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.

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?

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.

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.



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.

My wish

Hey everyone - it's been a hectic time so I haven't had time to post lately. I originally started the blog to give advice to others, but lately it has become my place to vent about my feelings about IBD. I've gotten a lot of e-mails from people saying that they feel the same way, so I want everyone to know I really appreciate that you read this and care enough to reach out to me.

I really wanted to write about something happier - that I'm finally out of my rut and enjoying the life of a Crohnie again. As involved as I'm getting in the IBD community (through the council and MN Chapter), I feel like the past me would be super excited about everything I'm doing and happy that I have Crohn's because of all of these opportunities.

Lately, however, it's been so much more difficult. St. Olaf is always questioning, "What do you want to do with your life?" I've always replied that I want to be a doctor in a small town and just live a quiet life. I've realized that I've been lying to myself.

My dreams are to travel the world. I want to go to third world countries and hand out medical supplies. I want to see the wonders of the world. I want to swim in all of the oceans and seas (except for the really cold ones... maybe them as well). These are what I dream about all the time, and St. Olaf says these dreams are possible.

My Crohn's tells me otherwise.

My Crohn's says that I'm going to have pain after I eat, that I'm going to be tired all the time, and that I'm going to spend a good portion of my day in the bathroom. I know I should be grateful; I don't go to the emergency room as often and I don't absolutely need surgery. Doctors are always saying that people with IBD are not going to feel as well as they did before, even when they are in "remission."

I'm supposed to be okay that my disease doesn't allow me to travel? I'm supposed to be okay that I have to drive to Mayo every other week so I can help this big pharmaceutical company get their medication out on the market? Which they'll charge probably more than $10,000 an injection. I want to know why having a disease means that I have to accept these limitations as though it's a part of life.

I absolutely love camp and my Crohnies, but it is so so hard to know that I will probably never be able to fulfill my dreams because it just isn't practical, that I will have to always live near enough to a large clinic that will have all of the latest drugs for me to be on. I know there are tons of people that have it worse than me, but seeing my friends doing a semester abroad or doing research in another country is so hard. Several of the chemistry professors told me that they would be more than happy to give me letters of recommendation for any program that I want to apply to, but I had to tell them that I can't because of my Crohn's.
I know someday this will all work out, but it's so hard being at this point in my life.



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.

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.

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.

Troubles and Titterings of a Trial

I was originally going to add this to my post on my first infusion, but I figured not everyone would want to read my personal experience. These are my worries about going on a clinical trial and how I assayed those fears.

I was definitely a clinical trial hater. Why would I want to put something in my body that isn't even FDA approved? Who knew if I was going to get some awful side effect? I thought I was going to be treated as a number and a lab rat to the pharmaceutical companies.

Here is a list of my fears, and how I got past them:

1. I'm just a number to the company funding this project, how do I know it's in my best interest?

-This was the point where I knew I had to trust my doctor. He gave me his honest opinion that this was my best option, I did my own research, and it seems like this may actually work.-

2. If this isn't FDA approved, how do I know this won't give me really awful side effects?

-I was totally freaked out by the thought of getting cancer from this medicine. My doctor explained the process of clinical trials. First, they go through Phase 1 in which they inject the drug into humans and see whether or not they actually stay in the blood and will do what they are meant to do. If it actually works, it goes to Phase 2. There, they test for side effects. They see if anything awful crops up. Although I wondered about long-term side effects, what research has shown us so far, is that side effects in medicine are not very different in 20 years than they are in the first 5. Finally, if they pass these two phases, they make it to Phase 3. Here is where they see if the drug actually helps the patients. The patients fill out paperwork and possibly a journal which gives a CDAI (Crohn's disease Activity Index). A certain dosage is decided, either one dose or something else determined by the company, and administered to the patients. Depending on the time frame in which the drug is again administered, a new CDAI is taken to see if the quality of life is actually improving. They are testing to see if the drug can bring a patient to remission. A part of Phase 3 which only occurs if patients' CDAI is lowered is an extended Phase 3 which sees if the drug can keep a patient in remission. If the drug isn't quite FDA approved, but the company decides to keep it in study, the drug enters a Phase 4 which could last up to 4 years or longer.

Basically - a drug has to be very safe in order ot enter Phase 3.-

3. It doesn't really fit in my schedule, can that be changed?

-Unfortunately (Actually... fortunately), clinical trials are very strictly monitered by the FDA. They have to be extremely regimented or people can go to jail. You have to either make it work, or the clinical trial isn't your option. You have to decide if it's right for you.-

 

If you have any other questions or doubts about going on a clinical trial - send an e-mail or post a comment and I will help you the best I can!