Never Say Never (separate from #NHBPM)

When I shared “my story” (, I talked about how I had an ileostomy for three years from 16-19. I also mentioned a great dealabout how there was no way I could ever accept it at that point in my life. Thus, the reason for me having so many kock pouch surgeries. I was fighting it constantly. It was as if every fiber of my being was so angry and screaming at me to do everything humanly possible to get this wretched thing off of my stomach. I was a teenage girl who had different priorities than I do now. I have also experienced so much more since that time which is why I am now on the road to actual acceptance.

Now that I have accepted the bag more, I find myself thinking about ways to make living with this a little easier for me. I came across something online that had the top IBD/ostomy videos and I was finally able to watch something this girl, Charis, posted. I always avoided her facebook page and any response she would give on other support sites because I refused to believe that I belonged in that community of ostomates. However, now that I have come to more of an acceptance of the bag, I am ready to start to learn how to work with it to make my life easier. I think beginning to exercise again would be great for me in a lot of ways. I have worked out with an ileostomy but never with the mentality that this would be forever so I didn’t take the precautions I needed to with my skin. I never really took care of it because I looked at it as something that couldn’t possibly be permanent. I also had zero interest in dealing with it. I wanted to essentially forget that it was there which was what caused me to get in a routine that only consisted of me eating at night.

I vividly remember my dad asking me what would happen if the kock pouch failed and I ended up right back where I was. He asked very seriously and semi sternly “then what?” I remember sitting in my living room with my parents in chairs and me on the floor looking up at them and responding with “and then I will know I did everything possible.” And honestly, I was right. I keep thinking that it has taken me so long to accept it this time around but when I really think about it in detail, it actually hasn’t. I had the surgery at the very end of July 2011 and was diagnosed with pyoderma gangrenosum last November and had to undergo months of steroid injection treatments. The PG made it so the appliance wouldn’t stick on so I couldn’t even leave the house. So, it has really only been a few months where the ileostomy has been functioning properly.

I have realized how much better off I am not fighting it as much in my mind. I am really happy that I have come to this point. I know my parents will attest to the fact that I must have said something along the lines of aliens taking over the planet is more likely than me ever accepting an ileostomy more times than a person could possibly count. I really thought I never would be able to bring myself to search online and do research about ways to improve my life with a bag. The research I did years ago was about potential alternative surgery options. These life altering, complicated medical decisions that many of us are forced to make are tough. They are really, really hard to deal with and often need to be analyzed from a million different angles. Once you make a decision and are in a better place physically and emotionally, the more you can learn how to live with whatever situation you have to endure instead of wasting energy fighting it.