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.

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!

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.

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?

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.

Between a flare and remission

I know it's been awhile since I've written, but I've been trying to get back into a routine with new classes, work schedule, etc.

It's always difficult to know how I should be feeling, and whether or not I should be satisfied with how I'm feeling. Since I've been trying to eat healthier, I go to the bathroom less and I have less pain, but I am nowhere near being symptom free. Sometimes I have random Crohn's pains or I feel sick to my stomach.

Remembering where I was even two months ago, I want to say that I'm in a remission. I feel so much better than I did. However, I have those times where I spend 10 minutes in the bathroom, or I have an attack, and it makes me feel that I should be doing something so I don't have them anymore. At my last appointment, I had had very few symptoms in the last couple days, and my nurse was visibly relieved. We had been talking about what I could do to feel better and she had said there really weren't any other options.

Because there's really no other options (either a new clinical trial or surgery), am I stuck at a semi-remission being a full remission for me? When things are bad I remember that there are other people out there who have it worse than me. Some people have several surgeries right after another. Others can't work or eat through a feeding tube. Then I look at other people who can go out and do whatever they want because they have no symptoms. When you're in the middle, are you a complainer for wanting to have less symptoms?

I've personally decided to stop trying to find some magical cure. I was feeling better Crohn's-wise on the Diet Evolution, but I was mentally unsettled by only eating salads for every meal. I have backed off from unhealthy foods, but I allow myself to eat something "unhealthy" (a cookie or piece of bread) every day or so because I'm not a rabbit.

Maybe I should be grateful that I'm able to go about my daily life, but it'd be nice to have a less personal relationship with all of the college bathrooms.

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.

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.

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 :)

 

 

Accepting Your Disease

Accepting the fact that you have a chronic disease is a hard pill to swallow, especially when that pill causes unendurable pain and sadness. Although I was diagnosed almost 10 years ago with Crohn's disease, I still find myself getting very angry or depressed, especially during times of flares.

I've always tried to see the positive side of IBD; my best friends were met through Camp Oasis or other IBD conferences, I've discovered my passion for the medicinal field, and I've become a stronger person because I have needed to deal with a terrible chronic illness since I was a child. However, that doesn't mean I'm always super ecstatic that I have this disease that's attacking my digestive system.

The most difficult times for me have been when I haven't been able to eat what I want, or had to completely sit out of something because I couldn't push myself any farther. Today, with health care such a hot topic, I worry about being able to fulfill my dreams because I will need to find a way to pay for expensive healthcare, and the rising cost of medical bills. I see other people not needing to worry about what they do to their bodies, and I wish that I could have just a few less worries in my life.

Every once in awhile I hit this roadblock, in which I see my entire future before my eyes, painful day after painful day. I'll never be able to eat without worrying about whether or not I've just given myself some extra hours of pain. I see a life in which I will be worried about passing on my Crohn's to my children; in which case I would feel so incredibly guilty for causing them the same pain and suffering I go through on a daily basis.
There are so many points in my life where I have cried and cried, thinking that life cannot possibly be fair. Why was I chosen for this disease? What did I do to deserve this?

Recently, I have learned that realized that things happen for a reason. I may not like the fact that I can't always do the things I want, but I pray and ask God for the patience to understand that life is not meant to always go the way I want. I've also definitely learned to slow life down. I do not need to get the best grade on every test, be the fastest, be in the most activities.

All I need to be... is me.

Crohn's disease, although it does not define me, is such an integral part of my being. I am who I am because I have had tribulations. I think the way I do because I know what it's like to be picked on because  my medications have made me fat or slow. I know what it's like to feel all alone. Crohn's disease has made me empathetic to those who suffer and it makes me so happy to be able to help other people. Although I still have many hurdles on my road to acceptance, I know that I am okay with who I am, and that has brought me closer to my goal.