The physical and psychological toll of trying to maintain normal appearances during a flare is something that only people with IBD can really understand. However doing this while simultaneously trying to succeed academically and fit in socially can seem like an impossible task. Yes things can be really tough and seem unfair when you’re dealing with IBD but it should never be an excuse for moping, in my opinion. Try to shift the way you view all the pain, the fevers, the nausea and everything you’ve dealt with as something you not only endured but triumphed over. The time you have spent struggling to get through the day or going from medical procedure to procedure makes you ‘battle hardened,’ especially in comparison to the majority of your peers. The experiences you’ve had and the things you’ve seen are really tough, even for adults, but the good news is it makes college, and I can say now even medical school, look like nothing. Not only are you are strong enough to do college but you can also have fun and perform well in your classes. The mental strength you’ve built over the years, which you may not even realize you have, will help carry you through difficult situations.
Everyone with IBD is different and in hindsight I know I did a lot of things that were not healthy and probably prevented me from achieving remission. I am not pretending to be the definition of ‘healthy living’ in college but if you can take one bit of my advice to improve your quality of life as a college kid than this a success.
Managing low energy levels
My biggest challenge as an undergrad was fatigue. I used a three tiered approach to combat this…exercise, napping, and coffee. Here’s how and why.
- Exercise: I lifted weights every day for 1 hour without exception. Once I started cheer we practiced every weekday and I continued to lift weights voluntarily on weekends. You don’t necessarily have to lift weights but you should take FULL advantage of the facilities and classes colleges offer for free. Exercising boosts energy levels, speeds up your metabolism, decreases inflammation and is a healthy way to deal with stress. Yes, I would and do exercise with active Crohn’s disease. On days where I was feeling horrible I would just sit on a stationary bike and peddle for an hour or I would sit in the sauna. I am a believer that even getting out of bed for a time is better then laying in it all day. Consider group classes like yoga, barre, spin etc if you just don’t feel up to exercising on your own.
- Napping: I would nap during class which only worked because I’m not an ‘in class learner.’ Figure out your learning style and then make time for napping. You need to listen to your body, if you need sleep, do it. Without rest and a clear mind you will not be able to study and work efficiently.
- Coffee: Now everyone will be different in whether they can/cannot tolerate coffee, but I love it. I probably drank way too much but my motivation was just essentially survival. . . If I have symptoms-particularly fatigue, I’ll do what I need to do to get it done. That’s just me. Talk with your doctor about drinking coffee and see what they think.
Finding a balance between exercise, napping and some coffee (or tea) was really important for me to maintain energy levels. I probably drank too much coffee but I was compensating for studying through most nights.
Getting sick (non-GI)
If you are or will be on immunosuppression for IBD pay attention! College dorms are full of nasty stuff and I guarantee you that at some point you will catch the mysterious ‘dorm plague’. Dorm ‘plague’ season kicks off in late fall/early winter as the temperature drops and it works by one person you know getting sick and then the whole dorm starts dropping like flies. Yes, I am talking about that lightly but it is very true-it happens everywhere.
You need to take extra precautions to protect your health. Buy a small bottle of hand sanitizer (and use it), always wear flip flops in the showers and be careful even with the little things like clipping your nails and shaving. You do not want any kind of infection. You also should absolutely get the flu shot if you are not allergic (NEVER THE MIST [LIVE VACCINE] FOR PEOPLE ON IMMUNOSUPPRESION). They give the flu shots out like candy nowadays so go get it done at student health, probably for free. Remember that not only are you more susceptible to infection but if you do get one it can be more severe more quickly and take longer to heal.
If you feel yourself getting sick go get help from student health or call your internist (notice I didn’t say pediatrician) immediately. If you’re sick you need to communicate with your family and doctors ASAP so that they can consider adjusting your medication. I have another post where I discuss some infections that I got while on Humira and Remicade which turned into pretty serious things seemingly overnight.
DO NOT underestimate the immunosuppressive medication you are taking. For 3 horror stories while I was on Remicade/Humira during my sophomore year go read my post titled “College and Immunosuppression: Be Ye Forewarned!!!” Also for a more recent example while I was taking Cimizia and 6MP in medical school I got pneumonia (without ever noticing I was feeling sick) and landed in the emergency room for like 12 hours and fainting there.
ATP: Alcohol, Tobacco, Tattoos, Partying and Piercings
Don’t drink until you’re 21
Alcohol: Similarly to coffee I have seen people with Crohn’s be able to drink everything, nothing and others who fall somewhere in between. I’m a ‘somewhere in between’ guy and the only way to learn this is trial and error. For example, I cannot drink beer (even 1) without suffering the consequences the next day while I can have wine and liquor. Be careful with drinking-talk with your doctor.
Tattoos: These need to be done properly. No seedy or dirty looking studios or work-spaces. You need to tell the tattoo artist something like “hey I take medicine that makes it so I can get really sick really easily, would you mind just being super clean so I don’t get sick.” This is what I did and the guy was friendly, professional and we had a discussion about Crohn’s. He was more careful and sterile then many phlebotomists I have seen. That being said, we did have to remind him to change his gloves once after touching his phone. So, still be on guard. It may take a bit longer than expected for the tattoo to heal entirely so make sure you follow the care instructions you are given. This is a time when you are at higher risk for an infection so be hyper vigilant about cleanliness.
Tobacco: My disclaimer here is that I smoked cigarettes for a long time. I started when I was like 17 working construction. You need to quit. I smoked because I thought it helped me deal with Crohn’s. More specifically I just wanted to feel something other then constant pain. I now know that I was wrong and just making my disease worse. Please go read my journal club discussing smoking and Crohn’s. Quitting smoking decreases your risk of flaring by up to 65%, it’s pretty serious for your GI health. A lot of schools, and even insurance companies, have some really good free resources for helping students quit while they’re young. As for marijuana I never did it so I can’t really offer advice there. However I have discussed marijuana use in a journal club post and the bottom line is that it doesn’t seem to be anti-inflammatory (treating the IBD) instead it is having effects on the brain by THC mediated pathways.
Partying: It can be done but there will likely be a few limitations, at least there were for me. My low energy levels forced me to prioritize and pick my battles. For example, I could never party two nights in a row and I learned that I can never drink during the day because I get so tired. So if there are consecutive days of partying (as is common Thursday/Friday/Saturday) just pick one. I didn’t do Greek life so I do not know how rush works with regards to telling people in the fraternity so that they are aware of your situation. I would imagine you would tell them and that a precedent has been set for situation like this in each fraternity, I don’t know how those people work sorry. My mom always said it best, ”if you want to party, come home and party for free in the basement.” She’s right, don’t waste yours or your parent’s money partying and failing out of school. That’s not why you’re there.
Piercings: The days where you pierce each other’s ear with a needle and an apple or whatever were gone the day you starting medications for IBD. These need to be done in a sterile environment. Again, anything where you have a higher risk of infection needs to be viewed through the perspective of risk mitigation.
College can be stressful, especially if you push yourself academically. It helps to have or develop some productive ways of dealing with stress. My method was exercise which I used as like ‘therapy’ during college and I highly recommend it to anyone with IBD. Another fun thing that I liked was doing intramurals to have some fun. There are very competitive teams and others that are more social and fun. They’re a minimal time commitment and should be helpful to get your mind off stress, keep you moving, and interacting with people who enjoy similar activities to you. Clubs are another perfect example of this kind of thing. Its much healthier, in my opinion, to push yourself to join something then to just stay cooped up in the dorm.
Roommates: To Tell Or Not To Tell
Personally, I think that telling at least your roommates that you have IBD is a good idea. I always told them that I had Crohn’s and also the medication I was taking. My logic was in case anything happens to me then they can have a basic understanding of my condition/meds. Given my experience with a perforated bowel and peritonitis where I could barely talk to the EMTs due to pain I am super thankful that my roommates knew my diagnosis and the medication that I took. I know that it’s personal information but the benefits FAR OUTWEIGH THE RISKS of keeping that information private, trust me this just happened to me.
Others may disagree but I think that managing and being disciplined with your diet is instrumental to keeping you feeling good and symptom free. Even times when I considered myself in remission I could still have a lot of GI discomfort and this was largely related to diet for me. From what I can tell, everyone with IBD has a different diet that works for them so I’m not going to be able to effectively tell you what to eat.
I identified my problem foods over a long period of time (mostly highschool/middle school) using an elimination with subsequent challenge of a particular food. I would recommend getting a meal plan and to consistently eat in the dining hall rather than constantly eating at restaurants/eating junk food. I know I’ve heard all about dining halls how they’re more expensive, they taste like crap etc etc. To me it is simple, if what you eat correlates to how you feel then spend some extra money to have some consistency in what you eat. Don’t lament over foods you can no longer eat it’ll just make you upset or you’ll go out and eat the food like I did. If you have a really tricky case of IBD or feel like you’re being suffocated by the limited options, consider working with a nutritionist. I have recently begun seeing an amazing nutritionist who has helped me so much I wish I had worked with one in college.
Be smart with your scheduling. Are you a morning person? Do you want class on Friday etc? Don’t stretch yourself too thin here, college is demanding so go to your academic adviser and talk with them about how much you think you can handle. Find your adviser, make an appointment and tell them you have low energy due to IBD. Make a schedule that will work for you! You’re dealing with a disease that saps your energy, make sure you convey this to the counselor so that you get a solid schedule you both are happy with. Also you need to figure out if attendance is required to lectures because you may miss more lecture than other students. Usually this will be on the syllabus that is given on the first day of class and if it isn’t go talk with your professor about what you have going on. I always scheduled my classes for mornings as early as possible so that I could continue my sleeping and could be awake in the afternoon/night to study up. Mandatory attendance to class for me was the bane of my existence.
Legal protections: American’s with Disabilities Act (ADA)
The ADA is a broad civil rights law that prevents discrimination based on disability (physical and/or mental). The important principle here is that public, government funded schools must provide reasonable accommodations to people with disability. What does this mean you’re thinking? Well it’s vague but it can include dorms with close bathroom access or private bathroom, test accommodations, later classes etc. It’s up to you whether you want to go ahead and use these services, I’ve never used them so I don’t know too much about this. Talk about this with your doctor.
If you are living away from college you need to start carrying your insurance card in your wallet. Something may come up and not having it is a huge hassle. Talk with your parents about getting a copy of this very important card that you will need to have with you.
Staying hydrated if you have IBD is important. Make sure you keep some sort of electrolyte replenishing drink in your dorm room in case you need it. This should not replace drinking water but after a tough day of symptoms you may find that you need more then water. Also, being dehydrated can make you feel quite tired so make sure you avoid this by staying on top of your hydration.
I hope I didn’t make college sound too daunting because it’s not. If you take it day by day and manage your stress levels, diet, and overall health you can do it. I just tried to think about things I wish someone would have told me back in the day. Have fun in college but work hard on your studies, that’s why you’re there. And hey, you can do it, I graduated and know 2 people with Crohn’s in college now who are doing fantastically.