I Just Want to Feel...Free
As someone who suffers from a form of inflammatory bowel disease (IBD), do you ever feel like you are tied to either your home or familiar/comfortable places? Given how unpredictable Crohn’s Disease and ulcerative colitis are, it is only normal to want to make sure you are near a medical facility who can care for you if, God forbid, you need medical attention. I wrote something a few months ago about how you can never truly vacate your body when you have a chronic illness like Crohn’s Disease or ulcerative colitis.
I really wish I could, and envy those people who can, just live...freely.
It gets exhausting having to think about and remember:
- Any type of medical supplies you may need while away (ex, extra ostomy supplies)
- Any medications you have that are needed
- Any necessary vitamins and/or supplements if those are part of your regimen
- Special clothes to ensure it can still be comfortable over a scar or distended stomach
- Extra clothes and underwear just in case
- Special wipes and/or towels for either an ostomy leak or if your behind becomes sore due to frequent bowel movements
- Needing to try on all clothes before packing because of such frequent size fluctuations
- Packing any food related items that you need to stay hydrated and as nutritionally “okay” as possible
- Making sure there is at least one person who you can turn to if something goes awry with your health and you cannot manage on your own
- Weighing the pros and cons of going on the trip given it is impossible to tell how you might feel once it begins (and during)
I haven’t been on a vacation in so long. Seriously. Since I was 11 years old and I am 30 now! I have been to other places but none of them were for “fun.” Given I was diagnosed with ulcerative colitis when I was 13, I missed out on a lot of family vacations with my parents and brother. I am very lucky in that my family wanted to be together and even scheduled multiple family vacations that had to be cancelled because of my IBD.
If I could choose anything in the world right now it would probably be to spend an entire week just living that way I wanted to
without having to take my health into consideration. As the summer weather is definitely upon is, it makes me miss the days when the humidity didn’t make me feel so, so bad.
As with anything, I do know things will change. It is what gives me hope and keeps me going. Our disease does evolve and change in unexpected ways - sometimes it even gives us a break! If you are struggling now with the summer weather now, I want you to know you are not alone. Do whatever feels right for you, your body and your mind. And don’t feel badly about it! ; )
Will you help us understand the impact of Crohn's & colitis by taking the IBD In America Survey (US only)?