Beating the Crohn's

Starting to run was probably the hardest thing I ever did. I got sick all the time and felt like Crohn's was laughing at me the entire way - telling me that I was never going to be able to run like everyone else. All the times I pooped my pants or had to squat next to a tree, hoping that no one would run by and see, seemed as though running was going to be a continuous reminder that my intestines hate me.

The last two days have started me on a race that no longer allows Crohn's to hold me back. For the first time ever, I have not needed to race to find a suitable place to poop for more than one run in a row. Running actually felt good. 

There was no pain, no regret, no wanting to give up.

There was just the trail and myself.

Crohn's doesn't have to be a pain in the butt when in comes to running. Yes, it has taken me nine months of experimenting with different food and pushing myself to the point of throwing up, but I will beat Crohn's, and it is never going to take me down the road of wanting to give up.

 

The challenge for everyone else is simple:

Don't give up on your dreams. No matter how big, small, or seemingly impossible. You can and will, eventually, complete them. Who cares if it takes a few years? All that matters is that nothing can stop you from being everything you want.

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.

Winter Blues

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

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

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

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

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

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

Being an Advocate

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

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

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

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

New Year's Resolutions

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

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

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

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

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

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

Following the Diet

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

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

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

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

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

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

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

 

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

 

Merry Christmas!

A Cure/Cause of IBD?

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

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

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

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

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

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

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

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

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

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

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

 

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

 

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

Fruits

Corn

Grains

Dairy products from the U.S.

Sugar

 

What you can eat:

Nuts

Green, leafy vegetables

Meats (preferably organic)

French cheese or milk

Sheep and goat milk/cheese

 

If you have questions, feel free to message me!

Uncertainties of a Clinical Trial

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

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

Being a Crohnie College Student

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

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

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

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

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

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

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

Thankful for Crohn's

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

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

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

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

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

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

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

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

 

 

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.

Telling Your Significant Other

During our IBD talk at Camp Oasis, the teenage girls were asked to talk about how and when they would tell their significant other about their disease. I thought this was a really interesting topic as some people are super open, and others don't tell many people. This can be a delicate subject, and it's up to you when you tell him/her about your IBD.

If your SO didn't know before you started dating, how do you start up the conversation about IBD? "I'm really enjoying this salad. By the way, it may give me uncontrollable diarrhea." Not exactly an easy topic to broach.

The perfect time to break the news is different for each relationship. If you start out strong, it may be easier to get it out in the open right away (probably not during a meal). Honestly, if your SO can't handle the fact that you have a digestive disease and thinks it's gross, he/she is so not worth your time. Telling your SO early on means that you can slowly bring up other topics about it - food, bathroom issues, doctor appointments, etc.

However, if you don't feel comfortable telling your SO right away about your IBD, that's fine too. It may be better to tell them before things get too serious - some people are jerks and it's easier to get hurt if you're deep into the relationship. As well, it may be difficult to explain why you have to run to the bathroom several times or have to cancel on several dates. Complete honesty is best to keep relationships healthy.

I've found it to be so much easier when my guy knows about my Crohn's. They understand why I can't eat certain foods and know that I'm not being a party pooper when I say I don't feel like going out. Plus, many people will be truly curious about the disease and want to know more. As great as Crohnies are, sometimes it's nice to talk to someone without IBD just to get out your frustrations.

Telling someone that you have IBD can be a truly terrifying ordeal, but so rewarding as well. Most people will be on your side and so eager to help you fight your battles. Don't be too scared - they care more than you think.

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.

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.

 
 

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.

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.