The Things I would Have Said
Reflecting back on tough decisions, that if only I had know the outcome
It’s hard to believe it was only a year ago that I was facing having to get my second ileostomy. I look back at that girl who was living in so much pain daily, longing for relief and there are so many things I wish I could have told her. For months I put off seeing a colorectal surgeon and lived in denial because I could not face the fact that I needed a permanent ileostomy.
My day-to-day life was pure agony. I cried every day and was living in the hospital. The local doctors didn’t know what to do for me. Palliative care was trying to manage my symptoms, but nothing was stopping the constant pain. For the life of me, I could not go to the bathroom. As a result, I was having pain, ileuses, and blockages.
If only I could have comforted that girl and let her know that choosing to get an ileostomy would change her life for the better. I would lay there at night crying, in pain, and also knowing that the only option on the table for potential relief was an ileostomy. I wish I could tell myself a year ago that it would all be ok. That she was stronger than she realized.
Both my local surgeon and the local colorectal surgeon refused to give me an ileostomy, saying it would only make my malnutrition worse. I knew that was not the case. They both recommended pelvic floor physical therapy which I had already tried. Back then that girl felt lost, with no help from anyone locally. I had no words to comfort her. My PCP had been in touch with my motility specialist and was pushing for me to go back to the Cleveland Clinic to see someone from their colorectal team.
This time last year I couldn’t do it. I was scared. Although scared isn’t even a strong enough word, I was petrified. I knew if I got another ileostomy it would be permanent. My motility specialist already told me there was nothing left he could do for me. We didn’t even schedule a follow-up after we talked about the ileostomy because until I went through with the procedure he had nothing to offer me to improve my situation.
I wish I could have told myself a year ago that by getting an ileostomy I would be giving myself a chance to live again. That I would physically start to feel better. I would tell her that she was strong and resilient. That she had a ton of support and this time with the ileostomy it would be different. I would prepare her better.
Many nights as I lay in bed crying, continuously getting up and down to go to the bathroom because my rectum was constantly spasming I would think maybe an ileostomy would be better. At that point, I was 100 percent TPN dependent. I was having to vent my tube anywhere from 10-20 times per day. If I did eat, it would make the pain and the spasming worse.
Back then there was nothing I could do to comfort myself. There was also nothing anyone around me could do to help me. I was afraid to leave the house because the stool was trapped in my rectum and sometimes would leak out. I was losing control of my bodily functions. I hated even urinating because it would increase my rectal pain. Back then I needed someone to tell me it would all work out. My husband and parents tried to tell me that, but I couldn’t hear it mainly because I didn’t believe it.
I wish I could hug that girl now, and promise her that in the end, she would fight like hell to make it work. She would find gratitude for her ileostomy. Life would be better with it. She would wake up from surgery with immediate relief. Eventually, she would get off of TPN. The journey would be difficult, filled with challenges but she would find the strength to overcome them to start living again. I think if I had known all of this a year ago, my life would have been filled with a lot less pain.
Sometimes we need to make hard choices. Choices that no one should have to face. However, we need to trust that we are strong and brave. We have the strength and resiliency to overcome the obstacles that come with hard decisions.