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Leaving Home

I left home recently because I can. I’ll be in Michigan for 6 months catching up on life. During my time with Crohn’s disease, leaving home has either been risky or downright impossible. So many of us with chronic illnesses experience the frustration of being stuck at home just surviving, instead of thriving and moving forward with our lives.

Back in 2007 when my family dropped me off at Hope College and began their extended gamble that my health would turn around. That first drop-off is a tough day for parents of a sick kid!

Some people thought my parents were crazy to let me go away to school, and some think they are crazy now for supporting me in my new adventure. It’s understandable; these friends know my general health history and worry about me. Through my conversations with fellow IBD sufferers, I have learned that this sort of situation is not uncommon, which is why I would like to share a few thoughts with you today.

Considerations for everyone:

  • Availability of good medical care:
    • Research ahead of time, and visit the specialists you intend to see if possible. Especially if you have complicated health issues, you may run into trouble in less urban areas. The doctors at smaller hospitals may have limited expertise with, shall we say, “special” patients. They may be hesitant to work with you, so you should interview them while you are still home before you have committed to leaving. Everything might be just fine, but the sooner you start asking questions, the better.
    • Close proximity to a hospital is ideal, especially if your health is even remotely unstable. Whether you have ongoing health issues or an ostomy, I can guarantee that you will want a fairly short trip to get help when you’re physically malfunctioning.
  • Food: 
    • Farmer’s markets are a fantastic source of nutritious food, but they can be daunting if you’re not feeling well. If your guts are the problem, scouting for bathrooms at nearby businesses is best done when you’re not desperate. For those of you dealing with musculoskeletal pain or fatigue, you might want to invest in a wheeled cart or backpack. I felt oddly self-conscious as I wheeled my purchases around, but the errand is much more pleasant when you’re not getting progressively weighed down by your goodies.
    • Nutritional deficiencies are common for people with abnormal guts, and cooking decent quality food is difficult for those of us with joint pain. Ostomates and IBD folks may find that eating smaller meals throughout the day is the best nourishment plan, but whatever the case, living at home with family helping out is less challenging than fending for yourself. When I’m on my own, I am a big fan of cooking large batches of something and freezing single serving sizes. On bad days, it is so wonderful to grab some soup or pre-cooked meat out of the freezer and just heat it up.
    • If you are a college student who will be living on campus, talk to housing coordinators to find out if you can have a freezer in your room if you think you might have trouble with the cafeteria food. If you’re very ill, you might find that sometimes you do not feel like going out to eat, so plan for having healthy options available in your dorm room. Some schools have more possibilities than others for people with special nutritional needs.

Ostomy

  • From what I can tell, your ostomy should not interfere with any travel or relocation plans. The only issue you might have is access to Wound, Ostomy, and Continence Nurses (WOCNs). They are less common in some areas, so make sure you have someone to contact if you have any ostomy-related questions or skin problems.
  • Climate: If you’re moving to a significantly warmer climate, just plan on keeping your supplies relatively cool. Adhesives behave differently in high temperatures. I once left a box of ostomy gear out in a toasty hot car for a few hours, and the resulting melty mess didn’t work very well. Insulated shopping bags, coolers, and lunch bags are your friend.

Chronic Illness

  • Travel
    • If you’re going to be making trips between school and home, for example, travelling by train or bus is ideal. Whether you’re dealing with pain, angry guts, or dismally low energy, you don’t want to rely on road trips to get around. I am not saying that you can never drive anywhere, but it’s really nice to have bathroom access and the ability to nap when you’re not feeling well. I could not have gone away to college if I had to drive myself everywhere, and I am sure some of you have trouble with transportation too.
    • If you’re relocating for a while, be careful moving. That might sound obvious, but I would be willing to bet that some of you are like me: stubborn and tenaciously willing to work until you’re just about ready to fall over. Family and friends don’t want you to break yourself, so don’t be afraid to ask for help.

I don’t want you to feel like your illness will keep you from venturing out forever. You will be surprised at what you can accomplish with some creative planning, patience, and for my IBD readers, the mental and emotional security that comes with proximity to a toilet.

  • Refrigerated medication: Delivery requires a signature, which can be tricky if you’re a college student living in a dormitory. If you talk to your campus health staff ahead of time, you can probably have your medication delivered to the health center, and they will be able to keep it cool for you. If you’re really sick, the extra bonus to this delivery plan is the regular interaction with healthcare professionals who can tell when you should quit being stubborn and get to a hospital for some fluids. You might end up with a bunch of extra moms. I sincerely hope you do.

When I went away to school, I was hiding this infected mess. Getting this sexy little festering wound treated was surprisingly difficult until I found a doctor whose diagnostic methods involved more than sniffing it. Yuck.

Acute Illness

  • If you’re ridiculously sick, consider everything above, but also ask yourself if leaving home will definitely threaten your physical well-being.
  • If you faint on a regular basis and you’re planning on living alone, your family might feel better if you have a plan to check in with them, a friend or a residential staff member once a day. They will appreciate the knowledge that someone is making sure you’re not unconscious or alone without help for long periods of time. Sometimes my college buddies would stop by just to make sure I was capable of responding. I couldn’t always answer the door, but I could yell out that I was “fine.” In this case, “fine” meant I didn’t need urgent medical attention. I apologize if this sounds scary or morbid. I was a mess, but I was determined to stay at school and make the most of my time there. Sometimes we just had to get a little creative.


Personally, my acceptable threat level is pretty high, but I consult with my doctors and family enough to be comfortable with my decisions. I went off to college with a feeding tube, clear liquid diet, and severe Crohn’s flare. Looking back, even though I had to leave two months into that year and I felt awful, I am still glad my parents supported me as I went away to school. With some help from my dedicated mom, I planned everything with my college staff, but my failure to investigate the local specialists proved to be my downfall.

We all have different fears and challenges, but I encourage you to venture out the best you can, even when you are worried about social situations and health difficulties. I also encourage you to take time to live at home when you know you probably should, and don’t charge into any relocation schemes without prior research.

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One comment on “Leaving Home

  1. Alyssa, your blog is very well written, intelligent, and an excellent source of support. And great username — that’s the catalyst for my visit and Follow. Very happy I stopped by. You wrote: “We shouldn’t all have to reinvent the proverbial wheel.” Exactly. This is the topic of a forthcoming Rollin’ post, discussing the differences between teaching and learning the purely mental vs. physically applied skills.

    Kudos for being so very strong and brave to attend college with such formidable health challenges. I was healthy in college and recall some of my best years there. I became ill 10 years into my career and still mourn the loss, which has lessened over time and as a result of finding support blogs created by people with chronic illness & pain & ostomies.

    I look forward to your insightful posts and gaining a new friend and health activist collaborator.

    Keep up the great work!

    Best,
    Cary

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