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.

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.

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?

Mentality

I'm really trying to write one post a week, but we'll see how this goes!

One thing that has been really difficult for me lately is trying to figure out what kind of mentality I'm supposed to have regarding Crohn's disease. My "growing up" with this disease revolved around a doctor who believed I should feel as though I didn't have a disease. She always wanted me to call her if I was sick for more than a few days and had ruled out a cold or the flu. Then, we would switch around doses and hope that that was enough to make me feel better. My first couple years, I was constantly fiddling around with medication because my doctor believed that a remission meant I could go weeks without a single symptom.

Over time, I've realized that I may never become symptom-free. I'm so tired of constantly switching medications and trying out new things. However, I now wonder at what point I'm supposed to become satisfied. I realize that most Crohnies live with an almost everyday, symptomatic disease, but how many symptoms are too much?

Unfortunately, I still want to be completely healthy. I want to wake up and not be nauseous, or have formed stool when I poop. I don't know if I'm supposed to accept the fact that I'm going to always have pain and run the risk of accidents occurring, or if I'm supposed to fight to feel better. We're all hoping that this diet tips me into the realm of feeling better all the time, but it's hard to imagine what that's like after ten years of constant pain and diarrhea.

I know I can take pain and I can deal with all of the symptoms, but I really don't want to. It seems like there may be no other choice, but that doesn't seem like any real way to live.

All I can say is that I hope this diet works, and I hope that I stop craving ice cream.

What to do when medicine fails

Hey everyone! January flew by. J-term has ended and I am currently relaxing at home, about ready to fill out a facilitator training application so I can run an official CCFA support group. Crazy stuff.

I've definitely learned that one needs time for relaxation. Lately I've been so worried about getting everything done for the NCCL (national council of collegiate leaders) and the support group on campus and school work, that I haven't taken a lot of time for myself.

My Crohn's has seen the need to show itself again. I find myself running to the bathroom and lying awake at night because the pain makes it difficult to fall asleep. I felt so well after starting this clinical trial - I don't understand why all my syptoms are coming back. After calling Mayo because I was running a temperature, they talked about the possibility of hospitalizing me. I don't about other organic chemistry students, but I don't have the time to sit around in the hospital trying to get better.

So what do I do?

I've never understood why medications don't work for me that work for countless other people. Maybe I have a really strange form of IBD. I can eat raw vegetables, but cooked ones won't be digested. It's as though my body feels the need to be unique.

The only thing it seems like I can do now is rely on natural treatments and diet. I had given up on the no grain, no dairy, no sugar, no fruit diet because I felt so depressed eating on it, but it seems like that's my best shot. For Lent, it looks like that will be my devotion - trying to get healthy again.

Sometimes I wonder what it would be like to  have a normal digestive tract. Food would be fantastic, but I would probably weigh 50 pounds more. I would be able to sleep more, but I would probably get less done because I'd be sleeping.

I never was a believer in holistic type things or diets - they always seemed like a bit of hogwash. Maybe in a month or two from now I will actually reach remission, and I will be able to tell everyone that diet is what put my severe Crohn's in remission - not the fancy medicines that my brilliant doctor said would make me feel better.

Winter Blues

I don't know about everyone else, but I definitely get hit with the winter blues. Between the cold, the lack of sunlight, or the lack of really being able to do anything, I always get a sense of futility during the winter. It's almost like a mini-flare. I can't go outside to play, I can't run around, and I really don't want to go places (although now it's because -35 is just too cold to go for a walk in).

Right now I've especially been getting hit with the blues. Because it's so cold, my intestines feel like they're cramping up when I go outside. As well, I'm really hating my diet - I'm not a rabbit, so why would I constantly want to be eating leafy things? However, when I eat something that's not on my diet, my stomach grumbles at me. This morning I had grapes for breakfast, which earned me some quality time in the first floor bathroom in the library.

As great the opportunities have been through my disease, I definitely am feeling the hopelessness that sometimes comes along with chronic diseases. With the clinical trial, I was hoping that I would finally feel good, but I'm tired all the time, even after eight hours of sleep.

I'm not one to bemoan my disease, so I'm trying to think of a way out of these winter blues. There's a support group meeting coming up this thursday, so I'm thinking quality time with the Crohnies will be beneficial. This year I've realized that I've been immersing myself more within the IBD community - between the support group, national council, and just spending more time with the Crohnies on campus.

I think that is a good way to stay away from those sad feelings. Don't try to pretend the disease doesn't exist, but embrace it, and see all of the good aspects that come from it. Although I have to admit, that's not always the easiest thing to do. Some of the Crohnies on campus see the psychologist at school regularly. I've heard that over 90% of people with IBD are depressed - maybe we should all make a committment to finding someone we can talk to about our problems. They're too difficult to live with on your own. Just the other day I had my first accident of the school year. Right afterwards, I texted my Crohnies and we bashed IBD and made poop jokes and then ended up reminiscing about great times at camp. I know I wouldn't be able to do this without them.

I guess that would be my advice right now - talk it out. It's totally cliche, but the burden becomes easier to bear when you share it.

Being an Advocate

What a busy January! I'm finally back into the swing of things after the council trip to Philadelphia. So far, being on the National Youth Leadership Council - or whatever it's now or will be called - has been a great experience. All two weeks of it. I'm learning a lot about what's going on in IBD in the other parts of the U.S., especially with research. Hopefully in the next few years we'll be treated more specifically on the pathways that are being blocked by the mutant genes we have. The Children's Hospital of Philadelphia is also going to be looking into what is the "perfect" bacterial state of a healthy gut, and hopefully determine what kind of diet would help a Crohnie reach the same levels of bacteria.

Although it's scary thinking that I'll be working with entirely new branches of CCFA, it's really exciting. If all works well, I'll be able to work with Crohnies from the University of Minnesota to reach an even wider audience than St. Olaf and the Northfield community.

The rate of IBD is increasing - probably a mix of better diagnosis and whatever environmental cause. However, people still aren't understanding our disease. One of the leaders of the council explained how her professor wouldn't allow her to take a test later even though she had spent the night in the hospital. Things will only get better if we go out and educate people about our disease. I know poop isn't the most glamorous thing, but we all do it. If you don't spread the word, how can you expect others to understand what your needs are?

For more advice/information on living with IBD in college, you can like Campus Connection on facebook, or go to the National Youth Leadership Council webpage on CCFA. If you type those in google search bar, it should pop up. In the next year we'll be revamping the webpage to have more information and better access to all the links/templates provided on the CCFA webpage. Also, we'll hopefully have programs that will help you spread the word about IBD on your campus. The next couple years should bring about a new understanding of this disease, and I'm very excited that we all get to be a part of this.

New Year's Resolutions

This year, I decided that my health would be top priority when picking out a New Year's Resolution.

When I went home, there was many Christmas cookies and family parties filled with forbidden foods. It was incredibly difficult, but I stayed away from foods I shouldn't eat during my families' Christmas parties; however, I cheated a lot at home by eating most of our Christmas cookies. I realized that it was a lot easier to stick to my diet when I was being held accountable by other people. I'm not always going to be around people, so my first New Year's resolution is to stick to the diet! I will allow myself to eat one piece of my dove dark chocolate (what girl can honestly give up chocolate??) now and again, but that is going to be the extent of my cheating. As great as some of the no-no foods taste, I've realized that I enjoy being healthy so much more.

My second resolution is a bit more ambiguous. I just want to live a healthier lifestyle. I'm going to go to the gym, do yoga, sleep more... and feel good about myself! This is going to be the year that I finally achieve remission status; I can feel it.

I want to challenge other people out there - not just Crohnies - to really evaluate your health. I'm not going to go all health nut on you because I always hated when people did that to me, but there's so many bad things in the food we eat today, and we put all that junk into our bodies. You don't have to have such a strict diet, but anything processed is bound to be really hard on your system. Instead of popping a tums or something to stop diarrhea, figure out what food is causing you problems, and stop eating it.

Eating healthy can be easy, even at college. Yesterday I e-mailed the guy in charge of our kitchen and told him what's going on. He had me meet with the head chefs and I now have all their numbers and text them what I want to eat a half hour before I go to eat. Today I got sauteed spinach and fish. It was so delicious. I won't be using it all the time, but it's nice to have variety. Plus, they said they have shrimp; I know which girl will be asking for that every week (haha).

To end this post, I want everyone to think about one thing they can change about their lifestyle (eating, exercise, etc.) that would make a positive impact on their life, and go for it!

Following the Diet

After receiving e-mails about the diet, I figured I should share what I'm doing and how it's been working for me.

I knew that completely cutting out processed foods and carbs was going to be extremely difficult. I don't eat poorly, but I was never a super healthy eater. I did some research about diets and found out that sugar can actually mess with our brains the exact same way as drugs do. If you take it out cold turkey, you will most likely have withdrawal symptoms and crave it so much that you have to eat sugar again. I decided to start the diet slowly.

I always (unless there weren't any good options) took a dessert after lunch and supper. First off, I cut that out. At first, I really wanted a peanut butter cookie or a piece of chocolate cake, but after a week, I decided to have one, and I didn't even want one. I no longer think about taking a dessert because I just don't want it anymore.

Then, I realized that I ate a lot of bread. When I didn't know what I wanted, I would make a sandwich. Instead of doing that, I would make a quesadilla. It still has grain, but not as much. Once I stopped craving sandwiches, I started making sure I took a salad, piece of meat, and possibly fruit (which isn't on the diet, but I wanted to get into eating healthy).

Throughout this time, I'd stopped drinking milk for every meal. I made sure I drank a glass of water in line for the drinks and then got a second; this is based on other diet articles I read. Water helps clear out our intestines. I stopped putting cheese on my quesadillas and salads and no longer took cottage cheese.

Now, when I crave potato chips or something salty and unhealthy, I eat almonds. I've been doing this long enough that I actually crave almonds over chips. I make sure I eat a small salad with every meal.

I've made myself the goal that by the new year, I will be 100% on this diet. It will have taken me about a month to make the transition, but I don't mind that it took a long time. Having the goal has allowed me to eat a cookie when I want one without feeling guilty, but I'm also working on only eating these foods. It's not difficult, and I feel so much healthier.

 

I will keep you all updated on how the diet is going and whether I feel better. I never believed a diet would work, but we'll see!

 

Merry Christmas!

A Cure/Cause of IBD?

Finals are finally done! Which means I have time to write another post. Today, I had the fantastic opportunity to talk with Dr. Steven Gundry from California. He's done some really amazing research, and I'm hoping to summarize his explanation of his theories about the cause of IBD.

Dr. Gundry first was a transplant surgeon, and apparently one of the best. He first began with the joke about how most people stop an elevator from closing with their hands, but surgeons stop it with their heads, because it's the least important part of their body. Joking aside, he took me throughout the timeline of his research. Dr. Gundry and his partner would do heart transplants, and several times it happened that the patients would develop coronary heart disease. They attributed it to the fact that those patients did not have healthy hearts before the transplant, so the same occurred with the new heart. However, the same thing began to happen when they did heart transplants on otherwise healthy kids.

Down the road, Dr. Gundry met a man who cleared his arteries in six months, with diet and supplements alone. This is a crucial part of his journey. He told me that you cannot see anything unless you go in with your eyes open, and without preconceived notions. Many researchers tend to already have theories about what should work, and that's what they end up seeing. Dr. Gundry saw that this man was clearly better, so for a year he tested this diet on himself and other humans. He thought that it worked, but wasn't sure how.

Dr. Gundry began to suggest this diet to his heart patients. His patients had amazing results. What couldn't be completely helped through medication was gone with this diet. Patients with other diseases said that they were even feeling no symptoms from the diet, which made sense because it was anti-inflammatory. People's arthritis was no longer bothering them, and Crohn's patients, who could never get rid of some symptoms no matter what treatment they tried, were symptom free.

At this point, Dr. Gundry looked at what exactly the diet was doing, whether it had more to do with what patients were eating, or what they weren't. What he realized, was that all the foods he had taken out of their diets included the protein lectin. This is a protein similar to gluten, but he has found that it plays a bigger role in autoimmune diseases. When on a gluten free diet, people tend to eat foods that are made from rice or corn, but corn contains 40 proteins that are very similar to gluten, so that explains why a gluten free diet may help, but it usually doesn't completely take away the symptoms of the disease. Lectin is contained within the seeds of certain plants and the genes of American cows (which is why people shouldn't eat cheese or drink milk from the United States).

This is how he explained how lectin is the problem. Plants are smart, a lot smarter than we give them credit. They can make matter from sunlight, which we have not been able to do yet. However, animals are their predators. In order to keep from being eaten, plants will put proteins (which act as poisons) within their seeds (or babies), in order to keep reproducing. Most animals, once they become sick from eating this plant, will stop eating it. He says that humans are pretty dumb; we think that we can overcome these poisons and take tums or immodium instead of not eating the foods that sicken us.

Lectin is contained in plants that were not originally eaten by our ancestors (if you are from European descent, possibly others as well), such as corn, potatoes, and seeds of fruits. At the beginning of human life (about 30 million or billion years ago), we only ate plants with two leaves. Although they also contain a poison, we had a long time to adapt and be able to digest them. Up until we were introduced to different foods (roughly 10,000 years ago), there is no evidence of arthritis in the skeletal remains of humans. As well, before that time period, most humans averaged to be over 6 feet tall. After then, humans shrunk to an average of about 4 feet, 10 inches (roughly 8,000 years ago). It took only 2,000 years to feel the damaging effect of eating poisons their bodies weren't used to. As he said, 10,000 years is merely a blink of time compared to the 30 (million/billion) years that we've had to evolve to be able to eat green, leafy vegetables.

The Kitavan society from the South Pacific eats no grains, and its only starch is from the taro root. They live well into their 90's with no modern medical care; they have no strokes, heart disease, or many other diseases of the modern world. And they smoke.

Italians refused to eat tomatoes until about 300 years ago because they believed the seeds to be poisoned. Irish people refused to eat potatoes until they had a famine 150 years ago because they believed them to be poisonous.

People with autoimmune diseases have a hyper-sensitive immune system. Dr. Gundry explained that when our immune system sees these toxins in our body, they attack more heavily than they do in a normal person's body.

Dr. Gundry also said that most people with IBD can relate the start of their symptoms to a certain event in their life, one that is usually related to stress or taking antibiotics. This is because our body relies heavily on the bacteria within our gut. There's about 5 pounds of bacteria in our gut, but they contain more genetic information than the rest of our cells combined. If these are messed up, such as by antibiotics or stress, it can start the onset of IBD if we are genetically predisposed to it.

 

I know this post isn't super well organized, but I'm still processing all of this as well. I was never a big believer in diets; throughout my 10 years I've been on tons of different diets, and none (except for liquid) have made me feel any better. However, I've been trying this diet (cheating a little bit now and again) for about 2-3 weeks now, and I had my first day of no loose bowel movements in months, if not over a year. I've gone through years of no remission, but I'm finally hopeful.

 

If you're interested in the diet here's what you can't eat:

Fruits

Corn

Grains

Dairy products from the U.S.

Sugar

 

What you can eat:

Nuts

Green, leafy vegetables

Meats (preferably organic)

French cheese or milk

Sheep and goat milk/cheese

 

If you have questions, feel free to message me!

Uncertainties of a Clinical Trial

Tomorrow is my week 6 appointment for the Ustekinumab clinical trial.
I had a great week about fours weeks ago in which I had only 2-3 bowel movements a day, and very little pain, but I'm back to 5ish a day and difficulties sleeping because of the pain. I get tired so easily and I don't like eating because it just causes more pain.

Sometimes it is so frustrating to be on a clinical trial. I have no idea if I even got the medication. However, there was that one week of being quite a bit closer to a remission state, so I want to have hope that I got the medicine and that it could possibly work for me. As well, because I've been back to where I started, if not a little worse, I know for sure I will get the drug this next time, so I will hopefully be able to tell if it's going to do anything for me.
This whole not knowing thing just gets to me. If I actually got the placebo, but I had that one really great week, why did it only last one week? And what could I do to get that back, because it wouldn't have been from the medication. But if I did get it, why did I only feel good for that one week? Why are my symptoms worsening on it?
Being on a clinical trial, well, I don't really have much hope left to ever reach a remission status. If this doesn't work... then what do I do? I go on another clinical trial and go through all of this uncertainty again?
Mrs. Buntrock told me about her no-carb, no-sugar diet. While it sounds like it's really worked for her, I'm 19 years old. I would be restricting myself from eating pretty much everything. I love pizza and ice cream, I really don't want to stop eating it for the rest of my life.
There's a lot of times where I wonder if I will ever reach a remission status. Since I was 10, I have had 2-3 months where I had few enough symptoms to be considered in remission. Is that what I have to look forward to the rest of my life? While I love learning about different medications and the theories of the cause of IBD, I would much rather learn about it from a book and not as a patient. At least I'll have plenty of personal experience when I'm a gastroenterologist.
All these questions, but no answers. I just hope that all the data they get from me brings us a little bit closer to understanding IBD.

Being a Crohnie College Student

*Disclaimer* I may be rambling because I'm not feeling the greatest.

Today I woke up feeling absolutely awful. I have a headache, cramps, diarrhea, and the overall spaciness I sometimes get when not feeling well. It really put my last post into perspective for me; it's a lot easier to be thankful about a disease when you aren't feeling super sick from it. On the note of being thankful, I thought about making a post about being a college student when you feel like crap (poop jokes!).

We all know how much it sucks to be sick. All you want to do is lie in bed, drinking 7-up and watching movies or sleeping. There isn't anything that can get you out of bed. Except for having organic chemistry, a biology test, and a test that 30% is participation. There's not really the I-can-miss-class-because-I-have-Crohn's situation going on here.

I know a lot of people that take advantage of anytime they are "sick" to miss class. People with diseases especially have an excuse because they can't help it. Frankly, I don't live by that rule. If I'm not down and out on the bathroom floor, I will make it to class. My professors know that on a bad day I won't be participating, but they know that I will not be using my disease as an excuse. I've found that you will be respected a lot more when they see that you are making an effort to be places even when most people would have called it quits. IBD has made me so much stronger, that I know I can make it to class even when I feel like a bus has run me over.

I'm trying to think about what my overall message for this post would be. It isn't that you should go to class every time that you feel awful, because sometimes that just isn't possible. I guess it's that we are a strong people. We know what it's like to be in such immense pain and have accidents and not be able to eat the things we want. I think it's important to not say that you are going to skip something because it's okay since you have a disease. You have to fight and do everything that you can, because otherwise you'll be stuck in your bed everyday, and that doesn't sound like fun.

One thing I've found helpful, is keeping in contact with my professors and my support advisor about my disease. They know when I'm not feeling well, and they work with me to make sure I'm still doing everything to get the best education possible.

You can do everything any non-digestively challenged person can, you just have to fight a bit more.

Thankful for Crohn's

I know it's been pretty much forever since I've last posted, but with finals coming up I am so incredibly busy.

With Thanksgiving come (and gone), I felt it time to really think about how thankful I am to have Crohn's disease. It's not that IBD is rainbows and unicorns, but I've spent so much time in the recent past being angry about my never-ending flares to really remember why I love having this disease.

Because of my Crohn's, I've been able to enjoy life more.

Since the start of my clinical trial, my CDAI (Crohn's disease activity index) has reduced dramatically, not to a remission, but I have quite a bit less pain. The other day, I had one formed bowel movement and almost no pain. It was such a glorious day, and I fully enjoyed it.

That day made me realize that, without my Crohn's, I would not have been able to appreciate feeling healthy and well. I will never take a day that I am able to get out of bed and do everything I want for granted. I think that's pretty darn cool. Each day that I wake up in little-to-no pain, I feel fantastic.

Even when I'm feeling fairly ill, I enjoy everything I do more, because I know I'm going to pay for it later. Eating a greasy pizza, or popcorn is absolutely amazing, because it has to be, or it wouldn't be worth putting myself through the after-pain.

I realize it sounds silly to be thankful for pain and accidents, but they help put life into perspective. Today, I was so thankful to not have to rush to go to the bathroom. I casually waited until it was a convenient time, and then walked over. Best bathroom time in a long time. Most people just go to the bathroom, and that's it. I'm so happy I have the chance to be grateful about making it on time.

For all those people who feel sorry for us with a chronic disease, I feel sorry that you probably don't have the chance to appreciate some of the simplest things in life.
Crohn's disease is an awesome disease :)