Advice please : Hi hope everyone is... - Oesophageal Patie...

Oesophageal Patients Association
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Advice please

Valerie01
Valerie01

Hi hope everyone is feeling well

I'm just looking for a bit of advice my husband Peter is going to have his operation esophageal cancer and that's on 16th March but is there anything that we need for when he comes home for example how do we get the bed on a 30deg angle for him sleeping will he have feeding tubes when he comes home I hope someone can help and advise me thanks for reading this post

23 Replies
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Still a month for the surgery.

Dont know where you got the degree element.dont street too much.

Of course the Oesophagectomy patients are discharged normally with feeding tubes as plan B for some times even if some of the patients start oral intake before discharge.

Main focus be on getting the discharge from the hospital on protocol time without any complications. That's a success.

Rest all falls in line.

Good luck.

Oh I red it on hear that ppl have to be at a 30 deg angle yes you are right I need to concentrate on getting him through the operation but that bit is out of my hands and I just wanted it to be all he needs when he comes home thanks for your reply

You are doing right things, gathering information to prepare. Super. Wish you both all the best and hope everything goes smoothly for you two.

There is tonloads of information on the previous posts in this regards, suggest going through it all. Very useful info already there.

Spring will be around the corner by the time Peter comes home, so it will be nice weather to start getting fresh air walks. That's good.

I have recently bought the pillow using OPA discount and use extra pillows on top of it . Some people use bricks to elevate the bed support, some use electric beds, I use stack of pillows at places I travel.

Suggest not going into too much panic mode either with excess of information. As every patient reacts differently to the surgery and recovery. Offcourse basic underlying common for all.

So wouldn't suggest spending too much money in buying things right now, waiting for the recovery time to start would be sensible approach. In my view.

The weight loss from the journey to surgery and back home will dictate the things to be done or tried at that point in time, hence its critical for all patients to go out of hospital with feeding tubes, till the time their weight stabilised and sustained in confidence without other complications.

Thanks for your reply you were helpful

Fizzy35
Fizzy35
in reply to Valerie01

Hi agree with Mauser 1905 lots of good info

Having had all this to deal with my husband last year best advice for now is get him as fit and fat as you possibly can prior to the op as it helps SO much

If hospital doesn’t give you a little breathing apparatus to exercise and build his lungs up prior to surgery you can buy one from the internet very cheaply

Walk as much as possible if weather and health allow

Leave little bowls of nibbles or cheese cubes or chocolate at his side when watching tv

There are lots of ideas on this site

Yes as Mauser says you can buy a wedge pillow but don’t rush into it yet

Watch how the nurses do his pillows to give him all the support he needs

And look at the OPA site which is excellent and has lots of knowledge /understanding /and lots of booklets available

Most importantly ENJOY your time together right now

Best wishes

Fizzy35

Sorry, I may be in the middle of a wrong conversation. Is this the surgery where they lift your stomach and tighten the sphincter? Acid reflux/hiatel hernia? They send you home with a feeding tube???? Thank you

Oesophagectomy.

Sphincter is removed, so is 1/3rd of the stomach (upper) and 2/3rd of oesophagus (or total depending upon the two or three cuts).

After this surgery the remaining part of the stomach ends in chest cavity mostly and no LES anymore. Feeding tube is obviously used for this major surgery.

The HH treatment is Nissen fundoplication where either limited part of the surrounding tissue of sphincter is tightened or all of 360 degrees. Feeding tube maybe be needed

No tightening sphincter, something else I think. I have hiatel hernia, where they lift my stomach and barretts and dyspasia so before cancer they'll tighten the sphinter. Thank you

When I came home from hospital I used to sleep upright in an armchair for quite a while, luckily I had a recliner but only used the part that supports the legs.. This gave me time to adjust my body to sleeping and eating the right way before actually getting into bed which can be a steep learning curve. In bed I first used the wedge pillow but then was given an electric adjustable bed which is a godsend.

Even now (2years later) I will sleep in my arm chair if I have an acid problem. . I take bisodol which is mild and user friendly and chew a tablet which works nearly all of the time. If I eat correctly I never get acid reflux. I never eat late and only drink water after 8 pm. Good luck.

The wedge pillow is good . I don't where your husband is having his op but my husband had keyhole through the tummy and was only cut across the back ( the famous shark bite as its called ) so actually the sitting up thing was not relevant as he was able to sleep very well without being at an angle . The advice of using this time to fatten him up is good , do it , its really something you can do and it helps enormously. Make sure he does the lung exercises when he gets back and some walking too, every day . My husband did not have a feeding tube ( he had the surgery in France ) they had him eating proper food before he was discharged from hospital , I think that in Norwich there is a oncologist /Surgeon who does this too .... its obviously a good thing if possible because mentally and physically its a return to normality and that is so important for both of you . Maybe you could discuss this with his team ? My husband did not lose an excessive amount of weight and ate little and often and I know he was very happy to not have the feeding tube when he was discharged . Prepare yourself for the massive amount of tubes etc post operation , first visit can be shocking and emotional but they soon start removing them and they had my husband sitting up and walking a few steps within 36hrs . Bon courage to both of you .

The Osaphagal Patients assn (OPA) have a discounted foam Wedge which I have, well made and with a washable removable cover, I used this on our bed from day 1 at home and still do, (19 months post op) Well worth joining OPA.

He will have the Jejostomy feeding tube left in for a few weeks but he is told how to clean it etc.

As the others say get as fit as possible, it is important.

You are going on a journey, some up hills and some down but remember that he is one of the lucky ones that can have the op ! despite the odd downs it is well worth it, my wife was wonderful and I needed her support before and after the op.

Recovery after the op is SLOW but don't despair each day/week things improve, honest.

Good luck to you both..........

Jeff

Well my husband, now nearly 85, had his op 8 years ago and still sleeps at an angle to prevent reflux. We did get an electric bed after a few months (VAT free).

Getting back to eating is hard. He used to force himself to eat the yogurt-like Fortisip provided by the hospital. And to begin with, it was like feeding a baby, except that the meals were less bland. Get plenty of little freezer containers and puree your food. Eventually he'll be eating roast dinners with everyone, just not such big helpings.

Good luck. It's hard but there are lots of survivor stories on this site.

Hi

I had feeding tube at home for a month which was only connected during sleep. Little and often soft ish diet building up to what will be a new normal, although this takes months. Suggest you get a wedge pillow with a normal one on top to start with and perhaps move to an electric bed if funds permit. You may find he will not be able to lie on the left side without getting reflux. I would say that for the first month I was very weak and just going upstairs to the loo needed a lie down afterwards! I’m now over 5 years on back to my previous weight and can eat anything although do suffer from some reflux on occasion

Good luck with everything

Hi Valerie.

I found two normal and one V pillow were enough for me,Peter will find sleeping on his back will be the only option for a while.

It's a big operation but worth it in the end.

Valerie01
Valerie01
in reply to Jforgh

Oh we have a v pillow thank you for your reply

I would add only one thing to the excellent advice you have received. The benefit I have found (now 15 years on) of blocks/bricks at the head end of the bed is that you sleep with less of a kink in your back as compared with lifting your head entirely with pillows. This gives me a 4" start helped further by pillows. Hope I have explained that adequately. Trial and error is part of the process. Very good luck. Your positive attitude can only help immensely.

Valerie01
Valerie01
in reply to sportsman

Thanks any advice at this point is good just trying to get my husband as comfortable as possible when he comes home

I went through the same thing about seven and a half years ago and don't remember having to sleep at an angle when I was being fed through the night by the stomach tube, the need for sleeping at an angle came when I got back to eating normally.

The possible reflux is very unpleasant so my advice is to get as many hours as possible between the last meal and bedtime, for instance if you like to retire at 10.00pm , have the last meal at 6.00 pm

Thank you for your reply and hope you are well

Yes thanks I'm still well and still working as a plumber age 71, I hope that inspires your husband, keep positive

Hi I had my surgery 2yrs ago in this May.Everyone is different I have found I wanted to get back to who I was.I am 68 and I used to be a tree surgeon because of the strength bit I can’t quite do that again.What I found was to adjust everything as I went along can’t do this but I can do that now.As far as the sleep thing I didn’t want to be alone when I got home.I felt vulnerable at night thinking about things it was nice for my wife to be there.My wife is a very sensible positive person she is Scottish miners daughter from Fife everything for her is let’s have a go and see.You will be a very important part of his recovery.See how things go and change things as you go along.Wishing you both well 👍🏻

LIFT CHAIR OR HOSPITAL BED WILL HELP .NOT SURE WHERE U LIVE BUT IN B.C SALVATION ARNY OR IT TERIOR HEALTH

All very good advice on here, at this stage his fitness regime is crucial . My husband had Ivor Lewis procedure in Jan 2019 & wasn’t fully prepared although deemed ‘fit for surgery’ . Also keep the calories coming in pre op, my husband lost 5 stone which he wasn’t prepared for . Im sure his team have prepared you both for this ! The very best to you both , he will need your love & support , but look after yourself too. 😘

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