Reversal Desperation Novel
Loop ileostomy, hernia, and reversal candidate here. All as a result of emergency surgery to remove a cancer-free cyst on the outside of my colon. No other bowel issues in my life. I say all this because I realize how very lucky I have been and totally understand those who have suffered with so many different issues resulting in pain and surgeries. These are indeed the true warriors... and understandably will comment on how happy they are to sport a stoma. Sadly, we all have our burdens to bear. Mine was not the case and I do not mean to sound ungrateful as I am most thankful for my full life.
I felt compelled to write this as, for some, a reversal is possible and they frequently question others for their opinions. The following novel is what happened to me.
Many of us happened into this journey with no prior knowledge of this major life-changing event. At least that was what happened to me. Within a short time of surgery, I was told reversal is possible. That statement alone was a gigantic carrot or more like a gigantic Hershey bar dangling right before my very eyes!!!
WARNING - as always - we are all different and colostomy, ileostomy, and loop ileostomy reversals may differ greatly. I know nothing of urostomy.
Personal experiences have allowed me to realize the truth in the saying “knowledge is power”. With this, I offer the following.
Do not be in a hurry to fix things too soon after surgery. Take a deep breath and first get well - both physically and mentally regarding this life-changing experience you have gone through, it indeed takes time. Next, a rush to make important decisions regarding reversal may be more harmful than helpful - think it through.
This site is sure to help you see many sides of what life experiences have occurred among those posting their comments here. It is a great resource and comfort to be able to relate to those in similar situations as your own. And of course, the ever-present WARNING LABEL - we are all different - so very appropriate… seek information but in the end use your own well-thought-out good judgment.
I feel I was the poster child (well, Senior) for a reversal ASAP. A victim of “we are going to perform an emergency ileostomy surgery tonight” and then the surgeon and his team left my room. I curled up in a ball and totally spaced out wishing for death instead. This may sound extreme but that is where my mind had gone on a beautiful September evening in 2020 and yes the year of Covid - still very thankful it overlooked me as the nurses had to practically shove my eyeballs out by way of an 8-foot-long Q-tip shoved up my nose to verify I was Covid free… causing me to spew forth some nasty expletives- not usually my style… I still haven't forgotten or forgiven them for that trauma which I now know was due to either no training or lack of experience in September 2020…
The next morning and for many months to follow, my only thoughts were REVERSAL. They said this was promised within a “few weeks”. You know what they say about promises - they are made to be broken - or on the brighter side, per Mark Twain (and probably many a good surgeon) “Better a broken promise than none at all.”
In my case, as often happens with unsuspecting carefree humanoids, I was determined to move forward at high speed towards my reversal date and nothing could stop me now from making that hideous stoma disappear from my belly - or so I imagined.
Ah, but wait, there's more… there always is… Fate (that bitch) and sure nuff' … she, he, or shit stepped in….
My reversal date changed like the weather on Mount Everest in the Himalayas. First date change was due to weather (having to migrate from Wisconsin to Florida as winter approached and I needed to be home for the reversal surgery). Next, the new Florida surgeon had new requirements. As I moved forward toward completing these requirements - the roadblocks reared their ugly heads one after another.
Then came the necessary (?) heart stents, recommended or rather demanded by a heart doc and probably Medicare before reversal could proceed. That was November 2020. Next after stents placed - and here I might add: older type version of stents were placed to allow for reversal sooner rather than later.
Stents placed in November 20' followed by HEART ATTACK in January 21'- WTF !!! Once again, reversal on hold now for approximately 6 months to 1 year. In the meantime, I am not getting any younger nor any happier about my situation. All this waiting helped me to form a better relationship with Seymour and his sidekick Squirt (my stoma and loop aka the Siamese twins) protruding from my belly. Fast forward (almost 4 years now) to my current life. Who'da thunk I would still be sporting an ileostomy - certainly not me!!! Research, this website, signs, and common sense led me to a new decision. I wrote another rant about this under “Just a sign” a while ago. Early on this journey, I would have bet my life savings on the attitude “I WILL GET REVERSED”. Whew - glad I did not bet that money!!!
Today I am still considered temporary and reversal is possible. Well at least I think so. In all honesty, I have not seen a surgeon, gastroenterologist, or anyone remotely familiar with stomas in about 2 years. Why you might ask - well I call it “a change of heart” no pun intended… Last surgeon visit was for a hernia which happened sometime late in 2021. He said hernias are normal for ostomies and was unconcerned and prescribed a hernia belt - which I rarely wear.
My ole' ticker, my ostomy, and hernia seem to have settled into my body and my brain says - no drugs, no docs, just enjoy what you have. So, this is my plan going forward until such time pain drives me to disregard my brain's advice and I will be FORCED to yell -
GET ME TO THE HOSPITAL, DRUGS, AND DOCS ASAP!!!
Emergency surgery and the following traumatic days of fear that followed I may have been briefed by my surgeon regarding my situation. I now realize, mentally, I was not able to totally grasp what was being presented. Given a “knowledge is power” scenario I was indeed powerless during this trauma and for a goodly amount of time thereafter and a real understanding of the reversal promises. It is clear to me now that I did not have a real grip on reality in regards to more surgery.
I was certainly one of those innocent souls following directions and anxiously awaiting for reversal and returning to my previously normal life. I shall interject here that there are many who do return to this normality and made the right decision. From what I have read on this site it is more apt to be experienced by those with a colostomy as opposed to an ileostomy (end and loop) and so many other variations for reversal. To this I say… it is critical to know your own shit!
First and foremost in my experiences over the last few I firmly believe we all need time to heal both physically and mentally on strictly our own timeline. After all, surgery is a very serious option and not to be taken lightly or hurriedly. Family, friends etc. have good intentions and only want us to be okay again but in the end it must be our own decision for our own reasons.
Healing first from initial surgery is most important. Once fully healed and of sound mind - then a “true to your heart” decision can be made. This of course means fully researching options with a clear understanding of the “procedures” as well as the multitude of outcomes, they are many and varied AND can you live with them? The more you know the better prepared you will be to make this, once again, life-changing journey.
