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.

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.



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.

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!