Jessica Harder writes:
I learned about Patient Coaches through Instagram, and goodness, it truly pulled at my heart strings. I have had IBD/Crohns for 21 years. If only social media existed in the way it does now when I was 12 years old, maybe I would have had more memory of my childhood and college years. My brain has blocked out so much from the pain I was in during my younger years (I am now 33), both emotionally and physically.
In 2014, things became really severe for me. At the time, my diagnosis had changed from Crohn's disease to UC. I had a total colectomy as things were life threatening and I didn't have much time left. I became a candidate for a JPouch, because years of testing proved there was no disease in my small intestine. Years of testing and multiple doctors told me the same thing. So, the 3 step JPouch surgery is what I did at the time. During this process my JPouch became very sick. Nothing made it better besides huge doses of IV steroids and antibiotics. For over 3 years, I suffered with on again, off again, periods of remission where I would yo-yo between flareups. What I didn't know until recently is that I am actually suffering from Crohn's disease of the small intestine. Thank goodness I was quickly admitted into the Cleveland Clinic in mid September of this past year. I had my second loop ileostomy (3rd ostomy) placed and was faced with the brutal decision to try and save my JPouch and trust it again, or have an end ileostomy placed with a more likely shot at a better quality of life. Well, I tried everything to save my JPouch. Even Hyperbaric Oxygen treatments. It was not meant to be. So, on December 5th, I had my permanent ileostomy placed. My permanent ostomy has been my best functioning ostomy. 4th time is the charm and thank goodness because it is permanent now :-) Of course, as we know, no decision leaves me with a guarantee of achieving pain free days or a certain quality of life.
That is why Patient Coaches really spoke to me. What I have learned since my first scare that dieing from complications of this disease was a real option, is that when you take the leap to share your story, gosh you become so much stronger because of who your story reaches and helps. Even those who remain silent while reading my struggles, I know deep down they are the same as the little 12 year old version of myself, getting bullied in school from steroid moon face, no longer the star athlete, with parents who had no idea how badly my mental health was suffering and at the time would endlessly argue with me when I would try to flush my medicine down the toilette. I suffered silently for over 15 years about the pain I was in emotionally. And, what I also have learned is that when you share your story, not only can you help others, but in return you gain acceptance of the disease that has caused you to go through all the stages of grief over and over with every new battle that it forces you to face. So, in summary, I would love to be a Patient Coach.
I'm working out again so I would love to help others with fitness related questions and taking things slow. I work as an engineer and have an active job, so I would love to answer questions about nontraditional work attire and working in manufacturing environments/non office environments. I would love to help answer appliance questions and all the difficult questions a lot of people don't feel comfortable asking their doctor (intimacy, social life, etc.). Most importantly, I would love to help support anyone who is struggling with their mental health and acceptance of their ostomy. My coach Cody has been such an inspiration and has helped me so much with this. 11/Health is amazing and even if there isn't a spot for me as a coach, I am so so happy to be part of the family :-) Goodness, it would be a dream though to become a coach and offer support to anyone who needs it. So, I'm keeping my fingers crossed. Thank you!