Sometimes I feel like such an oddity having an ostomy and other medical equipment on my body. I don’t think my friends, family and others could possible understand how I live each day in a very different way than they do. They are used to using the bodily orifices naturally given them to take in food and nutrients and dispose of waste normally.
However, I eat through an intravenous line going into my heart, defecate into an ostomy bag attached to my abdomen, empty my stomach contents through a bag attached to a tube going into my stomach, and I catheterize in order to urinate. All of this makes me feel very isolated. Though, I have found that attending national and regional ostomy conferences with patients who have similar issues has given me more confidence and lots of happiness. I find it very worthwhile to take trips across the country to meet others who use the same medical equipment as me.
The United Ostomy Associations of America National Conference is particularly special to me.
I met another woman, Sarah Hitchcock, with the same illness as I have, Hirschsprung’s Disease. In addition, there was another young man, Sam from Missouri, who also had Hirschsprung’s. The three of us were able to relate our individual stories and validate everything we had endured which was so empowering and heartwarming. There was an immediate bond between us, almost as if we'd found long-lost relatives. I’m looking forward to seeing Sam and Sarah at the 2019 UOAA conference in Philadelphia. Hopefully, there will be outbreak sessions where we will be able to meet other people with Hirschsprung’s to join our little group.
Ostomy support groups are amazing. If you're reading this, and you've already been to a support group then you know first-hand just how helpful it is to see people face to face who understand what you've been through in your ostomy journey. The United Ostomy Associations of America National Conference is like one humongous support group with even more opportunities to interact with fellow ostomates and folks with continent diversions. I truly believe that attending the national conferences and ostomy support groups is a worthwhile way for an ostomate to spend their time. You can learn a lot from the internet, online support groups, and your local support group, but the conference offers opportunities to attend sessions and speak one-on-one with professionals all in one place. Knowledge is power and the more knowledge we can get about our conditions, the easier it is to face the hardships that come with them. Plus, there's an exhibitor hall full of products that are designed to make your life more comfortable - can't argue that!
On top of all the information that is exchanged, friendships are born.
I believe that's where the magic really happens, at least this was my experience in St. Louis two years ago, and it held true for the Irvine conference as well. In fact, my best friend for the last two years is a woman that I met at the St. Louis conference. Having each other to lean on has been priceless, and while it's nice to have a friend to bounce ostomy related stuff off, our friendship has evolved into so much more.
I also think that our friendship and her experience at the St. Louis conference really helped her become more comfortable with her ostomy. Sometimes we get so stuck in the idea that it's "our problems" or that we should "deal with issues” all alone. We forget that we don't have to!
Not everyone at the conference is 100% okay with their ostomy.
I had the privilege of interacting with two different ladies who were still coming to terms with having an ostomy. They both decided to attend the conference, but it was clear through talking with them that neither was comfortable being there. Maybe I'm assuming their emotions, but I got the impression they were feeling a bit out of place and were uncomfortable saying the word ostomy to themselves let alone out in public to a stranger. Yet, here they were at an ostomy conference talking to this perky 30-year-old who posts pictures on social media of her with her pouch out loud and proud. If I were them, I'm pretty sure I would’ve been thinking to myself, "oh my gosh, what was I thinking coming here?!"
I'd met these ladies separately, so I made it my mission to introduce them to each other. You see, there are people on all different levels of their ostomy journey at the conference and sometimes meeting that person who is in the same emotional space as you is a lot more comforting than meeting someone who has a totally different perspective. I finally got them to meet in the exhibit area, and as they interacted I could see the level of comfort increase and their stresses decrease a little. Just writing about this and thinking about their interaction gives me the happy chills.
They whispered to each other in the middle of the exhibit hall as they traded their brief stories and I couldn't help but point out to them that they were whispering about having an ostomy in the middle of the exhibit hall at an ostomy conference. They traded numbers and I hope they keep in touch. Interactions like this and the friendships that are built really are what make the benefits of the conference so long-lasting.
I hope to see you at the next conference in Philadelphia, PA from August 6-10, 2019!