Need advice

[Valerie01]

Hi everyone hope you are all staying safe in this bad time my husband's had his operation on Monday I got to see him on Monday night for 10 minutes and I was aloud to see him on Tuesday but I was only able to stay for 1 hr this was due to visiting time been reduced by the hospital on Wednesday I wasn't able to go at all the hospital is on no visiting for anyone I dropped his mobile off so I got to speak to him last night but today he is in so much pain he has no energy not even to talk he did manage to say physiotherapy had been and he was wiped out so I just said I'd ring him later but I'm sat hear so worried about him can someone plz tell me if this is natural after the operation 3 days in I phone hospital this morning and all they told me was he had a so so night I know they are busy I'm going out of my mind hear it makes it harder because I carnt see him

[Hidden]

Hi yes he will be feeling completely wiped out I was in critical care for three days after my op and don't remember much but when I went on the ward all I wanted to do was sleep it's a very big op and takes a long time to start feeling better he.ll get there but slowly does it . Take care .

[Valerie01 in reply to Hidden]

Thank you I have spoken to him he is feeling a bit better they had had him sat in the chair for a while today then they have taken tubes and things out it just wipes him out but I have spoken with his nurse and she said hes ok and doing well they are hopefully going to put him on a word tomorrow still no visiting but it's ok as long as I know hes ok

[Hidden in reply to Valerie01]

That's good news it's a long haul but he.ll get there all the best.

[Spikey]

It is normal to be "wiped out" after the operation, but he should not be in a lot of pain. I was still on an epidural for 5 days after my oesophagectomy, and as soon they removed it the pain management team came to see me to discuss pain management.

[Valerie01 in reply to Spikey]

Thanks

[deedle]

Hi , Diane's Hubby here , I had the op some 14 months ago , the first op failed and had emergency surgery , although very poorly I did not suffer from any pain at all , it was one of the things that I distinctly noticed . Please tell the nurses and his Doctors of your husbands problem they need to know so they can rectify the situation , if you have to telephone because you are not allowed to visit due to Covid-19 please make sure that you are speaking to a person with authority and if not ask to speak to someone who can take the necessary action .

[Valerie01 in reply to deedle]

Thank you I will

[jeffw663]

Hi Val

This is a massive op, I was told that it was the biggest performed at the hospital, don't worry (easy to say I know) I was steamrollered after my I L even when I got home it was a terribly slow recovery, even now 19 months post op life is tiring, I snooze for about 1 hr after lunch BUT life is good and I'm sure that it will be for both of you.

Be upbeat when you speak to him that will be of great help to him, it's a bugger not being able to see him but he is through the op and on the long road to recovery..........

Re the pain, he should still be on the epidural, if he has told the consultant one would expect the dose to be adjusted to his needs.

Keep positive Jeff

[Valerie01 in reply to jeffw663]

They took the epidural out yesterday he is having morphine or at least that what pete tells me I will ask when I speak to hospital every things going to plan and he is due the scan today thank you for your reply it's much appreciated

[Animalmadwoman in reply to jeffw663]

Hi Jeff , now you are 19 months post op( massive congrats!) do you still get problems with nausea & diarrhoea? My husband had his op in Jan ‘19,but was in intensive care for 6 months due to a leak & all the knock on probs with organs. Against all odds he survived & was discharged last July with feeding tube etc. He lost 5 stone.

He has been eating properly for 6 months , albeit baby portions , but the misery of gut cramps & nausea make his life miserable, he’s got all available ‘remedies’ that don’t really help . Does this ever improve? I want to give home some hope! Thanks .

[jeffw663 in reply to Animalmadwoman]

I guess the reply is a Yes and No I can go 4 or 5 weeks without a 'dump' then have 2 days of dumping, no idea why, don't think I have over eaten. I have been prescribed Creon which does help during my normal visits to the loo.

I guess I am lucky as I don't now have stomach cramps or nausea but do get a mild ache when my stomach is either empty or just after eating, I find that a period of time standing after eating helps.

I'm now only having 3 meals a day with my own small plate as the sight of piles of food turns me off, just probably now about 1/3rd of what I used to eat.

As we are all so different I guess what one person's reactions to the op is different to an-others BUT with out doubt things do improve for everyone but slowly, slowly.

It's a long road but things do improve.

Jeff

[Animalmadwoman in reply to jeffw663]

Thank you for your encouraging reply Jeff. My husband was tested for absorption & told he didn’t need Creon at the time.

keep well & thanks! 🤗

[James-2015]

Hello Valerie...

Day after the op I was being helped into a chair... I was expecting a fortnight on my back but it’s a rollercoaster... day three I was being encouraged into my chair with little help.... something I believed was a bit boot camp but by day four I was doing it.. all part of the recovery... also on day three I was presented with a new toy... a blow pipe with a plastic ball in side... the harder you blow.... but you don’t have the puff.. to make it move... that blow pipe becomes your biggest challenge... but after 10 attempts you move it 2mm... then more... and a few days later and 200 blows further... you’ve got all the way to the top.. and now are recording your personal best for how long you can keep it there.... then you get to stand up and use a trolly to balance yourself.... yes it’s tiring but you soon be hearing a bit of spring in your husbands voice.. been there.. seen it and still doing it.

My heart goes out to you and your husband for you not being able to be together at this time. He without doubt in the best of hands, his pain will be managed and he faces a bit of a rollercoaster time for good reason But in the time being keep yourself safe and prepare for his homecoming and your very important part in his continuing recovery.

Best wishes... and stay safe

[Valerie01 in reply to James-2015]

Thank you he is feeling a bit more positive today

[kiddy]

Hi I’m sure he is being well looked after in critical care. I was only saying to my husband today I havn’t much recall of 5 days . They should have him on a morphine pump that he can press when he needs it. He will be very sleepy. Yes the physio will get him out in a chair and give him breathing exercises. I did everything I was told and gradually saw different tubes taken out. It is a scary time for you especially as you cannot visit. After 7 days I was encouraged to walk with a drip stand and build up each day.

Take care of yourself and hopefully he will be home for you to look after him very soon.

Best wishes

Debbie

[Valerie01 in reply to kiddy]

Thank you for your reply he seems to be a bit better today he has now got the morphine and has had some tubes out he had his scan with the die today and was really hoping he could have a drink of water but he hasn't had 1 yet I told him he might get 1 tomorrow he added the nurse to get him out of bed today and sit him in the chair so he must be on the mend

[kiddy]

Oh good. I remember having the sponge lollipops to wet my mouth. He will start on liquids soon as long as the scan showed no leaks. It is a major op and he will have ups and downs. Hope he remains on the up and gets onto a ward.

[Valerie01 in reply to kiddy]

Thank you

[liz_crisp]

As everyone’s says it’s normal to be wiped out. The physio getting you out of bed and into a chair is totally exhausting and when they suggest a 10yard stroll you can imagine the effort required. The breathing exerciser is exhausting too. I was in HDU for 5 days till the scan then on the ward for another 10. It is a series of ups and downs.

Take care of yourself and stay isolated, You could make up some baby-toddler sized portions of food like Bolognese, sheppards Pie, Creamy soups, or food you think he might like, and freeze them down, frozen peeled grapes and cheese cubes or cheese and pineapple were favourites of mine when I left hospital. Just mainly grazed all day on baby portions.

I did crave a Chinese meal but it proved a bit much for my newly arranged digestive system. (Enjoyed eating it, but the after effects were a lesson to be good and take it slowly 🥴 ).

Take care of yourself in these testing times and stay safe for his discharge from hospital. Hugs Lizzy

[Mark4]

Pain is usual he will have a self dispensing morphine pump to control the pain (PDA patient dispensed analgesia)

I’m sure he is in good hands and great for you all they did the op in these restricted times

Best wishes

[grandylynda]

Yes, recovery is slow and hard. It must be more so for both of you with no visiting and fear of Cv. Does he have internet access? My son downloaded a lot of light hearted stuff on to my tablet before my opp. I found that helpful in passing the time as it didn't need much effort. Just think baby steps and try hard to stay positive for his sake x x

[Valerie01 in reply to grandylynda]

Thank you for your reply he has just sleeping today he had a bad day yesterday his heart meds had not bn given him so he had no normal medication since Sunday so his heart rate was very high yesterday its still high today but not as bad he has cerebral palsy so hes having problems with his legs so they started that medication today so they say he has bn the mostly settled one today it's a week tomorrow so hopefully he should start to get a bit better thankfully thank you

[grandylynda]

Glad to hear that, wishing you all the best. I found that I was not having my normal meds at first but I think they have everything under control

[Guitarhero]

Hi there,reading all the replies is like de je vu, my husband had his op March 7th last year and was in intensive care for 12 days and came out after 17 days. The longest 17 days of my life...everything everyone is saying is normal. The tiny steps of getting out of bed,walking, the tubes coming out 1 by 1 every few days felt like a life time. I can only imagine how you must be feeling not being able to get there. Someone mentioned when you call. Get the name of the person you are speaking to.If he is still in intensive care ask to speak to the nurse caring for him when they can speak. These are the ones that see the tiny changes. Stay strong,stay positive. He has had the biggest of operations imaginable ,it takes a long long time .But the mile stones do come...x

[Valerie01 in reply to Guitarhero]

Thank you for your reply he has had a few bad days yesterday was the worst his heart wasn't good pete had heart attack 8 years ago has a stent now they have started him back on his heart meds and is a bit better today he has cerebral palsy and his legs are playing up so they have put him back on his spasms meds but hes a lot better today he has been very settled and I spoken with him tonight he is sounds a lot better so he will be ok it is a long heard road and not bn able to visit is killing me and him but trying to stay upbeat for him putting on a brave face when speaking to him reasoning him everything is going to be ok and he will soon be home its heard tho lol

[Guitarhero]

Oh my lord I do feel for you honestly. Only the ones that have gone through this truly know. I do hope you have someone supporting you whilst your support him?

[Valerie01 in reply to Guitarhero]

Yes I have family and friends but nobody can come and give me a cuddle only support is over phone lol x

[Fizzy35]

Oh how I feel for you !!

Most of us partners will agree this is SO DIFFICULT a time

The staff are brilliant

They are ALL specialised in their job and very kind

Realise he has had an operation similar to a transplant and be assured my husband realised I was there at times and chatting but 10 months in has forgotten most of his time in intensive care

Do you have close family or dear friends? Because this is the time you will discover WHO your real friends are believe me

One day at a time things will slowly change

Take care x

Fizzy35

[Valerie01 in reply to Fizzy35]

Thank you for your reply he is on the right track and not being able to visit is not helping we have plenty of people who have been message me to see how he is my family message every day but with all that's going on at the minute nobody can see each other he will be ok we just want him to get home and I can look after him but that's a while yet so we will just have to go with what the hospital says

[Hon-Moonraker]

Valarie,

I had my op in May 2018 so I'm nearly two years on now. Not sure where the time goes.

Obviously everyone's case will be different and the first few weeks are tiring, having to puree food is unpleasant, the protein drinks are disgusting (I recommend the chocolate one but only if you make ice lollies out of it), but in my case I was back at my office job by August 1st. There will still be instances of DS, but in my case they are really few and far between. If he remains positive and doesn't let it define him, I'm sure you'll both come out the other side.