Managing Inflammatory Bowel Disease in College
Lori Parker-Hartigan, ND, RN
The transition from high school to college presents challenges for all adolescents. For those teens with inflammatory bowel disease (IBD), this transition is more complex. As our teenaged patients at Children's Hospital Boston approach college age, we spend considerable time providing patient education related to knowledge of the disease and its management, and giving anticipatory guidance in relation to independence, health, and lifestyle issues. It is our goal for all of our patients to make a smooth transition to college life and know how to manage their IBD while away from home and parental input. As clinicians, we remain available to our patients for guidance and support. Given their hectic college schedules and irregular hours, we find that e-mail communication often is the most effective and efficient means of communicating concerns and questions related to the college student's IBD. We are always very clear with our patients that e-mail communication never replaces using the telephone to get in touch with us in case of emergencies or need for urgent care.
The following patient e-mails help highlight the concerns and challenges college students face while managing their IBD.
Symbol 1I have been doing really well this past week, having about two small BMs a day formed with only some blood and mucus[horizontal ellipsis]but nothing like it was before[horizontal ellipsis]. I know you wanted to check my blood levels at some point this week[horizontal ellipsis]here is the fax number for health services at my school[horizontal ellipsis]
I wanted to let you know that for the past few days I have been having loose stools that are very dark in color and I am not feeling well. Is this normal?
One important decision to be made is: How will your patient receive primary care and specialty healthcare while away at college?
I want to let you know that I have a very bad cold. What should I do?
Another thing I wanted to let you know was that mono seems to be going around[horizontal ellipsis]what should I look out for?
For those who attend college near their original gastroenterologist's practice, care is relatively easy to coordinate. These students can continue to have regular follow-up with their existing gastroenterology clinician and can often obtain primary care and needed laboratory work at student healthcare services at their college.
Things have been going very well, but in the beginning of the year I didn't always remember to take my medsSymbol 2. I've remedied that, but I think I am starting a flare and will need to see the doctor you referred me to in Cleveland.
For those who travel farther away for college, more planning is needed. For these students, we refer them to a local gastroenterologist and encourage them to schedule an introductory appointment so they are known to that physician should their disease flare and they need to be seen. Sending them with copies of all pertinent medical records is important and an introductory phone call from clinician to clinician can often ease the transition to the new clinician. Students often need support and guidance from us as to when to seek out care from their college healthcare services or local gastroenterologist.
Another consideration for the college student is how to obtain their medications.
I've moved in at school[horizontal ellipsis]I need to get another refill for my thalidomide, but I am running into trouble finding a pharmacy here to fill it.
Some will continue to have their prescriptions filled near their home, whereas others will need to work with a local pharmacy. Other considerations include storage of medication, what to do if they run out of medication, and whether or not they will tell their roommate about their medication.
I am still experiencing loose stools 3-4 times per day, stomach cramping and lack of energySymbol 2[horizontal ellipsis]I am beginning to think that it would be a good idea to put in an application for a single room with a private bathroom. Will you help me fill out the application?
Living away from home for the first time is challenging for all college freshmen. Couple this with a chronic disease and a number of lifestyle issues must be considered. Housing is often a primary concern. Students must consider what sort of living environment they would feel most comfortable in. Will they live in a single room or have one or more roommates? What bathroom facilities are available and will it make sense to seek out a room with a private or semiprivate bathroom? Will they share information with their roommate about their chronic disease?
I'm still having diarrhea 4 times a day and having pain[horizontal ellipsis]when will the steroids work? I want to party!!
Other issues also must be considered. We spend time helping our patients understand the effect of smoking, alcohol, and other drugs on their disease and any possible interactions of these substances with their medications. Because many of our patients are younger than 21, we discourage them from drinking on the basis of the legal issues alone; however, in those with a history of liver disease (primary sclerosing cholangitis, for example) or elevated liver function tests, we explain that alcohol is contraindicated. For others with no risk factors, we suggest moderation in drinking, and explain that binge drinking is not recommended.
Many of our students are now planning on studying abroad at some point during their college career. We encourage them to do so, but again they must carefully plan.
I am thinking of going to Berlin, Germany, to study this fall and I do not think having ulcerative colitis should prevent my going to Europe to study. Would you be able to help me fill out the medical forms?
I have a semester abroad in the Costa Rican rain forest, how to get all my vaccines?
Where will they get care should their disease flare? How will they get their medications? What are the health risks associated with the region of the world in which they will study? Does it make sense for them to meet with a clinician from a travel medicine clinic to evaluate what vaccinations are needed and whether these vaccinations can be given to a student on immune suppressive drugs? For some patients heading to exotic locales such as Central America or Africa, many of the vaccinations are contraindicated for patients on 6-mercaptopurine (6-MP), infliximab (Remicade), or other potent immunosuppressive agents.
As they approach graduation, most of our patients have become active participants in their own healthcare. They have learned to independently manage their disease and advocate for their own care. Encouraging communication is far better than the more common alternative of ignoring their disease and nonadherence to the treatment plan. This communication allows for a smooth transition from pediatric to adult care.
I feel better than I have in a long time and I have good news-I am going to be moving after graduation and getting my first job in Chicago!!
I recently was offered a job in Washington, DC and I will most likely accept it, so now it looks like a need an adult GI in Washington-do you have any references there?
As they graduate from college, they also graduate from pediatric care. We hope they do both successfully.