Inoperable bowel obstruction-along with other complications. Help!!!

[DaysLikeTheseWeLearnToLiveAgain]

Following on from a previous thread. My poor FIL now has his latest stay in hospital this time with a bowel obstruction. Due to his other health conditions

See previous post:- How long does he have? Kidney failure and Perforated Gallbladder www.mumsnet.com/Talk/general_health/4919652-how-long-does-he-have-kidney-failure-and-perforated-gallbladder

He has been told that he needs an op but he will not survive it. So unless his bowel clears this is the end of the road.

Now here lies the frustration he hasn't eaten anything since Tuesday (nearly a week ago). He's has a NG tube to help relieve the pressure on his bowel and is only allowed fluids. He's been given antibiotics and is very sleepy but no one is telling us how ‘the end’ is going to look cos there is a small chance this might clear.

We’ve had conflicting info as one consultant has said that he has had the DNR chat and wants us to be aware but there has been no chat yet about palliative care cos of the small chance it might go and another consultant today saying he might get home in a few days. The man is bed bound! maybe he means home to die but it wasn’t clear. Obviously we just want him comfortable and not in pain but we thought there would be talk of hospice.

This has been a long road lupus diagnosis, pulmonary embolisms (he’s currently off his warfarin) immune system deficiency, stage 4 kidney disease (might be in stage 5 now with all that’s been going on) a perforated gall bladder and now this.

Basically my long question is has anyone else gone through similar? Has a family member/ friend had a bowel obstruction that can’t be operated on? And if so what happened?

I know everyone is different and I hope we will get some answers soon (DH at the hospital again now) but the poor man just wants to go in peace.

If it comes to it one of us will go to the hospital and sit with him all day till the consultant comes round cos so far we haven’t been able to speak for them for an update.

Any similar situations and experiences appreciated. Sorry this was long.

FIL (84) has three different cancers (one of which is grade 4 bowel lymphoma) and was recently in hospital for a month with a bowel obstruction, faecal vomiting etc. He was nil by mouth for almost two weeks when they finally decided to operate. He amazingly came through it ok and very frail, has gone home at his insistence.
They're now planning radiotherapy. Already had six rounds of chemo. Prognosis is poor. I don't know what to think.
I'm a HCP and a few weeks ago wouldn't have given him until Xmas.
I'm sorry you're going through this.

@tokesqueen my goodness. It's a lot isn't it. I hope one day we will have a more informed choice and can go out so to speak in a more dignified way on our terms. I hope he is onboard with it all and wants it. We can only really be there to support decisions I guess.

Obviously it's a very difficult discussion but I personally am all for it. Informed decisions and choices and in some cases a get out if absolutely necessary.

We may be complete idiots but watched a time to die on ITVx the other night it was a very hard watch but with other family members with life limiting and terminal illnesses I can very much see the benefits of these choices.

Anyway, I wish you and your family all the very best and to all who have commented I thank you for helping me process all of this and for giving us some much needed advice.

I will keep you all updated on what happens.

I'm so sorry your FIL and your family is going through this.

I came to read the thread as I have a parent with bowel cancer who is now getting frequent blockages. It's tough going.

Wishing you all the very best.

I'm sorry @Cranarc that's really tough. I hope you get a few answers here. Sending love and hugs.

Update

9am - doctors said operation is going ahead FIL is on the list and will be done this morning at some point.

Consent forms done last night anaesthesiologist will be round soon to discuss again in more detail.

9.45am - yes not 45mins later the bowel doctor called and informed us the operation is cancelled!!!

We are at our wits end have no words but tears. DH said his goodbyes for the 5th time) in person Boxing Day and again over the phone this morning.

The surgeon has done a complete u turn to saying he needs to have surgery to it to we will treated conservatively AGAIN. The risk is too high.

We are under no illusions that the same thing is going to happen which happened weeks ago. His NG bag output is less and his kidney function has improved so let’s try him on mushed up food. He then will start vomiting again and it will go Pete tong exactly as before.

We think all his doctors are arguing over what is right. He is such a complicated case but the miss communication this morning is unforgivable.

We are making an official complaint with PALs. There are no words my poor FIL is distraught and said he can’t carry on like this.

As previous posters have said this is where we really go wrong in the way the government push the NHS ‘keep people alive!’ When in actual fact this poor man is going to die soon and just needs a dignified death!

This Christmas has been utter hell and we just want this man out of this torture.

We feel like we’ve done all we can talking to palliative care and they just aren’t interested and want to kick this man to the curb!!!!

I have read your posts with growing sadness for your distress @DaysLikeTheseWeLearnToLiveAgain

Can I just ask whether your interactions with the Palliative Care Team are all with the Hospital based team or have you spoken to your local Hospice team?

I have worked in the Hospice movement, albeit 20 years ago, so know that the relationship between Hospices and the Hospital Palliative Care team varies, location to location. As do the services a Hospice can offer.

But, I have been in a similar situation twice.

DM & DH were both close to end of life, with complex needs, but the pathway to the Palliative care they needed, was blocked by obfuscation and hesitation from the hospital team.

On both occasions I went straight to the local Hospices (two different Hospices) and asked for them to visit and engage with the hospital Consultants.

And on both occasions, despite some opposition from the Hospitals concerned, my family member was transferred into the care of the Hospice and able to die pain free and in peace.

I don't really want to give details of the complexity of their medical issues publicly, but will happily share through PM. Suffice to say you may be very surprised just what a Hospice can and will be able to manage medically.

My thoughts are with you !!

Thank you @Tremblingmadness I'm very sorry for your losses. Thank you for replying.

It is with the hospital palliative care team we never thought about going direct to the hospice itself. I will definitely speak to DH and his DS about this thank you x

@Tremblingmadness thats a very good idea, both our hospice consultants were employed by the nhs and worked both at the hospice and the hospital so we had very good communication between the 2 …obviously as hospices are charities it can vary quite a lot between areas and there are different structures/relationships.