An 'Other-Worldly' Heart-Centered Experience Before My TIES Device Explant Surgery

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Jayne
Apr 06, 2024 2:05 am

A while ago...

Today, 26th July 23, I had the courage - was drawn to make this journal copy of my journal entry of September 2019...

And have debated about posting my experience - lest I might be thought 'somewhat fanciful' - as this forum is not really the place to recount a spiritual experience.

 

However, it has taken me quite a further time to resolve to share what I believe to be an honest account of what happened, and as such, I have decided to post this now, because if I go for my forthcoming surgical intervention, and I am not able to record my experience, it may be 'lost', but most of all, yes, I believe we - collectively - can all learn from this.

 

Lately, I have been challenged further with blockages and am currently taking only liquids in an attempt to resolve and 'clear' my bowel in readiness for the reschedule of my second repair intervention.

 

And so today, the 6th January 2024, I have decided to publish my post to share with fellow warriors in the hope those who read it may have some resonance with what occurred.

 

Please be gentle of heart and open of mind as you read on - this is not one of my shorter posts!

 

 

In our depths of despair when facing our mortality, a happening does seem to ease us through the eye of the storm...

And sometimes we witness we know not what?

 

This is what happened:

 

A sort of related happening occurred when I had a need to 'release' on the eve 
prior to the day of surgery for my explant of TIES device in September 2019.

I just left the ward - after explaining to the nurse in charge where I was going - 
and walked to the exhibition hall/large atrium space within the Leeds Hospital in the UK. 
... I needed a sort of freedom from the heavy 'containment' within the ward 
whilst waiting for the morning to come and my explant surgery.

It had been quite a day - earlier, I had experienced an extended 'spiritual exchange' with a particular surgeon 
during the afternoon... and later, when visitors had left. I "found" myself 'up a mountain, within heavy mist, 
on a narrow ledge secreted within a safe cave' in an 'out of body' experience coping - completely on my own -
having changed my implant cap for the very last time... fighting infection and deep sinus ulceration of my abdomen. 

 


I was in the depths of despair!

 

With a feeling of intense sadness and bereft - for although never having had children, 
the upcoming explant was in some measure akin to losing a baby whilst expecting to give birth - 
the 'baby' being the surgeon's experimental new 3D-titanium printed version of the TIES device - 
and what I was experiencing was that loss of shared hope and need for the future - 
my medical future that entailed the failure of my body "not being good enough" to host '
'his' device any longer within 'my' body - [both spiritually and in physical real time]... 
It was in fact the precursor of a 'bereavement'.
For I held such hope - even up to the ninety-ninth hour - 
The impending loss was such a blow!
Both for myself, for him and - I felt - for the potential of patients who were to follow.

[At that point, I was unsure whether the clinical trial would continue in view of what happened to me - without a rethink/redesign of the 'device' - because, although very real in terms of my medical real-time manifestations within the abdomen - and probably, I feared, deeper within the gut too - I witnessed the 'denial' of what was happening in reality - upon presenting myself within the clinic - [despite the daily emailed submission of photographs for the trial data file via my consultant's email!] I was rather more naive then - in matters to do with the clinical trial environment - especially as a 'first' lab rat patient! Little did I think such cutting edge - unprepared reality - was par for the course!]


Anyhow, one just needed a little 'freedom' from the intense remorse and inadequacy, 
some kind of 'easement' for what was to happen in the operating theatre the following morning...

 

I did not know at the time what was to follow: it was in fact the very beginning of my journey to acceptance for what was to come.

 

There was a new staff on that evening - who, without questioning me, immediately recognized my need 'to release'.

 

I left the ward and walked. A bereft soul within my broken body - 
unsure of what I knew to be a lesser result than that which I had hoped for... 
And hoped for, not only for me, for him, but for all bowel patients following in my journey with TIES like me... 

I

had held expectations - of TIES - rather misplaced it transpired!

 

I walked along the long empty corridors of the hospital in the middle of the night shift... all deserted.

I eventually arrived within the exhibition entrance hall, and walked the long wall, going through the 'disconnect' 

of emotions of looking at the artworks hung there - devoid of 'emotion'... not really SEEing - 'facing', but not 

really "looking" at all!

I was pausing at one or two of the artworks - engaging in a very limited manner with my surroundings.

 

I then came upon the black grand piano that was central within the space.

 

And, I sat down - completely alone in the space seated on the piano stool.

And I just 'sat'
 
'lost' and very much alone, my partner and my spiritual surgeon having left the hospital... and I having left the night-time

ward in some sort of 'limbo'.

 

I was waiting for the morning to come but was devoid of sleep or any desire for anything!

 

Sitting, alone, in a deserted public space, on a piano stool.


I cannot read music. But as a child and young adult, I had been humbled by and enjoyed the ability to listen and then 
"play by ear" - as the family usually had classical music within the home, and my mother played the piano.

After my mother died - [just before my own original colectomy surgery - prior to my 25th birthday] - I ceased to play the 

piano. She was no longer playing at home and somehow I felt I no longer wanted to play - and so did not!

...anyhow, that is just the back story i.e. I am not a musician and not an adept player of a specific score. A

And did not have a piano at my married home either.

 

As I said, on that night in Leeds, "I" sat down. 
Hardly aware of the "I" element of me.

 

As I continued to sit down I opened the lid and my hands touched the keyboard, tentatively at first.

I played - tentatively at first and then I was not aware of any mechanical happening - I just continued to play from somewhere within.

And I played for some extended time [near on a couple of hours I learned later].

It was as though someone was playing 'through' me.

I was humbled and 'QUIETENED' and although I was vaguely aware - but only 'sort of' - 
of a number of people sat around - I was not feeling a part of the physical space... 
just FEELING THE MUSIC that was happening.

I gradually found my spirit settle, I remember smiling and feeling "secure and loved" 
and felt touched by those who were sharing my experience within that space.

 

I remember just walking from that space - like walking within sunlight back to the ward... 
and my 'reality' within the hospital gently coming back to me, in-between dappled shade 
and the reality of the wide, quite cold, but heated corridors ---- 
I became conscious of using my mind to navigate and remember the route back to the ward.

I went into the ward - touched base with the night staff, and as it was getting light, 
lay on the top of my bed, and slept.

 

It was not until some days later when my partner, who was in Leeds during my hospital stay 
having accompanied me for my surgery, encountered a patient, whom I had seen on numerous occasions 
walking the grounds - dragging one leg and asking passing folk for support... money for coffee, or whatever...

Only on the afternoon that as we, my partner and I, were leaving the hospital and going to the car park upon discharge - did my partner once again give the change he had in his pocket and it was then the patient spoke to me
did I recognize this patient whom I had seen wandering the hospital grounds...

But it was only through the recall of my friend... he had given this patient some coinage for a coffee, prior to the day of my surgery - that I subsequently 'made the real-time' connection with someone who had been witness to the events of the piano playing!

.............

On the occasion of my own discharge as I was leaving for the car and to journey home did we once again - this time together - encounter the same patient - who thanked me for the 'playing'.

..................

The 'patient surprised' us both... but humbled me to my very core!
...................

Because, 
I had not made reference of it to anyone - outside of the experience.

I FELT VERY HUMBLED AND CONNECTED.
This was the stark reality of physically leaving the hospital - crossing the forecourt to go to the car to journey - in reality - home!  

Still within the hospital confines... but focused on returning to the hills - away - and returning to my rural environment!

 

Stark - yet I was still on some high after the explant and the presence and resonance of my surgeon friend who had been there for me in anesthesia and within theatre whilst the surgical team operated.

 

I still - to this very day - do not fully, consciously, "know" what happened that night/morning and the experience I shared on the trolley in the presence of the anesthetist with my surgeon friend - prior to entering theatre and team's commencement. excising on the operating day of my explant *... For I carried his contact energy* flowing healing, well-being, for many months! -

 

Initially, it * 'overrode' the physical pain during the long car journey home [many lanes and many stops en route - from Leeds to Mid Wales.

 

  • The day of my intense encounter with my surgeon friend, [who had flown into the UK for my Monday clinical appointment - two days prior to my explant] - the late morning and afternoon shared in grounds of the hospital, the day before the explant; the evening of the cave retreat to safety on the mountain ledge [although this had happened before - and was a place both my surgeon friend on his own account, had also been]; were very special and hitherto not experienced to this degree before.
  • Although shared and exchanged remotely during the process of hosting the device
  •  
  •  
  • the very different experience 'later release' of once more being able to share the pure joy of music THROUGH my being.. 

which had been devoid of expression by me for many many years.

When I was en route to the car park, actually leaving the hospital for the return journey to Wales, 
- I was still in a heightened 'state of awareness'... which, although fading, is still an accessible 'state' for me 
The 'auto piano playing through me was a wind down process - for my surgeon friend was also 'there' for me ceasing 

the turmoil of emotion and surrender in anesthesia approaching theatre excision among the network of sinuses 

expelling through the abdomen. 

I was so, so very grateful to have him physically present, prior to and during the explant excision work.

Now just short of four years on, after that day, and the days that followed... 
FOR I TOOK THE FIELD OF PROTECTION IN WHICH I HAD BECOME ALIVE, HOME WITH ME WHEN I LEFT THE HOSPITAL 
- IT FILLED THE CAR AND HAS REMAINED WITH ME - 
I can still 'touch' those intense feelings of being loved - unconditionally at a very deep and intense level.
a particular STATE OF INTENSITY AND AWARENESS - A NEW LEVEL OF ALIVENESS!

I have learned not to question in retrospect, and just accept certain 'happenings' for the use of a better adjective.

It is part of being open and learning to let go... It was always much easier as a child - 
for one did not have an intellectual consideration of the present - one just accepted and LIVED FULLY THE 

MOMENT.

Some experiences are best left 'in the moment' - for outside they differ in understanding and intensity.

But WHAT I FEEL is still very special.

I am very blessed to have been able to 'discharge' through that piano. 
And also touch and share within a circumstance.

So too is my humbleness of FEELING and ongoing experience of the support and unconditional love 
from a particular surgeon who is a very special person indeed... And, for the record, who is outside of the 
lead investigators' NHS surgical team who actually operated and performed surgery within the TIES COIII clinical 

trial of TIES conducted within Leeds Hospital in the UK.

 

To those of you who read and post on this site, thank you for sharing, through your own posting, 
your own particular FEELING and TOUCHING understanding that comes about when an unexpected happening 

arises.

Awareness - it can happen when least expected and when open to 'allowing' oneself to leave fear and just BE.

For it helps those of us who find ourselves in a different space know that we are not alone!

And sometimes, we are exceptionally blessed - through no direct action upon our own part - 
for we FEEL and SEE the luminosity in ALL there is.

There are some very wise and gentle folk on this site who have a unique ability to not only share - but express 

themselves far more eloquently than I - through verse - or within their articulate text for the support and benefit 

of all of us.

Just sometimes, when all is just "too much" some FEELING is 'seen', and perhaps really 'felt' or smelt in a particular 

lingering sense, and an aliveness of SEEING our encounters in a luminosity which lifts our sense of really BEING 

ALIVE TO WHAT IS make us who we grow to BECOME.

Yours very humbly.

Best wishes to all who come to this site for howsoever long...

I am most fortunate to live and be able to commune here.

Thank you to all who make this possible.

IN gratitude, and without judgment...

thank you.

Jayne

 

PS

 

Please do not post any immediate response to this post - It has taken a deal of courage before I have been able to share this experience - I do not wish to be 'labelled' as a consequence - Please just accept and take it for what it is - a learning on my part, to share what has been - and continues to be a very challenging journey.

 

Thank you for your kindness, and a reader's refrain from unnecessary comment.

Should you wish to privately message in a supportive manner - then TY - but please do not post any negative thoughts - these may be best kept unsaid.

 

Thank you from my heart.

 

We can be grateful for many things in life and when we have occasion to find ourselves in new territory, we may be apprehensive, scared, nulled of feeling, and sometimes our gratitude takes on a different experience altogether - a kind of awe, and a deepness of gratitude like no other that we have experienced.

Jayne.

 

I am still hesitant in submitting my sharing - but here goes.

 

Please be gentle.

CrappyColon
Apr 06, 2024 3:20 am

Thank you, Jayne, for sharing an experience that is deeply personal for you. 💜

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First off, this is a pretty cool site with 33,972 members. Get inside and you will see.

It's not all about ostomy. Everything is being discussed.

Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Bill
Apr 06, 2024 5:17 pm

Hello Jayne.
Thank you once again for permitting me to post my message to you on the open forum. I have said several times in the past that I prefer to correspond in this way, as it gives other people the opportunity of participating, if only by passively reading the thread. Occasionally, some people will even acknowledge that they have done so by ticking the 'like' icon, which I find a most satisfying expression of approval. 
Best wishes

Bill 

Below is a reproduction of my message:

Hello Jayne. As per your request, I am messaging you rather than posting a reply on your latest post. Just to say I enjoyed the read, especially so as you share the sort of experiences that most people are reluctant to share with others, in case they attract ridicule or criticism. Many people(especially adults), tend to have more closed minds than children and, as a consequence, do not, or cannot, fully appreciate the effects of 'happenings'. Speaking personally, I feel blessed when these unusual things happen, as they open up whole new perspectives and dimensions on life as others know it. Of course, there will be a few people who might be negatively judgemental about these things. However, they are usually people who have not 'been there' themselves, which logically and factually make them 'ignorant' in such matters. Your post comes across in such a way as to imply that you enjoyed and appreciated the experiences. This approach is one that I also adopt, as these things seem to come our way for a purpose, which is sometimes obscured by 'a whole host of human hang-ups'. Which has given me a great concept for another rhyme so I must away to conceptualise that further.
Best wishes
Bill

aTraveler
Apr 06, 2024 10:08 pm

Jayne, you probably mentioned it in a previous post that I didn't see, but could you advise me what TIES is?

It took courage to discuss/recount a spiritual experience since many people that have never experienced one easily dismiss them. When I was in the throes of unbearable pain, I laid down and told my wife that I was done — I couldn't rest or sleep. But then something miraculous happened. I was in the presence of my grandmother, who had deceased 34 years prior. She told me to keep my eyes on her and she would guide me through the pain. She held my hand and we just talked. She had a bucket of field peas and we sat and shelled them. When the experience ended, my pain had lessened and I was finally able to get some sleep. Members of my family doubted that I could have such a spiritual experience, but it didn't matter because I know what brought me through.

Jayne, what you experienced is what you needed at that moment. God bless you.

Axl
Apr 06, 2024 10:25 pm
Reply to aTraveler

https://ostomycure.com/ties-information/

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
aTraveler
Apr 06, 2024 11:10 pm
Reply to Axl

Thanks, Axl. I never heard of TIES. I have a colostomy, therefore not something available in my case.

Jayne
Apr 07, 2024 2:48 am
Reply to aTraveler

A Traveler,

 

Thank you for your comment and indeed sharing your own personal experience at the height of your pain. IMHO, within our psyche all sorts of happenings may be experienced, and according to our belief systems, we are subject to manifests. Happenings in which we become a part, sometimes as a transmitter and sometimes as a receiver. Whether others 'believe' or not is immaterial. The recipient who has engaged within such experience receives what is needed for the time in question.

 

Some of us have respect for what IS.

 

Blessings, and a virtual hug.

 

 

 

TIES [Transcutaneous Implant Evacuation Solution - TIES®] is a novel implant device currently under medical trial, being a concept product option for a controlled 'bagless' waste management system for the ileostomist.

It may be referred to in some quarters as a 'continent system,' as in continence, 'the ability to control the discharge of body waste from [in this instance from the small] bowel.'

More info may be found at the sponsor company's marketing website: ostomycure.com

 

Please bear in mind that you will be visiting a lifestyle marketing website carrying selected data, and, with the greatest respect, one's own in-depth research and personal knowledge of the product and the 'process' may not necessarily reflect a similar understanding in all respects. Without any negative intent on my part, it might appear that statistics may be misleading at times in certain applications and circumstances, according to how such data is selected, promoted, and interpreted.

 

Within my profile, more info may be found with links to a few of my posts on MAO here in the forum.

 

Please feel free to message if you so desire by clicking on my profile icon. As a Premium Member, 'Send Message' ..... [if not, you can always ask a question within the forum, and I would be able to send you a message to which you would be able to reply.] There is limited information I am able to share because since my explantation in Sept 2019, I have little up-to-date information. By definition, a trial of the product is ongoing and likely to involve modifications, especially as technology now allows for bespoke improvements which may be relatively easily brought into the equation. One is not a professional medic, merely an early, first in the UK, recipient of the device.

But I do have over forty years as an ileostomist and experience of Crohn's Disease when first diagnosed in the early 1970s.

Sadly, for the researcher and from the patient body perspective, the TIES clinical trial is a single body closed clinical trial.

[Meaning an ongoing patient recruitment of volunteer subjects referred to as the single patient body.] [Closed trial meaning that there is little information publicly available for public access within the Government Trial website, and the sponsor company is not obliged to publicly publish the declaration of its findings to the regulated body to which all such clinical trials are obliged to report.] Accordingly, there is limited independent data available for inspection by the general public.

The clinical trial stage of a product or drug, etc., is the stage following animal/laboratory testing where a select number of human subjects are in receipt of the product or drug. The TIES device is not available for use within the clinic for general surgery. It has not currently [April 2024] got its CE certification. Only its ISO accreditation is presently quoted on site, so it has yet to be subjected to more rigorous trial before becoming a commercially marketed device for implant and becoming available for patients who wish to have elective surgery. Currently, it may only be used within the clinical trial environment. The US has its own medical testing criteria, and TIES is not yet available under clinical trial in the USA, so far as I am aware, but it is being trialed elsewhere. See the sponsor's website for further info. And the TIES clinical trial is an industry-sponsored trial, hence Ostomycure pays for its product to be tested by such organizations as the British NHS. Ostomycure AS is a Nordic-based privately owned medtech company attracting research funds and private investment. Stoma appliances are a multi-billion dollar industry, and as such, there is significant interest within such a market.

 

As a concept, as I have iterated many times, the concept is an attractive one and a logical step forward. It remains to be seen how this research and medtech development moves forward. I personally wish it the luck that it deserves and will continue to champion responsible research and development, for without such there can be no progress for the bowel patient in need of surgical intervention.

 

Thank you for your contributions on site. Your valuable sharing is much welcomed :-))

 

Best wishes

~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~

from a Mid Welsh Hillside in the UK

Jayne

Bill
Apr 07, 2024 8:13 am
Reply to Jayne

Hello Jayne .
Thank you for taking the time and trouble to explain the TIES system again. I feel you do this very well and so diplomatically.

For my part, I have little reason to be diplomatic about such a device being marketed as 'a cure', when it is clearly aimed at 'managing' the problems rather than 'curing' them.  This apparent attempt at deception from the outset, made me wary of this company from the start of my research. Other indicators of sales techniques (& potential deceit), became apparent the more I looked into the trial (which seemed to be more interested in secrecy than openness about potential problems).
My only comment at this stage would be to quote the cliché: 'caveat emptor' (let the) 'buyer beware'.

Best wishes

Bill