I wanted to break up my experiences in Philadelphia into a few posts so it didn’t get too overwhelming for me, or you. I spoke about the events of the conference as well as how I felt exploring a place I had never been to.
Now, I want to talk about how my inflammatory bowel disease and ostomy came into play.
First, I want to say that it is because you would never know I was going through a lot by looking at photos or even speaking with me at the conference that I am sharing this. I never want people to look at pictures or things I say on social media and get the wrong impression.
I do not like to air my dirty laundry (so to speak) constantly but I also do not want anyone to come across my blog or any of the advocacy work I do and think everything is great with me, so there must be something wrong with YOU. I have come across too many things like that online when I was searching for support and it made me feel more isolated than ever; that is why I try to share ALL that I go through with my disease.
Chronic illness patients have a phony “I am fine” mentality that they have perfected to the outside world in order to feel “normal” in the presence of others who do not have limitations. It unfortunately becomes second nature to a lot of us because if we shared everything we were dealing with with others, who would want to be around us?
Anyway, my ostomy leaked a few days in a row. One of which was in the hotel room Tuesday morning before the conference. I had just changed it after another leak the previous day so it honestly pissed me off.
It took us seven different restaurants/menus until I could find something that I could eat. It was outrageous. It was like I had been living in this eating bubble so hearing about all of these detailed foods that sounded so good was foreign to me in a way. I rarely go out to eat for reasons you can imagine but this was just…. WOW.
Anyway, we finally found a place and I got a veggie burger (no veggies in the burger) and had some of the french fries that came with it. I then got chocolate milk to try and flush things out.. just in case.
When I say I felt physically bad Tuesday morning when the bag leaked, that was a huge understatement. For about twenty minutes, I had no idea how I was going to get out of bed. All of a sudden I felt a ton of *you know what* come rushing out of my stoma and then I started feeling better.
It was like a minor partial blockage.
Knowing my body the way I do, I would venture to say that the combination of my inability to digest the french fries (the skin) coupled with the fact that I was eating something heavier (and thicker) than usual caused the bag to leak.
Going to be blunt here… this whole situation disgusted me. The fact that I cannot eat about 98 percent of things offered in restaurants and just in life, is not okay. I see pictures of fellow ostomates eating these great dinners with veggies and things that I wouldn’t touch with a ten foot pole. I know everyone is different but it made me realize that maybe I am missing something. Maybe it does not HAVE to be like this for me. I just feel like I have so many more limitations with eating than other ostomates. I do not like to compare but what happened Monday night/Tuesday morning really made me feel like I should make an appointment with a great gastrointerologist and discuss all of these things with him/her.
And that is what I am going to do. If I can bring myself to make the call ; )