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

Thursday, January 31, 2013

What to do when medicine fails

Hey everyone! January flew by. J-term has ended and I am currently relaxing at home, about ready to fill out a facilitator training application so I can run an official CCFA support group. Crazy stuff.
I've definitely learned that one needs time for relaxation. Lately I've been so worried about getting everything done for the NCCL (national council of collegiate leaders) and the support group on campus and school work, that I haven't taken a lot of time for myself.
My Crohn's has seen the need to show itself again. I find myself running to the bathroom and lying awake at night because the pain makes it difficult to fall asleep. I felt so well after starting this clinical trial - I don't understand why all my syptoms are coming back. After calling Mayo because I was running a temperature, they talked about the possibility of hospitalizing me. I don't about other organic chemistry students, but I don't have the time to sit around in the hospital trying to get better.
So what do I do?
I've never understood why medications don't work for me that work for countless other people. Maybe I have a really strange form of IBD. I can eat raw vegetables, but cooked ones won't be digested. It's as though my body feels the need to be unique.
The only thing it seems like I can do now is rely on natural treatments and diet. I had given up on the no grain, no dairy, no sugar, no fruit diet because I felt so depressed eating on it, but it seems like that's my best shot. For Lent, it looks like that will be my devotion - trying to get healthy again.
Sometimes I wonder what it would be like to  have a normal digestive tract. Food would be fantastic, but I would probably weigh 50 pounds more. I would be able to sleep more, but I would probably get less done because I'd be sleeping.
I never was a believer in holistic type things or diets - they always seemed like a bit of hogwash. Maybe in a month or two from now I will actually reach remission, and I will be able to tell everyone that diet is what put my severe Crohn's in remission - not the fancy medicines that my brilliant doctor said would make me feel better.

Monday, January 21, 2013

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.

Sunday, January 13, 2013

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.

Thursday, January 3, 2013

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!