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

Sunday, December 23, 2012

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!

Friday, December 21, 2012

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:
Dairy products from the U.S.
What you can eat:
Green, leafy vegetables
Meats (preferably organic)
French cheese or milk
Sheep and goat milk/cheese
If you have questions, feel free to message me!

Sunday, December 9, 2012

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.

Friday, November 30, 2012

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.

Thursday, November 29, 2012

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 :)

Thursday, November 8, 2012

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.

Sunday, November 4, 2012

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.

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.

Sunday, September 30, 2012

Mental Health

It's been awhile since I last posted, but I've been fairly swamped.
This post comes from the fact that I am on a mental health weekend. Instead of doing tons of studying and working on everything I should be doing, I went home and had lots of fun with my family. My aunt came home from North Dakota and we've all been having a blast.
We go through a lot of crap (yes... pun intended), so sometimes you need to just sit back and relax. As much as I really thought I should just spend the weekend studying, I knew that without a break, I would go crazy.
So many of us deal with chronic depression; don't let yourself go too far. Take time when you need it, even if it's small. I've gone too far too many times that I never want to be there again. Find out what relaxes you the most and maybe take a half hour to do that everyday. If you don't feel like you have time during the week, take an hour or so on the weekend to just have time for you. Go somewhere or do something. You can watch a movie anytime, make sure it's something special.
I'll do a different post sometime on a more serious note of mental health. I do actually need to get some studying done today.

Sunday, September 23, 2012

Homework? But I have Crohn's...

The inspiration for this post comes from me feeling sick and really not being able to get my work done. College is a terrible time to feel sick because all of our professors expect us to be able to function as well as digestively unchallenged people. Having an invisible disease sucks because they don't think of us as being sick.
Although I'm in some very challenging courses (*cough* organic chemistry *cough*), I've learned that if I'm sick, I'm not going to be able to do my work. I've also learned that it's okay to take breaks, as long as they're necessary and you know that you still have to get your work done eventually. Taking an hour or two break to have "IBD time" doesn't mean that you're a bad student, it just means you realize your limitations.
I haven't had a whole lot of friend time this semester between all my classes and Crohn's, but this Friday night I was able to hang out in my friend's room while doing my Orgo and Spanish homework. Yay! That's something else I've found helpful. When I'm feeling good enough, I multi-task. Although it's not super fun, it was great that I did my homework Friday night because today I don't feel well enough to do my best.
With IBD, doing your homework ahead of time, rather than last minute, has been my life saver. Rather than piling on stress because I only have a little bit of time left before an assignment is due, I do it right away. Less stress (which helps the Crohn's), and I can take a break without feeling bad because I'll already have done what's due.
I haven't had to do this so far, but I figure I may need to at some point: if you can't get an assignment done, talk to your professor right away (assuming that they know about your disease). Hopefully they'll be understanding and give you an extension.
Alas... a paper is due in a little over a week so I should probably finish my first draft... Ciao!

Thursday, September 20, 2012

Crohnies United

One of my most important discoveries throughout the last 9 years is the incredible support I've received from my Crohnies. I wouldn't be who I am today without them.
I know there are some people with IBD who don't think the IBD community is for them. However, I would have to disagree. By getting to know others with the same disease and learning about their own fight, you can learn to appreciate your disease. Definitely search for other Crohnies on campus. This year I was put into contact with a first-year Crohnie, and we have a blast talking about poop and other Crohnie-related things. It's so freeing to have someone with whom you can share all the fears and weird stories that you can't tell anyone else. All of my friends know I'm very open about my disease, but there are things that a Crohnie really can't explain to somebody else (the fears of medications, the humiliating moments that you just can't admit to, etc.). Opening up with another IBD'er even helps you be able to talk to non digestively challenged people about your disease because you learn how to talk about it with other people.
My Crohnie on campus and I talk about all things IBD when we're together, and when we parted after lunch, we decided that we need to have some non Crohnie talk at some point. You become friends with IBD'ers because of the disease, but it becomes something even more. These are the people that can actually understand every piece of you, even the ones you hide from the world.
Basically, Crohnies are the best thing that's ever happened to me, and I think life is so much easier after you find some. Talk to your advisor, academic or support, and find out if there's already a support group on campus or someone you can talk to. Almost every Crohnie I found on campus was through advisors. I also cannot stress the amazing-ness of Camp Oasis (a.k.a. Poop Camp). That place has become home for so many people. It's the one place where we aren't special or different. We're just us.

Tuesday, September 18, 2012

Fighting for the Health Care You Deserve

This post is going to be a bit more personal as it comes directly from my experiences this last month. There are times we are not given the health care that we deserve. (This is not always true. There are very many wonderful doctors and nurses who do way more than necessary in order to ensure we feel well treated.) However, people with chronic diseases must be ready to fight with insurances, clinics, and doctors about payment and treatment.
The last month I have been fighting with Mayo Clinic in order to get medicine. I stopped responding to my medication towards the end of July and my doctor had me stop doing my injections. At that time, we talked about several different clinical trials and decided on the one that seemed to fit me best, and was safest. However, a week before school started (so one of the last weeks of August), a nurse called telling me I couldn't go on this trial, although I had spent the last couple weeks assuming I was. She informed me about a different clinical trial, Ustekinumab, that was already FDA approved as Stelara for plaque psoriasis, saying that it was different from the anti-TNF medications (of which I have stopped responding to each and had strong dermatological reactions). I was really excited that there was something new out there. She told me I would only be able to have appointments in the morning because my doctor doesn't usually see patients in the afternoons (although I have during a different clinical trial). This didn't work around my schedule because I would have to miss roughly 6-8 of one of my classes (which I was told by the school I would probably have to drop it if I missed that many - it's a very prestigious, discussion based class). She said she would call back the next week and let me know what my doctor said. The day before classes started, she called and we started setting up appointments. When she mentioned that it would be in the morning, I reminded her that I couldn't do mornings. She responded by saying my doctor couldn't see me in the mornings. I asked, "Even after you explained my situation?" She had never asked him. An hour before my first class she called back, and I was told that Mayo wouldn't accommodate me. I was, instead, given a URL and told I could try to find other clinical studies and could see if another clinic could help.
At this point, I was flabbergasted. Mayo, supposedly the best clinic in the U.S., was refusing not only to accommodate me by having me see one of their other 30 gastroenterologists, but was unwilling to help me find a different clinic. Sayonara!
I had to make phone call after phone call, to different nurses and the appointment office, trying to appeal this and find help. Each one told me they couldn't do anything. I even e-mailed my doctor, with the only response being from the same nurse as before saying I could only come in the mornings.
I looked at the website given to me, but the only clinical trial I knew about was only being done at Mayo. As a last ditch effort, I called the patient affairs office seeing if anyone at Mayo would help me, or at least get me transferred to a different clinic because it's difficult to get into a big clinic without a refferal. After explaining my whole situation, I finally got a call back about a half hour ago explaining that I could come in the afternoons (except for the two days of infusion), and the nurse told the woman handling my case that  of course I could come in the afternoons. Tomorrow I get to call the nurse back and actually set the appointments up. Urgghh...
I guess the whole moral of this story is that you may have to spend many hours at the phone, but fight for your rights as a patient. You know what you need. Although you shouldn't have to deal with all this extra crap (Poop always makes everything funnier), it's another part of our disease.

Sunday, September 16, 2012


Hey guys... Another day, another post. This idea actually came from a Crohnie I just met on campus. He was recently diagnosed and mentioned how he wished that more IBD'ers posted who didn't have such a hard time with their disease or medications. This post will be dedicated to good situations people with IBD are in and the aspects of this disease that are more positive.
First order of business: not everyone with IBD is constantly in a flare-up and has just as many good days as bad. Several of my friends from poop camp (ahem.. Camp Oasis) have never had a flare-up since their diagnosis (which for some was as great as 7 years ago). Having IBD doesn't mean you're always going to be running to the bathroom or having a super strict diet. There are people my family knows with IBD and they go out all the time and are only on a couple medications, without having any issues. Some people find a diet that really works for them and they aren't on any medications. Natural treatments may work for others. IBD is such an individual disease that you cannot judge your own by the scariness that's out in cyberspace. Find what works for you. You should definitely do research on drugs and diets that you're considering going on, but don't let a couple of posts about how awful they were deter from trying them.
IBD doesn't have to be a socially awkward disease about which people only whisper. Be loud and proud. I attended Camp Oasis for seven years as a camper and this last summer I was able to attend as a counselor. My best friends in the whole world are these people with the same disease as me. If you go out looking for Crohnies and start talking to them, you'll realize that they are the one group of people that can truly understand you because they understand the deepest part of you that no one else will ever be able to penetrate. I've laughed with them, cried with them, and gone to the hospital to talk about how much IBD can suck, but in the end, I wouldn't give it up for anything in the world. I've made it my mission to not let Crohn's take over my life. I've attended seminars, talked on panels, raised money for awareness; I am in control of my disease, not the other way around. As I was telling my fellow Crohnie, IBD is the best because we get to make poop jokes (which are the best!) and talk about our intestines like it's no big deal. I would choose Crohn's over any other disease.

Friday, September 14, 2012

Having a Social Life Part 2

Here's an addition to the last post about having a social life in college while also having IBD.
You're finally caught up enough with homework that you actually get a night off! Right? Wrong. Your IBD has decided to be all sorts of fun and keep you in the bathroom all night. How do you handle situations like this? You could go out and hope no accidents could occur or you could stay in, wishing you were out with your friends and dreading the next day when all they can talk about is the fun that occurred that night.
This is definitely a judgement call. During college you need to be able to understand your body well enough to know how much you can push yourself. Sometimes you might only have a small spurt of diarrhea, but can join your friends afterwards. This is another example of why you should be open about your IBD during college. If your friends know what's going on with your health, they'll be less likely to bug you about why you don't go out with them every weekend.
If you've made the call that there is no way you can make it through the night without possible accidents and are spending the night in, enjoy it! Don't make yourself do a lot of work. Relax, and feel better soon.
If you think you can go out and have some fun, remember not to go too crazy. As much as we like to not limit ourselves because of our disease, it's still necessary to watch what you put into your body and how you treat yourself. If you aren't comfortable with all of your friends knowing about your IBD, make sure you have one good friend along who knows so they can help you in case you need to find a private room.
Along with treating your body well comes along the responsibility of whether or not you drink. If you're on medications in which they specifically tell you not to drink, don't do it. Many medications are super harsh on your body, and adding alcohol to the mix could just complicate your health even further. If you're not on medications that warn you about drinking, make sure you know your body well enough before you start drinking. Know your limit and try drinking in small amounts before you go crazy so you know what you can handle.
Having IBD doesn't have to stop you from going out and having fun, but you have to be more responsible than all of the "normal" people out there.

Thursday, September 13, 2012

Having a Social Life

I'm so excited to actually be blogging about IBD and college. There were a lot of things I've had to find out the hard way, so I'm hoping someone who reads this will find it helpful.
One thing I've learned: IBD does not equal social life in college. I know. Big shocker. IBD never flares when it's convenient. It waits until you're ready to study for that big exam or right before you're supposed to go out with all your friends. It's taken me awhile, but I'm starting to get the hang of formatting my college life around my disease.
Last year I felt as though I never had enough time to study, sleep, or hang out with my friends. This year, I'm really trying to focus on my grades and staying healthy, which doesn't leave a whole lot of room for hanging out with the big group. In the end, that's the decision I've had to make. There's going to be times where I can't get out of bed and won't be able to do anything except sleep or watch a movie. I'm not going to a top-notch school to hang out with people whenever I feel healthy; I came for an education.
Unfortunately, IBD doesn't leave us with many "perfect" options. We have to make choices as to what's most important to us. You can still go out and have a good time, you just have to plan more than a non-Crohnie does.

Tuesday, September 11, 2012

Choosing a College

I'm going to start this blog with, what I hope, are helpful tips for in college. Feel free to let me know if there's anything you want to learn!
Choosing a college is important to anyone, but it can be more difficult with someone with IBD, depending on special needs that person has. Here are some things to look for when making that big decision:
1. Support System: Look into Academic Support Centers (they may be called something different at other colleges). When you talk with someone from admissions, be inquisitive. You have to live there the next 4+ years, make sure they'll be helping you. Academic Support advisors will go over accommadations that will be supplied to professors to let them know what you may need. If you feel uncomfortable talking with a professor, they can go with you. There's some really great advantages that can come along with IBD in college. I take my tests in other rooms, the professors all know that I'm just going to go to the bathroom when I leave the room, I can turn in homework late if I'm not feeling well, and I get to keep my car on campus. If the college doesn't have anything like this, or doesn't think IBD is something that needs Academic Support, it may not be the college for you.
2: Rooming: See if you can get special rooming, especially close to the bathroom. My freshman year I was as far from the bathroom as could be, although I specifically asked to be close, and it was awful. There were many accidents, which isn't fun your first year of college. You may be able to pick your room before everyone else, get a room close to a bathroom (insist on this), or even a private room.
3. Professors: Try talking with a professor if you can, and see what their reaction would be if they were to have you in their class. College is not the time to be shy about your IBD; professors will be more willing to help you if they know why you missed two lectures or wasn't able to turn your paper in on time.
4. Atmosphere: If you have a more severe disease, you may not want to go to a school that's known for it's wild parties, although college tends to be what you make of it, and you could try to make it quiet.
5. Medical Services: Make sure there's a hospital or something nearby in case of emergency. Maybe you'll never have to use it, but if you're in the middle of nowhere and begin a painful flare, it's not convenient to be an hour from the closest place. Check out nearby GI's. I was really fortunate that my perfect school is only one hour away from Mayo, where I started going my senior year. See if you like a GI in the area. If you don't find one you like, you then have to see if you'll be able to make appointments back home.
6. Growing Up: Unfortunately (or fortunately if you have helicopter parents), your parents won't be able to make all your appointments or keep track of medications for you anymore. Your last year at home you should really begin to be in charge of everything: from making appointments fit your schedule, to getting medicine when you need more, even to dealing with insurance. Better to figure out all this stuff when your parents are in the room than to be hours away from home with no idea how to make an appointment.
There's a lot more you're going to have to look into when you have IBD, but it's definitely worth it in the end.
Until next time...