It’s been almost 6 months since my surgery at Boston Medical Center for an ileostomy. This surgery (1 of 3) leaves me with a piece of my small intestine sticking out of my (stomach) abdominal surface. The stoma is an active raw intestine shaped like a large red button protruding out of my stomach. It releases sometimes thick yet sometimes liquid like body waste (feces) all throughout the day depending on how much and what you eat and drink.
I have been ordering products (all us crohnies call these required products appliances) from Hollister Incorporated. Well, in the mail this week I received a notice and a sticker from them. They are asking me to participate in Ostomy Awareness Day this Saturday, October 7th, 2017. I am being asked to place the sticker (picture of a stoma) over my clothes, on the right side of my abdomen where my true stoma is located. Then I need to take a photo of myself and share it on social media with a hashtag to help raise awareness and show support!
I’m so sorry ostomates I just cant do it!
Don’t get me wrong I love to get involved helping others but this… this would revile my own insecurity. This hits home for me big time! The stoma (I feel like I will never name it) is the most body altering change I have even had to encounter. This change has affected me in so many different ways. Not only did I have to change my lifestyle my point of view has also changed in the way I look at myself. Changing my lifestyle for the better is not an easy task. At age forty, once again I have insecurities about my body mostly only because of the stoma. I have never been a ten but this… “the stoma” has me feeling very uncomfortable with my body. Just wear the sticker…
The first few months after surgery and sometimes still today my stoma seems to be out of control. It has a mind of its own as some say. I am still learning how to have a successful “appliance” change each time. The “timing means everything”, retold to me by my kind home health nurse (she comes to my house weekly). Some people say “the shit hits the fan” but working with my stoma, I say “it shits uncontrollably”. I know bad joke. Between the everyday complex problems that come along the roller-coaster ride of Crohn’s Disease the stoma toxins cause the skin to breakdown. I once had skin breakdown 3 cm deep. It gets chaffed, I have a rash all around the stoma currently, its an open wound with cuts and it bleeds. I keep thinking about not helping to rise awareness on Ostomy day (tomorrow). It sucks feeling alone and I know the more people wearing a sticker the better! I need to do this. As if the stinging, burning, and stabbing abdominal pains are not enough. The stoma’s regular condition continuously has me in extreme discomfort. I want to wear the sticker to help rise awareness but I am too chicken (scared).
All I want to do is keep the stoma clean and working (blockage sucks). I need to try to once again to love my body. I need to truly welcome the stoma and be grateful. I am still waiting for the confidence of an ostomy model. Until than I will continue to work on strengthening my courage. I am lucky to be alive as the ostomy surgery saved my life. For that I am glad to have the stoma. I just worry people will point and be grossed out. I mean take a look at a stoma someday. Its so ugly! I feel weak, I feel as if I should be comfortable with (the stoma) Ostomy Awareness.
First ever blog