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

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...