pain, no regret, no wanting to give up.

There was just the trail and myself.

Crohn's doesn't have to be a pain in the butt when in comes to running. Yes, it has taken me nine months of experimenting with different food and pushing myself to the point of throwing up, but I will beat Crohn's, and it is never going to take me down the road of wanting to give up.

 

The challenge for everyone else is simple:

Don't give up on your dreams. No matter how big, small, or seemingly impossible. You can and will, eventually, complete them. Who cares if it takes a few years? All that matters is that nothing can stop you from being everything you want.

Be Your Best

A wise woman once told me to always do my best. Sometimes, my best will be getting out of bed after a night filled with pain. Other days, my best will be running a marathon. No matter what my best is that day, my Crohn's should never stop me from reaching my full potential.

I have tried to live by this advice, but I will be the first to admit the difficulties in always being my best. Some days I just want to be lazy and quit, saying that I must have gone as far as I can, but deep down knowing I could really push a bit farther. Sometimes I say that I'm looking at the big picture; that if I push myself today, I couldn't possibly do my best tomorrow.

Right now, I ask myself, why can't I be my best every single moment of the day? I think the problem so many of us have is that we compare what we are doing every single moment with everyone else out there in the world. If I compare myself to people that have been running for years, of course I will always fall short. However, I have been working on reading my own body, and trying to become satisfied with my three mile runs, realizing that that workout was truly all I could give that day.

The human inside of me wants to be better than everyone at everything. The Crohnie inside of me tells me that I need to realize that there are some things I just cannot do. But my question to myself: why do I have to base myself on others or my disease? Why can't I just be me and just be happy with whatever I do?

My goal for myself for the upcoming school year is to be happy with myself. My goal is to not look at someone else and see myself as not good enough because I am not the same as them.

I am not just a Crohnie.

I am not just a Chemistry geek.

I am not just a runner.

I am an individual. I am a beautiful kaleidoscope of mismatched hobbies and ideas that make me who I am, and I am proud of everything I have and will ever accomplish.

I challenge anyone who reads this post, should you be someone I know or a complete stranger, to love yourself for every thing you are. There is not a flaw inside any of us because each of us is amazing. Just remember to always be your best, whatever that may mean for you personally.

A Decade of Crohn's

It is officially ten years since I was diagnosed with Crohn's disease; this is an anniversary that marks the day my life was changed irrevocably. As this day approached, I couldn't help but think about how different I am now compared to this day, ten years ago. For all of my family, friends, and even strangers, I would really like to recap my story.

 

~9 months prior - diagnosis

At first, I had no idea what hit me. I was walking upstairs to my room when I had to stop and sit because I started having such terrible abdominal pain. At 9 years old, I figured it was a tummy ache from something I ate. I kept on my business and didn't think about it again.

Fast forward a couple months and this pain was happening every day. I remember lying awake at night, crying because the pain was too intense for me to sleep. I would try to curl up as best as I could in my desk to minimize it. As well, I was starting to throw up and have more frequent, loose poops.

I didn't understand what was going on. Before this, I had never been sick with the flu, or even a cold. In my now 10 year old mind, I was convinced I was dying. My parents found out what was going either because I had had my first accident, or they saw one of the times that I couldn't make it up the stairs any longer without having pain. Sometime in the late winter/early spring, I was having the worst pain of my life, and it wasn't going away. My parents finally had enough and took me to some clinic (the urgent care or emergency room). After not finding anything through some basic tests, they figured I was either making it up, having a very stressful time in the 4th grade, or bulimic.

This continued on until I was no longer able to make it to school on time in the morning. Our routine was: wake up and all eat together, I go to the bathroom to the bathroom to throw up while my brother went to school, and then I went to school once I finally stopped.

The month or two prior to my diagnosis consisted of me no longer being able to walk because I had no energy. I then slept on our couch downstairs with all of the fans on and a cold rag because I was always running a low fever. One of my parents would always wake up and comfort me while I was either crying out in pain or throwing up.

 

Diagnosis (July 18, 2003)

Finally! I was diagnosed with Crohn's disease (unofficially). Although I had just had my first colonoscopy at the age of 10, the doctors were finally telling me that they knew what I had. In my mind, this meant that everything would be fixed. They started me on 18 pills a day and sent me on my merry way.

 

Elementary - middle school

During this time I was never as sick as I had been, but I was never close to feeling like I had before diagnosis. My doctor at the time believed that I should be able to go a couple weeks without pain or diarrhea, so I was switching my medication every 2-4 weeks in the search of the magical combination that would make me better. During this time, most IBD treatment was just guessing. It was still a bottom-up approach in smaller towns, so pills were the only treatment available to me.

Prednisone became my worst nightmare. Whenever I look back at pictures, I see a huge moon face staring back at me. I remember getting terrible mood swings that would have me laughing one second, angry the next, and then bawling my eyes out. Self-esteem hit rock bottom as people would tell me what a cute chipmunk I made (what every 13 year old girl wants to hear). Kids would call me fat and they teased me about my Crohn's, saying that I was going to explode because I couldn't poop. This so-called "miracle" drug is the reason for the worst depression I have ever experienced. As well, my joints always ached and it made me very tired.

At this point I learned the mantra that I should never push myself because I have Crohn's. I had to have a routine down that I didn't deter from, otherwise, I would get sick. I would have to wake up at a certain time and eat at just the right time or I start throwing up and I would be sick all day. Later on in life people would laugh at my routines and think I was weird, but it was learned during this time in which I had to stick to a routine or I would miss out on the day.

 

Freshman - junior year

At this point I refused to ever go on prednisone ever again (and I am proud to say I have stood by that rule). During this time of my life, I was never super sick, but I was never well either. I would always have some sort of sickness because of my suppressed immune system. I would miss a lot of odd times at school because of the flu, having operations from abscesses that would form, or because I was "Crohn's sick." I would have a couple loose poops every few days and have constant pain. I still never really pushed myself, but I wonder now if I could have risen to the challenge had I tried.

My life was based around my Crohn's. I would only do things if I felt it was safe for my Crohn's. Plans stopped being made because I never knew if Crohn's would make it impossible to follow through.

Around my sophomore year I started Remicade, an IV drug. I was doing slightly better than before, but in a couple months I felt as though the effect was wearing off. My doctor kept ignoring my complaints, saying that my blood work was fine. He kept saying that I was just going to keep doing what I was doing. Finally, he allowed me to have a colonoscopy, where we found lots of polyps, inflammation, and a stricture. My doctor said that there weren't really any other options, so we just had to stick with the same treatment.

 

Senior year

At a swim practice, I collapsed in mind-numbing agony. I couldn't believe the pain that was ripping through my abdomen. We went to the emergency room and were hopeful that this was what it would take for my doctor to finally do something.

We were wrong.

This was when I switched to Mayo clinic. Over 3 days I had a lot of tests done and it was decided that I would go on a clinical trial. It was really cool seeing how a clinical trial worked, but I was considered a non-responder to the medication, which the doctor figured would happen. He thought there was a good chance my stricture had scarred, which means that no medication could help it.

I finally had the surgery that would change my life and put me in my first ever remission. It was the best decision we ever made. Although it meant that I was still recovering over Christmas, my abdomen was a lot happier.

After fighting with insurance, I started Humira after my 18th birthday. We soon found out that I was allergic to it after I broke out in a full body, medicinally-induced psoriasis rash. After about 2 months of injections, I went off, and it took about the same amount of time for me to recover from the reaction.

I then stayed off medication since I was in remission. For a couple months, I was Crohn's free and medicine free. Although I was finally free to break away from my mantra that Crohn's came first, there was always that scared voice in the back of my mind that wondered how far away my disease really had gone. I may have not had many symptoms, but I was living my life as though I still did.

 

Freshman year - college

The stress awoke my Crohn's from its hibernation, and it sure was cranky after its long nap. I went onto Cimzia (the clinical trial I was on my senior year, although it was no longer a clinical trial since I had turned 18) and methotrexate. The medications were alright, but I had to do them on Friday because they would make me feel sick and I would need a day or two to start feeling better.

My freshman year of college was built around trying to adjust to college just like everyone else, and trying to deal with my first ever flare up after a remission. It was so frustrating and depressing to have everything pile onto me. Fortunately, St. Olaf is such an amazing school for accommodations and I was able to get special meals, get my own room, have a car, etc.

A lot of my professors either knew someone with IBD, or they were very willing to talk about my disease so they would understand what I was battling. My second semester, I even found a professor that also had Crohn's disease.

My friends were really amazing. Whenever I was sick, they would get things for me so I could stay in my room. One night I was having the terrifying pain in my abdomen, and one girl carried me down from the 4th floor (no elevators!) while two others drove and stayed with me at the emergency room. It was great to know that I could really rely on people. Over the summer, I had to go to the emergency room again, and it was decided that we would have to do something different.

 

Sophomore year - college

Another clinical trial was decided upon. I was in a very low state-of-mind after I was continuing to have all of these issues even though I was at Mayo. After the introductory phase, I was considered a non-responder, which was actually nice because now I know I am actually getting the medication.

Although Crohn's seemed to be tearing me down, it really brought me right back up. My professor with Crohn's suggested that I start a support group on campus. It ended up that about 15 people joined throughout the year, and it was really great getting to have Crohnies on campus.

I then joined a national council for people with IBD in college. Through that, I have met some very strong leaders who are having many of the same issues as me. I have met some important people in our country and within the CCFA community. I have been able to get more involved with CCFA and help out with the Minnesota chapter, which has been a blast.

This was the year that I decided to throw out the Crohn's-first attitude. I started to go to the gym and work on getting in shape. I also started eating better. It sucked terribly at first, but eventually I started feeling a lot better.

Although I went to the emergency room a couple times in the spring, I had a much better outlook on life.

 

Here and now

Right now my life consists of camp, camp, and more camp. However, on my two hours off a day I have been running and trying to prove to myself that I really can push myself. Now, I can regularly run 6 miles, a feat that I had not thought would ever be possible. I have my sights set on a half marathon, a full marathon, and maybe even farther.

Sure, my Crohn's isn't perfect. Until this week I had had three weeks of non-stop diarrhea. I have had several accidents in the last month and I have needed to take pain medication.

But I will not take any of this without a fight.

I have realized that one symptom, or even a week of symptoms, does not mean that I have to stop being active. I didn't stop running after my accidents, and eventually I have formed stool again. Some days I can only make it through 2.5 miles (which to say that is the only amount I can run on a bad day is fantastic), but other days I can do more. Now that I have given up my mantra that I shouldn't push myself because I have Crohn's, I have been able to go so far. I hope that I can reach my dreams and inspire other people that they can as well.



Never Give Up

I'm going to continue on my story about how I got into running.

As I said before, you need to set goals for yourself and you need to keep going, even if you have a bad day. For me, it was difficult to continue when I hadn't met my goals. I told myself in January that I would be able to run six miles by the end of May. By the time May was coming around, I was lucky if I ran 20 minutes without stopping. It was super frustrating to realize I wasn't even halfway to my goals. I had to keep telling myself that it was okay if it took another year to run a half marathon.

I then went to DC and didn't have time to run for about a week because I was unpacking from college and repacking to work at my summer job. I wasn't even sure if I was going to keep up with running. However, we have a two mile loop around the lake, and I figured it would be easy enough to run that.

Boy, was I wrong.

A week of not running and I had to walk the last half. It was very humbling to have to work my way back up to running a couple miles at a time. No matter how difficult it was, though, I kept running a couple times a week. Eventually I was able to make it the entire way without running. Then I was able to go a little faster. Then, last week I hit my three mile marker.

 

Throughout the rest of the summer I have plans to improve my mile times and make it up to six miles of running at a time, but I will be okay if I do not hit those goals. The important part is to keep running and keep aspiring to make those goals eventually happen.

 

Keep working towards your own, seemingly impossible, goals.

Running and IBD

Now that I'm really trying to get into running, I've started reading more blogs and articles on it. There's plenty of advice out there about how one should train and eat during runs. However, not a lot of places fit IBD into the picture.

Throughout the next few posts, I will share with everyone how I've gone from not being able to run a half mile, to consistently running 3 miles.

First off, I set goals. I cannot do activities unless I have a goal in mind that I want to reach. I started in January and told myself that I wanted to run a half marathon by the end of the year. At the start my running was terrible. I was constantly feeling nauseous and needing to poop.

 

My best advice for you Crohnies: try different routines until you find what works for you.

 

I don't care what all of those fancy websites tell you, they don't have a disease that makes the semi-bouncy motion of running make you need to poop every few minutes.

You might need to run at a certain time of the day, or a certain amount of time after eating. That was my problem in the beginning; I thought that there was a "right way" to run and it ended up being completely wrong for my body and my disesase.

 

Secondly, I didn't stop just because I kept having one bad day after another. Sure, there were days that I was done after a quarter of a mile, but I knew this was something I really wanted, so every couple I'd be trudging along.

 

Although you may think it is impossible for you to run because you have IBD, if you give yourself enough time and try out different times you run, etc. I know that anyone can start running.

 

Here's your challenge: make a goal for yourself, something you thought IBD made impossible, and make it happen.