Making a Living Will: Seeking Advice on Defining 'Enough is Enough'

Hello

My question of the Membership should not be viewed as a negative one - but rather as a discussion concerning the elements involved and at what points a personal 'get on/get off' comes about.

My own circumstances are those whereby I am continuing to have intermittent blockage symptoms, despite careful diet and routine management over time - i.e., I am an experienced patient having had my ileostomy for over 45 years - and I am still a motivated positive person looking to take self-responsibility seriously as I do not have family other than my current partner.

Back in 2019, I decided to put myself forward for the TIES clinical trial - based on partial understanding of how advanced/successful the implant was. Sadly, I was subsequently saddened to learn that there was no previous success in terms of ongoing working implants within patients when I had my CO3 version implanted on 19th May 2019. My body continued to 'host' the device until it was explanted on 5th September 2019.

Moving forward along the timeline - added to the above, I was also a Crohn's disease patient - albeit without active symptoms for many years prior to my joining the CO3 Clinical Trial Patient Body!

The TIES device is now acknowledged to be unsuitable for any Crohn's disease patient.

I now find myself at the end of May 2025 - some 6 years after having hosted the device back in 2019, still trying to recover and looking towards managing further reparative surgery and considering my options going forward.

It has been advised that due to significant adhesions and potential surgical complications, as I do not wish to find myself in an ever-decreasing quality of life, should complications ensue, that I make a living will to determine when, and in what circumstances I opt not to receive further medical treatment/interventions.

My question to the Membership is, of those members who have found themselves in situations where they have received advice concerning potential complications of further multiple surgeries, how have folks gone about their own research and receiving guidance as to defining when 'enough is enough'?

I realize, and respect the Membership and open forum boards, that this is not perhaps a topic for people to freely voice their own personal decisions, and I appreciate that it may be a preferred option for a private response: In which case, please initially respond on the forum and feel free to request a separate message from me in the event you feel you may be able to share how you have worked through your own version of my particular question.

I am grateful for any feedback that folks feel they may contribute - thank you in advance.

Jayne

UK

Hello Jayne.
Thank you for raising this topic for discussion.
Unfortunately, I am opting for a non-writing stance at present because my personal circumstances and commitments mean that my time is taken up with other things.

However, in the past I have pondered long and hard on the issues surrounding living wills and the contemplations and decisions surrounding them. This culminated in my book 'SOD: Self-Organised Death' (2018).
If you would like to read my ramblings therein, I would be pleased to forward a copy to you either by email or by post.
I do hope that others on here will try to address some of these issues as they would seem to be some of the most important ones in our lives. 
Best wishes

Bill  

Thank you, Bill - I have replied via personal message.

BW

Jayne

Interestingly, my husband and I were discussing this very topic yesterday. We are both of the opinion that we would not want to be maintained past the point where we were "us." We watched his mother decline from Alzheimer's disease, and that's no way to go. Without our minds, we are no longer "us," and there's no meaningful quality left.

We don't want to be maintained on machines when there's no hope of recovery. And we don't want to live in so much pain that the pain meds are leaving us comatose all the time when our condition is terminal. A period like that with hope of recovery is acceptable, but not when it will be the sole experience left to us.

I could live with illness as long as there's a fight to fight. Even if that illness robbed me of some quality of life... paralysis, going blind, losing a limb. I'd mourn those things, but I'd soldier on.

It's hard to capture in words, but sustain me until there's no life left to live as me. Then let me go with dignity.

Living will and organ donor here. Take what you need, burn the rest.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Why was that TIES device implanted for six years if it is unsuitable? Would further surgery be a good idea or not? I wish I had the right answer to that. I am sure some others will have. Bill is a wise person; his book will be quite revealing. I was never a deep thinker. Let me discuss it with a very good doctor whose advice I always seek and what they call a 'Guru.' I will get back. All the best wishes.

Bowsprint,

Thank you for your interim response..... TIES only remained in my body for a relatively short time - as I mentioned, from mid-May to early September 2019..... So the novel TIES device did not remain in my body for long.

My surgical journey, however, to fully recover after that short hosting period has been a longer process - which continues!......

As readers may appreciate, it is not only the immediate 'damage' period one lives through but also the post-explant period when reparative treatment needs to continue to treat the affected body where the device was once sited.... each subsequential surgical intervention has its effect - no matter how carefully treatment proceeds.

My timeline photographs showing the reality of the TIES device and the effects my body underwent are self-evident - and it is for this reason, i.e., to ensure that Crohn's disease diagnosed patients think very carefully before considering the possibility of putting themselves forward for clinical trial subjects - they are NOT intended to scare or be sensational in any way - but merely to exist so as to provide a balanced resource for inquiring patients to access when researching TIES and other cutting-edge innovations.

So, just to clarify, six years on [at the time of keying this post], the effects of hosting an unsuitable device continue to affect the ongoing challenges which remain - 'to try and manage the body as well as possible'.... including further surgical intervention!

The specific finer points of where the medical team identifies the points on one's recovery timeline when the patient is still within the postoperative hospital environment can only be determined by the medical professional/legal medical professional au fait with the particular case within their care - BUT the skills and honesty to pre-identify at what point the patient's acceptance changes is complex - and for those of us determined to try and define and take on that decision requires due diligence and an involved depth of understanding - both of one's treatment plan(s) and one's own medical state of being.

It is this depth of understanding and preplanning we are considering so as to prepare ahead and alleviate our real concerns - 'What happens and what to do in the worst scenario': By doing this and making appropriate definitions, it allows one to 'understand what is right for you - a personal process' - so one may go into surgery knowing that the appropriate decisions are in place which are best suited for us and the circumstances pertaining at the time of our in-hospital stay - or any ensuing, related occasion when treatment decisions may need to be made in the future.

The purpose to pre-define is to ensure our own wishes are adhered to and to overcome situations where one may become less balanced and less mentally capable of a decision: Also, by having an advanced definition in place relieves the anguish of those close from needing to take responsibility for making such decisions on another's behalf!

Many folk feel mixed emotions when called upon to make decisions, which, in my humble opinion, are best made by the patient themselves!

It is a hard call - but I believe a spiritually and caring advancement to undertake this responsibility - peace of mind allows a particular 'freedom' and grace to develop, preparing us to go forward without regret and 'unfinished business'.....

An openness and trust in the future is helpful..... and if this can be achieved, it can only be a good thing for all concerned.

So in this thread, it is my intention to open up and encourage not only myself but others too, to consider these questions and arrive at appropriate decisions that are suitable for the person concerned - the patient!

Thank you for your input - it is appreciated - and I believe a subject worth advance consideration by all of us.

The writer is a 'Responsible and Positive Crohn's Diagnosed Patient' - Asymptomatic CD-wise for many years.... A person with many things left to DO in this life.... who remains focused and prepared to make difficult decisions for the benefit of 'Those Close', her medical team, and herself.

A personal understanding of the realities of a potential slow decline is wishing to be negated..... and so the current dilemma is being addressed!

A love and respect for others and the need for self-responsibility is being considered here.

Photographs of the TIES device will be included within my profile pictures - prior to my going for surgery - for the benefit of those who follow with bowel issues wishing to investigate further.

Best wishes

Jayne

UK

Hello Kitty

I have offered blood many times - but as a Crohn's disease diagnosed [genealogy irrespective of active symptoms] my blood has been declined - which is a responsible thing I guess in order to keep the blood banks as 'clean/clear' as possible.

Maybe at some point some part of the carcass may be of use when I no longer can actively use it!

Thank you for your input

BW

~ ~ ~ ~ ~ Jayne ~ ~ ~ ~ ~

I think Susan T. has put it in a nutshell. To carry on if there are benefits and to ease off if there aren't any. It's a tough decision; hopefully, you will reach the right one. All the best wishes.