...doesn’t mean it’s not heavy.”
This quote from a fellow stomate who frequently posts on Instagram, got right to me. For 3 years now I have had this remnant that constantly reminds me of my struggle with cancer and radical cystectomy (removal of the bladder and all parts south). I think that since my retirement, I’ve had time to process my feelings regarding this constant companion. I don’t regret my decision to opt for a stoma but I regret having to make that decision at all, for sure.
My friend goes on to say “One thing I have to keep reminding people (including myself) is that I have had life changing surgery and the demands on my body from everyday life will effect (sic) me in different ways now. This bag brings unique challenges, with highs and lows.”
Check out IBDLIFE on Instagram as Ant reveals his story. He suffers from Chrons and now has an ostomy and is an advocate for ostomy support and fashion.
My journey is a bit different but no less life changing. I had cancer. I did not have to have chemo because we caught my cancer in it’s early stages but the cancer was a very aggressive type so a radical procedure had to be performed. The recovery and relapse was brutal but the more subtle weight is constantly with me, hourly, daily, weekly.
I generally wear my bag outside my pants, covered and I only wear my bag inside my waistband for special occasions like the wedding last August. I am forever cognizant in those situations as the waistband’s pressure on me that can cause a devastating leak. It’s happened before, I’m sure it will happen again but I’ve become confident enough to no longer keep a change of clothes in the car. I tend to stand a lot, sitting makes me uncomfortable as it increases pressure on the system.
Traveling is a bit much. I had forgotten my connector to my night bag on a trip to Brenda’s folks and had to sleep in a chair all night and set my alarm to wake me every 2 hours to empty. Lesson learned the hard way. On long flights I will bag up so I don’t have to get out of my seat. I’m surprised how much the cabin pressure affects my output. I may have to get up twice on even short flights.
We talk of international travel again but it brings trepidation of TSA check points, where very unusual and very public encounters happen and the thought of another ignorant TSA agent calling me out or literally pulling open my waistband to peer inside, gives me pause. I have had to lift my shirt up, at the check in so they can actually see my bag because they cannot fathom what fluid I might be carrying with me. Of course you have to be good natured (not my forte) and take the opportunity to educate, constantly pushing down your embarrassment, frustration and anger.
Life goes on.
