In June of 2022, I woke up from surgery with five missing organs, a new opening in my abdomen, accessing my coon, and some new medical hardware encasing it.
I had anticipated the abdominal change and hardware, but my excellent surgeon, Dr. Deane Smith, soon informed me that the changes weren’t reversible, as we’d hoped.
I felt a heavy disappointment and sometimes still do. On the bright side, disappointment doesn’t rule. Gratitude does.
I’ve had GID (Gastro-Intestinal Disorder) since birth, which made life challenging for as far back as I remember. Before my own memories, my elders remembered and filled me in when I got older.
Persistent abdominal discomfort, bouts of nausea and an ever-increasing need to know where the bathrooms were located in every building I entered, so I could get to them quickly. The illness made work and social activities difficult and as I grew older, often impossible.
By the time I was 55, my time was often restricted to short trips and staying near home and was on a constant dose of meds to help me tolerate the GID challenges. An additional complication brought on by the illness was consistent bouts of fatigue and mind-fog.
In late autumn of 2021, I ended up needing emergency surgery, which led to the discovery of rectal cancer.
A new normal
I opted to delay the surgery to remove it in order to have a chance of shrinking the tumor, hopefully making it small enough to allow me to have a reversible colostomy.
I had four weeks of chemotherapy, Monday through Friday, and six weeks of radiation, Monday through Friday. The medical protocol did manage to shrink the tumor, but not enough to allow for a reversible colostomy.
Unless I get a miraculous healing, I’ll be wearing a stoma-device (bag) attached to my abdomen for the rest of my life.
I’m not thrilled about it, but again, I’m thankful for it. It’s a small price to pay to be cancer-free and to have at least a good bit more freedom in being active and not as location-restricted.
I had three more months of chemotherapy post-op and didn’t tolerate it well, so most of my days were spent between the hospital (thank you Deaconess Gateway Oncology and Infusion Center and Chemo Buddies!) and home.
I had excellent care, not just technically, but personally and even spiritually. Most of my care team are Christians and more than once joined me in prayer for both myself and others.
During treatment, and after surgery, I became a part of a couple communities new to me. The one I’m featuring in this post is Ostomates, meaning anyone with an ostomy, and even their loved ones. I’d done a fair bit of research on ostomies before surgery, but kept it limited so I’d not be stressing over it.
When I learned mine was permanent, I began engaging in more depthy research, via YouTube, Facebook and Instagram. Once I connected and began interacting with these groups, life got easier.
Before long I was interacting with other ostomates within the social networks. I learned sooooo much from them that I didn’t learn while hospitalized. Every hurdle I’d had to overcome, many ostomates had already surpassed them and shared the information on how they did it to help newbies, like me, be able to overcome them, too.
The groups weren’t comprised of only folks with stomas (ostomies), but also their caregivers, many of which are parents of infants who’d had to undergo ostomy surgery, sometimes in less than 24 hours after their birth. Many others were parents of toddlers, or older children with stomas.
The myriad of complications new ostomates encounter makes up a pretty large list, and it seemed everything on that list was represented in the social network group members. The information isn’t always easy to share with others, and yet thousands have done it anyway, even to sharing images of their stomas and the medical devices they use to accommodate them.
I’ll be sharing some of the businesses, organizations and other types of stoma-support information in upcoming posts. Today, tho, I’d like to introduce a new friend, I made during my quest for knowledge on all things stoma-related.
His name is Jai and I found him via his YouTube channel, Indian Ostomy Boy. Like me, he’s a rectal cancer survivor with a permanent colostomy. Jai is a veteran of stoma-life, having had his diagnosis, treatment and surgery several years ago.
His attitude is consistently positive and I’ve loved getting acquainted with his life as an ostomate in both rural India as well as the city. He’s an accomplished yet humble man who makes himself available to those needing information on what to expect, available options and how to live their best life, even with a stoma.
I hope you’ll please check out his YouTube channel just for the sake of learning, as well as supporting him as an independent business owner, and in addition, in event you know someone who’s part of the ostomate community.
You can find Jai’s content in these locations...
Working together in community support and educating others
The ostomate community is dedicated to not only helping ostomates thrive in stoma-life, but also to raise awareness about stoma-life to everyone, helping folks understand the challenges ostomates live with—especially those that can be especially distressing when they occur in public places.
Examples include stoma-device failures that can make for an embarrassing mess, or (one of which I experienced recently) stoma-produced sound effects that ostomates have no control over.
I’ve read several recent accounts of what I deemed to be social horror stories that ostomates experienced. They were bad enough that I felt great sympathy for them and hope I never experience similar situations.
Dismissing the rude
There will always be those who are gonna view ostomates as folks with a disgusting disorder. I saw that recently too, and exactly with that description. Yup, I was offended, for a whole five seconds before chalking it up to narrow-minded idiocy.
Because of other ostomates, I’ve gained the courage to, rather than be ashamed of, or hide my situation, I readily inform folks that I have a stoma and at least some of what that entails. Like, sometimes it’s noisy. That occasionally, I have to quickly find a restroom to prevent an unexpected bag failure, or what I call a BagTastrophie.
Not one person has yet been rude to me about any of the aspects of stoma-life. That comes down to my life being truly saturated with God-given, compassionate and accommodating people.
Yup—it’s good to be blessed!
3 doing nothing through rivalry or through conceit, but in humility, each counting others better than himself; 4 each of you not just looking to his own things, but each of you also to the things of others.
Thank you for visiting today!
I pray this edition has been valuable and informative for you! If you have information you’d like to share on the topic, please leave us a comment! Your interaction is always appreciated.
‘Til next time,
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