How far do our intellectual choices inform us - help us, to actually cope and thrive?
For most of us would prefer to be actively living rather than going through periods - however short-lived - of merely surviving our ordeals, hey!
What best unexpected happenings are you able to share?
How has the unexpected experience had unforeseen consequences?
Everyone has these - remember yours?
We have all had an absolutely unlooked-for something - that has stayed with us and grown our emotional health and happiness.
We can be intellectually prepared for our 'worst fears' - on an intellectual level of understanding: We can try to rationalize what we feel we know and undertake research and talk with family and those who are close.
We can even get to the point of having positive expectation when we have convinced ourselves that the 'trade-off' to having an ostomy with the permanent or even promised possibility of a temporary collecting bag is a better alternative to either losing our life - in severe cases and short prognosis, or leading a pain-free and non-incontinent lifestyle going forward for many who have come to the point of surgical intervention for their chronic illness.
Then there is the patient who, for a time, has enjoyed the freedom from wearing an external collecting pouch.
They have either elected to aspirate or investigate alternative, potentially continent systems to manage their bowel output.
A handful of us may have been accepted onto clinical trials of the TIES implant device - whose commercial sponsor of the device has marketing to lead the expectation of a carefree facility of a washable stopper management to open and close evacuation from an implanted collar in the abdominal wall.
Whatever our history of journey leading up to surgery, where a colectomy - whether potentially permanent or temporary is concerned, the person facing the explained but as yet untried outcome is naturally apprehensive at best - falsely undeterred with no acceptance of concern, or if truly acknowledging their situation, is only knowing what they think they know - i.e. at best the surgical patient going in for a colectomy for the first time can be intellectually informed at best.
We can trust in our God. We can trust to luck. We can place some sort of reliance on our own research and detailed best try to find out what to expect.
And so we come to the point of NOT knowing 'exactly' what is about to happen.
Our emotional state of being.
We have thought.
We have feelings.
We have hopes.
An element of anger maybe.
We even have a state of being totally and utterly scared - not knowing what to think and barely capable of processing our thoughts or acknowledging our feelings.
And many states of personal 'preparation' in between.
What are folks' thoughts before as compared with retrospectively following their surgery?
How well, how accurately, how helpfully do you feel any of us are able to prepare for our life-changing surgeries?
In my own case, I feel that it is a personal journey of exploration - one for which we are unable to presuppose how we may react.
We hopefully try to find a balanced open mind without fixed expectation but with some good intent and hopefully some gratitude for all of the team, family, and friends who are a part of our life.
Do we think we could better prepare emotionally?
Is it possible?
Can we be better managed and if so how so?
In brief, my own experience was several short prognoses, prolonged medical treatment options high risk -v- potential longer-term better gain and a pretty focused life in between all of the medical stuff.
Do some of the members here have specific thoughts as to how a more integrated interaction between those who have come through their challenges after tough stoicism and who are able to lend value in terms of experience for others - individuals both in the patient base and within the medical profession, as to what elements might be helpful on an Ostomy Resource site?
Maybe, having the benefit of integrative AI within its forum options?
BUT as a total balance with direct interchange?
So many of us were ill-prepared for realities - even those, who like me, spent many sessions of hospitalization in the run-up to the colectomy - which in my case I fought tooth and nail not to have ...... and then having healed so very very well, and having deep line feeding to make one strong enough for a scheduled final surgery. I personally underwent massive challenges when bowel perforation of an unsavable section, ruptured days before the scheduled elected theatre procedure.
..... Even after all that 'preparation' .......
I was not prepared for the consequences that followed.
In fact, in my case, it was the intellectual understanding, when undergoing my final treatment preparations for surgery actually being well in place - IT WAS MY OWN EXPECTATION, an intellectual acceptance - resignation in other words - that could, IN NO WAY HAVE PREPARED ME FOR THE HEAVY CHALLENGES THAT ACTUALLY FOLLOWED.
But, notwithstanding any chapters of one's journey, there are STAGES OF RECOVERY AND GENUINE GRATITUDE - AMIDST FRUSTRATION that EVOLVE!
As I have said elsewhere, the CONCEPT OF EVOLVEMENT through our own involvement with others - IS PART OF LIFE!
THE QUESTION THEREFORE IS HOW - IN WHAT WAYS - CAN WE INTERCHANGE TO BETTER PREPARE OURSELVES AND THOSE WHO HELP US?
What ideas do the membership have for possible resources that would add a specific extra dimension of understanding for newbies and seasoned ostomates?
For example, would an interactive SWOT ANALYSIS - Strengths, Opportunities, Weaknesses, Threats, that we may be able to move into two columns according to our own circumstances? Would something like this be a helpful tool to use to aid our thoughts?
Would all products from all manufacturers being viewable in one place be helpful for comparison - rather like the positive and negative columns where we might check off options as we either prioritize their selection for sampling, and subsequently our reviews of how we found them?
Could we perhaps use the AI - as is perhaps being tried out on a number of sites to categorize, monitor, and place helpful selections - Google has been doing this for decades - on our search engine use. There is nothing new about AI - but what is evolving is its INTEGRATION REALTIME.
It is the human story that helps, through empathetic exchange to grow a more gentle understanding.
And it is within these environments - such as here - and elsewhere, where sharing takes place, where there is likely CHANGE in an active sense, - for in sharing we foster that change - gradually, by degrees.
And so it seems to me that those folk who host such environments as MAOstomate and invest in site development - with related resources, who will actually facilitate the difference.
It is up to us, you, me, and all folk who interact, it is our willingness, to learn, and to expose our own vulnerabilities - BUT WITHOUT PLAYING THE VICTIM - It is the very membership who ARE, LIVE as we all key our words and thoughts, RIGHT NOW - it is US who COLLECTIVELY aid change over time.
Thank you, administration and the developers and investors who facilitate our exchange today!
I do so very much hope, that this site - as others, are able to continue to evolve - especially with the development of resources within AI applications which WILL I BELIEVE AID OUR PERSONAL ONE OFF SHARINGS TO BECOME THE EVOLVEMENT FOR POSITIVE CHANGE AND GREATER INTEGRATION ....
Just perhaps, as the death of the search engine as we know them, and the integration of the neuro processor - maybe then, truly, things may change - for AS WE ALL CONTRIBUTE THEN SURELY CHANGE WILL EVOLVE - BUT just PERHAPS IN THE FINAL ANALYSIS MORE humanely, notwithstanding the integration of machine learning!
KEEP UP THE FACILITY PLEASE - for we are ALL GRATEFUL FOR IT
BTW My actual answer to my own question is - Yes, I do think we can go some way towards broadening our emotional intelligence - to the point of keeping it open and NOT falsely defining expectation.
And further, I think - with some collaborative input from the membership base of resources such as MAO we may begin to develop some helpful and powerful tools to aid the process.
Thanks,
Jayne
