Friday, March 3, 2017

Having an ostomy and ALS - it is getting complicated

Before you continue reading this blog post, you should know that I am going to be talking about poop. And other sensitive material. So if you don't want to read about poop, you might want to skip this one. Its okay. I won't be offended.

Wednesday night my dear friend Laura brought us dinner. Oh my goodness, it was delicious! She made buffalo chicken pasta (for Adam and Ean) and spanikopita pasta (for me and Gillian). The spanikopita pasta was filled with spinach and feta and of course, pasta, three of my favorite things. I ate a lot of it. It was so good!

Well, apparently I can not eat spinach in excess anymore. Who knew? Not me.

The next day I changed my ostomy apparatus as I typically do on Thursday mornings, ate breakfast, and then since I had been up pretty early that morning I lay back in my power wheelchair (pwc), and took a short nap before my Dad picked me up at 11:00 to go food shopping. When my Dad got here I headed to the bathroom one more time before our outing only to find that my bag had leaked. Oh crap! Literally. It appeared that I was no longer able to digest spinach anymore. I informed my Dad of the situation and he helped me to get upstairs to the bathroom with everything I needed to change my ostomy apparatus AGAIN as well as get redressed. I knew this was going to be tricky. Tricky for someone who was able bodied but doubly tricky for someone who doesn't have full strength in their arms, hands, and legs. But I was determined to do this without panicking or getting hysterical. What good would that serve?

I got my pants and underwear off, but when I went to lean over to get a washcloth, my bag exploded. Yup exploded. And the poop went all over the floor, directly into the space that I would need to put my feet in order to get myself pulled together. I uttered a few expletives, covered myself up with a big towel, took a big breath, and called my Dad into help me. And without blinking an eye, he did. He cleaned up the mess, and waited for me outside my bedroom door when I needed him again to help me finish getting dressed. I apologized a few times for putting him in this position, recognizing that this situation was awkward to say the least. I even hesitated to write about this because I didn't want my Dad to feel uncomfortable. But my Dad told me to stop apologizing, that he loves me, and went on his way helping me like this is part of the process. And it is. And although I fretted over the "incident" a bit yesterday, I am now over it. When texting my cousins/sisters this afternoon I said "I've resolved that this is all part of my life now. I've got to find a way every day to let these uncomfortable things go and focus on the positive. Like today I made myself a delicious lunch [no spinach] and got my pants up and down in the bathroom without incident. I know these things seem trivial but to me they are positive accomplishments."  I believe that!

My Dad and I did eventually get to the supermarket yesterday. I wasn't going to let a little poop, an embarrassing situation, and exhaustion get in the way of strolling through the aisles of Wegmans! One positive I discovered during this trip is pre-cut cheddar cheese. I love extra sharp cheddar almost as much as I love drinking through a straw. Cutting chunks of cheese - not on my ability list these days. So I spent the extra dollar and bought pre-cut extra sharp cheddar. Today I was able to open the packaging, take out the cheese, and close the packaging. Oh my! Cheddar cheese never tasted so good! It is the little things that give me pleasure and a strong sense of accomplishment. Like pre-cut cheese.

So living with an ostomy AND living with ALS is getting more and more complicated every day. It takes more adjustments and "tricks" to change my ostomy apparatus on Thursday mornings, but I am still doing it. And every Thursday morning, as I finish up, and I get my tired ass back into my wheelchair, I give myself a little pat on the back (not literally because I can't reach my back anymore). For I have gotten through one more week of doing this task by myself. And I know that I have people beside me when I need a little help.

                                                                      Some of my ostomy supplies


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