Updated “Ripley’s Day” blog post
Today, the UOAA, United Ostomy Association of America, and anyone who can identify, celebrates the miracle that an incredible amount of us live with, called “ostomy”.
Many ostomates and advocates for them, as well as for the multiple conditions and diseases that can cause the need for an ostomy, will descend upon social media to declare the surgical procedure that changed our lives; that saved our lives. Hashtags #ostomyawareness #ostoME #TheRightToBeME will flood the cyberways!
We will walk with our local UOAA groups, maybe with our support systems or even alone, but proudly wearing our tee shirts declaring our gratitude for a second chance, promoting this miracle of medical progress:
Ostomy surgery saves lives.
Some proudly display – others not so much. And its OK however we take on this day – silent or bold – or somewhere in the middle! But sadly, there is a stigma that surrounds and often erroneously defines who and what we are, so days like today are vital to spreading awareness and education.
Speaking of education:
Some types of ostomies are ileostomy, colostomy (G.I.) and urostomy (urinary). Placement and reasons vary from individual to individual (see infographic below).
Some ostomies are “loop” or “end”. They can also be temporary; others permanent.
I am an “end ileostomy” recipient, likely to be permanent & due to the effects of Inflammatory Bowel Disease (IBD is mainly, Crohn’s and/or ulcerative colitis), multiple prescription failures, and one too many times with c.diff – a nasty overgrown “bad” gut bacteria that together, took out (literally) my colon almost four years ago.
For me, that means I now have two ways to “go to the bathroom” (“#2”)💩 (three if you count going “#1”) 🙂
Many of us also name our “stoma” (the part of the sort-of rose-shaped small bowel extension that exists outside the body) because it helps us accept mentally that they are an integral part of our existence now. I named mine “Ripley”. How familiar are you with the Alien series? 👽😎 More later…
It also means that because I am not completely “closed up”, I have bleeding still happening in the section below where my colon was (called the rectum). This is because I (or my IBD) was not “cured” simply because my large intestine organ was removed. That remaining part of my lower GI still produces fluids to process substance it’s not receiving since the colon is gone but it still keeps trying. In fact, Inflammatory Bowel Disease does not yet have a cure. It is an autoimmune disease with extra-intestinal manifestations (meaning I get symptoms even outside of my G.I. tract). Also, because I still have upper GI issues that require daily medication to combat inflammation and irritation, yearly scopes for my esophagus & stomach (and small intestines via the opening/stoma) are required as well.
Though offered, I have not yet decided to have the surgery (proctectomy) that would likely stop the issues in my lower GI because since 2015, I have spent a lot of time in and out of the hospital and I’m not quite ready to go back; not to mention with the last surgery, I woke up and was unable to walk (see my thigh high plaster “boot” below). I guess you could say I’m still healing from that In many ways. Can you relate to having PTSD? That’s the only way I can explain it.
Unfortunately, I can’t wait too long. I’m at a higher risk for cancer in that part of my body due to the ongoing issues and family history of lower GI cancers. Therefore, I am currently consulting with a colorectal surgeon.
But today is about celebrating this surgical miracle that gives us ostomates a second chance at life. Yes, our lives are completely changed and we have to find new ways of doing what people without ostomies do – or maybe what we once did “naturally” but I for one am thankful for the medical advances that make life possible for me today. I may need to monitor my appliance (the pouch and what keeps it attached to my body) and make sure that my skin is protected and doing well, my seal is as secure as it can be and spend time each day & week with a new routine, but at least I am alive – and I am blessed to NOT be attached to an IV bag 24/7 or a hospital bed (even though I have needed to hit the emergency room several times because without having a colon, I dehydrate often). I also still tire easily but I make adjustments for that as well (#naps) 😴.
I also need to mention that I have been incredibly blessed to live just about an hour or so away from the hospital my surgery took place at that has one incredible ostomy support group. The group’s leader was actually my WOC (wound / ostomy care) nurse. I had great pre and post surgery education!
So here’s a little info graphic and just a peek at Ripley’s attire. Of course there is an entire accessory market for ostomates – everything from belts to protective coverings for athletic activities as well as swimwear and pouch covers. Just type what you need in a search engine 🙂.
Got questions? Holler at me 💜.