Knowing when to keep fighting or let something go has always been a difficult concept for me. This is the case in many areas of my life but especially when I was fighting so hard to have a life without an ileostomy. Whenever I would second guess my decision to try having kock pouch surgery, I would replay the words from the song “Never Surrender” by Corey Hart.
“No one can take away your right to fight and to never surrender.”
That line has been repeated in my head over the last six years probably more than anything. I knew going in that it was something I needed to try if I had any possible chance at accepting the inevitability of living with a bag. After the 3rd kock pouch surgery, I sensed my dad’s despondency over the whole situation. Both of my parents know me better than anyone and I think my dad saw what all of this was doing to me emotionally way before I did, and although I can’t be certain of this next thing…but even more so than my mom. I think my mom identified more with me since she could put herself in my shoes since she was a teenage girl and knew firsthand how difficult that was in and of itself. And then when you layer on all of the body alterations I have had either because of surgery or medications (prednisone), she knew how much it affected me. My mom knew more than my dad (in my opinion) how much I needed to continue fighting. My parents have always been a good balance for me but in this situation in particular, it was really helpful for my psyche.
Throughout everything I have been through, I have always consistently said that nothing would change just because someone told me to do something. It always always always had to come from me. I have been extremely consistent with that statement and it has been true for every single aspect of my life. My dad has a very coach-y personality and has tried to rev me up on many occasions and even though everything he said was true and made complete sense, I was never able to do the things he said until I was ready. For example, since I was diagnosed my dad knew how beneficial it would be to “embrace my community.” He was absolutely right… now…. but at that time, I wasn’t ready. I needed to get off the surgical roller coaster and give in to having an ileostomy. Again, he was absolutely right but it couldn’t and did not happen until I was ready.
Being diagnosed with ulcerative colitis at the age of 13 changed me. It took me out of the safe and comfortable life and world I thought I was living in and turned it upside down. Out of nowhere, everything was just different. I lost control of my body, and after going through so much, I eventually lost control over my emotional state. I have told my parents that I felt like my soul was buried underneath this person that I hated. I felt like my soul was covered by this person I didn’t even recognize anymore. I went from being someone who was confident, in control and focused to being angry at the world and angry at life.
When I was in the hospital after my 5th kock pouch surgery, I met a nurse who was a little bit older than me. I was having an awful night and she stayed with me and we talked for a while in the middle of the night. She told me her boyfriend had an ileostomy, told me some stories about the insecurities he initially was faced with, and actually looked at me and said “what are you doing to yourself?” I was so weak and so underweight but more than that, I was emotionally finished. That night was the only time my dad didn’t stay over with me. After he left, my anxiety was through the roof and my heart rate was over 150. I had been diagnosed with PTSD and that was one of the times that stuck out in my head that I was like a wounded warrior who continued to go back into the battlefield. I was so afraid that night. I am actually starting to cry as I am writing this now but that night and that moment was when I saw how I needed to become strong again. My parents became my security blanket when I was in the hospital so that night when I didn’t have my dad with me, I lost it. I needed my parents so badly. I felt like a prisoner attached to a million tubes, having a central line in my neck since it was too difficult to get an IV in or take blood. All I wanted was to get out of there and to go home where I felt safe and secure.
This was in February of 2011, so fast forward to July when I made the decision to end the fight and do whatever I could to never even come near Mt. Sinai Hospital again. I made the decision to end the fight and give into having a bag. I certainly went back and forth with my parents, emailed an old friend who had an ileostomy, but at the end of it all…I went into my 14th major operation at the end of July 2011, knowing that I was doing the right thing. That, and only that, was the reason that I eventually became to accept the inevitability of living with an ileostomy. My surgeon told me down the road if I ever wanted to try the surgery again, I am a candidate for it. I clung to that for a while but then realized after a lot of soul searching that I needed to get rid of that option in my mind for right now. Maybe in 10 years I will re-think it, but for right now, the very thought of even going into NYC in general makes me want to burst into tears. So, clearly I was very naïve in thinking I could handle another surgery. Once that option was off the table, it was a lot easier to accept what had happened and acknowledge that I did everything I could to rid myself of having an ileostomy.
At the end of the day, I made the decision to end the kock pouch fight. My dad kept telling me that I was fighting a battle I couldn’t win. And unfortunately, he was right. No matter how hard I tried, no matter what I did or didn’t do, I was going to lose this battle. One of my favorite lines from the television show greys anatomy always popped into my head after I made that decision, which was “You were in a lion’s fight. Just because you didn’t win doesn’t mean you don’t know how to roar.” I knew I was one of the strongest, if not the strongest person I knew (hehe) but, I had to accept that this wasn’t meant to be.
“Giving up doesn’t always mean you are weak; sometimes it means that you are strong enough to let go.”- unknown