Don't let your Crohn's win. Beat the Crohn's.

Tuesday, October 30, 2012

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!

Ustekinumab.. First Infusion

This blog is about my clinical trial experience thus far…
 The big day has come and gone. I finally had my first infusion of the clinical trial – Ustekinumab.
My first part of the day consisted of the finalities of making sure I “pass” and am indeed sick enough for the trial… I held my breath a bit while the nurse tallied my points…
I passed! (Is this a good thing I wonder?)
They sent me to the clinical research center where the nurses follow a recipe (as they said, because they work with 600 clinical studies) as to how I was supposed to be treated. I received an hour’s worth of infusion and then had to wait an hour so they could test my blood levels to make sure the drug was actually staying in my system and doing what it’s supposed to do. This is actually a really fascinating development in the medical field. Instead of giving a dosage based on age or weight, drug companies and doctors are looking at blood levels to give individual dosages to patients. Although they aren’t doing that in the trial, it’s great to know they might be able to individualize our care more.
The trial was super easy – all I had to do was lie in bed, watch t.v., and ask for any food that I wanted. Pretty sweet deal. It brought me back to my days of Remicade – being in high school and missing a whole day to pig out and sleep in the hospital – it’s weird to think about how long ago that was.
I was super hopeful about this medication. I actually feel way worse today than I had before, but I’m still hoping that maybe my body is just getting used to having a new drug in my system. This one has to work, it just does. I don’t care what the Universe says, it better listen to what I say.

Thursday, October 25, 2012

The Power of Friendship

I know it's been a long time since I've written, but mid-terms and a broken laptop tend to have that effect.
I want to give a big shout-out/thanks to all of those people who don't have IBD, but have always been there for me. I know I talk a lot about the support I gain from Crohnies, but I get so much from the non-digestively challenged people as well. I want to dedicate a post to those people.
This blog is inspired by a non-Crohnie who really gave me hope and inspired me today; she reminded me that people are fighting for me, and not just those with IBD. Friendship is so important to those of us with a chronic illness. I know I couldn't do any of this on my own, but my family, friends, and crohnies have been there with me every step of the way.
Two weeks ago I was informed that I have three options (from most conservative to least):
  1. Go on a combination of medications that I've already been on. One caused damage to my liver when it was at a high enough dosage to help my Crohn's. The other made me throw up for days after injecting myself. My doctor told me my best chance of this combo working was 1/10.
  2. Try a drug that is different from others I've been on. It is an injection that targets an alpha and beta blocker. There is a risk of brain infection, but only if you've been exposed to the JC Virus (which is a 1/2 chance anyone has been). This sounded like a good option... until I was told that in this medical period, no clinical trial will accept you. There's still a risk of developing a brain infection after you stop the drug, and they don't want that risk. Because I haven't lasted long on any medication, I would have risked alienating myself from potential drugs.
  3. Starting a clinical trial. The one I chose is fairly safe as it is already FDA approved for plaque psoriasis. It's double blind, so I won't know if I'm getting the drug, and we don't know how my body will react to it. It targests two IL's (I don't have the list with me since I'm in the computer lab. It's 2/3: 12, 17, 23) which will hopefully prevent the formation of Thm 17 which they believe causes inflammation.
  4. Surgery. Not a good option. Ever.
I am ready for a break.
A break from medications making me sick, giving me other diseases, not working. All I want is to not have to worry about having an accident during class, or to not have a body filled with aches and pains.
All of this gets me down so often. However, I have such an amazing support group that always pull me back up. They don't make fun of me for spending a copious amount of time in the bathroom... sometimes they do, but they do in a way that doesn't make me feel belittled.
Crohn's may make my life miserable, but I have friends that will be there for me, no matter what, and I know that I can do anything with their support.

Thursday, October 11, 2012

Everyone Poops

For those of you who have been following my facebook statuses, you know that I recently started an IBD Support Group on campus. Last night was our first meeting, and it was fantastic! It was like bringing the awesomeness of Camp Oasis to St. Olaf. That's what has been missing so far in my college experience, having people that I can talk to about my IBD that will totally understand what I go through. I'm so excited for the future of this group and hopefully spreading awareness within the St. Olaf community about these diseases.
I love seeing how relieved new Crohnies are when they finally understand that there are others out there that understand what they're dealing with. One girl had e-mailed me prior to the meeting saying how she had been looking for support since she was diagnosed last school year. Although I'm totally comfortable talking about my poop and intestines to non-IBD'ers, most people, especially recently diagnosed, aren't quite comfortable bringing up their disease with other people.
One of my main goals with this support group is to help everyone feel able to talk about their disease. It was so great at Camp Oasis talking about IBD issues all the time. Our campers were amazed at first, even though they have it as well, but they eventually started talking about it too. The only way we can get the word out, is by doing it ourselves. There's no reason to be shy.
Everyone poops.
That's right. We shouldn't be embarrassed just because our poop is more interesting than the average person's. By us all giving support to each other, and wearing awesome shirts to get conversations going, hopefully more people will learn about IBD, which can lead to more money towards research. Plus, being able to talk about your disease helps you not go crazy over all the things we have to deal with. Plus, people are usually interested in learning about new diseases.
Today I am wearing my purple "We've got guts" shirt, and someone asked about it while I was in the bookstore; they thought I played rugby or something. I told him about IBD, and he was fascinated! We talked for a half hour about symptoms, medications, the history of IBD, and my own personal experience.
We are the advocates of IBD - average, everyday people - not a celebrity on tv. We must speak out.

Tuesday, October 9, 2012

I Totally Understand...

I never thought I'd do a post on the stupid sayings of non-IBD'ers, but I recently was told by someone that they understood exactly what I was going through, because he once dated a girl with Crohn's. So, here are some stupid things people have said to me, and how I would like to respond.
  • So that means you can't poop... which means you're going to explode with poop!
    • Yes, because my digestive system is attacking my intestines, they don't work at all. Better stay away or my feces will explode all over you! I'm not really sure what this guy was thinking.
  • Oh! My friend was on this medication and they're cured! I'll give you their information so you can try
    • So first off, Crohn's disease can't be cured. I'm not sure if he got his information incorrectly or his friend just doesn't know a lot about IBD. Either way, you're not a doctor, don't tell me what I should be doing to treat my individual disease. I've been living with it a lot longer than you've known your friend. Sure, give me the information, but don't tell me I should do it so I can be "cured."
  • Think positively.
    • Because that's going to help.
    • Thinking happy thoughts... I'm cured.
  • I understand; I once knew someone with that.
    • You're right, knowing someone with a disease makes you understand what I go through every day. My mom even admits that she doesn't know what I'm going through, and she knows best, other than my Crohnies. Unless the person is giving you a blow-by-blow of what's going on, you have no idea.
  • You don't look sick and you never complain, you must be doing really well.
    • If I told you how crappy I feel all the time, you wouldn't want to know me! If I really told you how I felt, you'd be hearing about bloody diarrhea, my nausea, and pain every second of every day. Just because you see me the times that I'm well enough to go out and do something, doesn't mean that I'm all of the sudden feeling all better.
  • Can I catch that?
    • Yes, you better stay far away from me.
  • At least it's not cancer.
    • You're right, I should be grateful that I only have a chronic disease that will cause me endless pain for the rest of my life.
  • Cool! So that means you'll be able to stay skinny!
    • Yes! You see, I actually sold my soul to the devil; constant pain for never being morbidly obese. Fair trade I think.
I really am grateful that my professors, family, and friends are really supportive, but some things I have been told are absolutely ridiculous.

Sunday, October 7, 2012

A Day Without Pain

When people ask me what I wish for the most, I answer with getting in to medical school, or to see the world. That is a lie. What I wish for the most, is to remember what it's like to be healthy - to have another day without pain - because I've forgotten what that feels like.
I have had daily pain since August of 2011. I had had three amazing months of no medicine and no pain. Up until then, I hadn't gone more than a day or two without pain, vomiting, or diarrhea. I look at my life, and I realize that I've spent about half of my life in pain. That's no way to live a life.

My greatest wish:
To be able to exercise more than ten minutes without terrible pain that I have to push through or diarrhea.
To be able to sleep through the night without waking up because the pain is too great or because I urgently need to use the restroom.
To be able to walk without the up-and-down movement causing me abdominal pain.
To not be tired all the time.
To be able to eat all the popcorn I want, without bloody diarrhea.
To not have daily headaches and joint pain.

I look at my list of what I wish for most, and I don't feel like they are outrageous requests. I see my peers running around and laughing and putting anything into their bodies without needing to worry about how that'll feel when digesting, and all I want is to have a day of remembrance, of what it's like to be digestively normal. Being diagnosed when I was ten means there was a lot I didn't get to experience "normally." I never regret having Crohn's disease. I'm so fortunate for everything it's given me, but I wish that living with it didn't have to be so hard. I want to hang out with friends and have fun, but I have such a hard time doing homework for long periods of time because of pain can be so disrupting, that I have no extra time.
These last few months have been incredibly painful for me emotionally. I stopped responding to my medication. Most people wouldn't think that's a big deal, which normally it isn't, but I've stopped responding to all the medications out there. I thought I could control my disease with a strict diet and lifestyle (which consists of me doing nothing), but even by not having a life, I'm still stuck with the relentless pain. People look at me and don't realize what I have to deal with every minute of every day, but I get so tired of it.

All I ask for, is a day without pain.