Husband ready to leave hospital this ... - Oesophageal Patie...

Oesophageal Patients Association
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Husband ready to leave hospital this Saturday - after 10 days post Ivor Lewis op

Notknowmuch
Notknowmuch

My husband’s IL surgery went well (on 2/6) and according to surgeon The surgery went very well (5 1/2 hours).

However, he was in excruciating pain (2 hours) immediately after surgery in recover because epidural didn’t work. Subsequently was put on Ketamine and morphine.

He was in ICU for 1 day and could sit up on a chair by end of the day. So they moved him out of ICU into a ward. He was able to walk slowly around the ward in Day 2 after surgery.

He started oral liquids on Day 3 for 3 meals, then was put on puree food (including with IV feed).

Doctor said he was recovering better than expected and was pleased with his progress.

However, last 2 nights after ketamine was removed, he was feeling pain and couldn’t lie comfortably so didn’t get much sleep. Doctor ordered a blood test to check if he has bladder infection. Will know tomorrow.

He had sore scraped skin on his back from rubbing against the sheet trying to make himself comfortable.

He was frustrated with the getting in and out of bed to pee (had a few near misses too) with tubes of all sorts still attached and was in pain with every movement. The morphine will be removed tomorrow replaced with painkiller tablets.

IV feed may be stopped tomorrow and plan is that he can eat on his own (puree food) when he goes home this Saturday.

Hope my husband can sleep better tonight.

15 Replies
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Hi there

Sorry to hear the problems your husband is going through - I hope you get some answers - Don’t be afraid to ask questions or have a chat with your specialist nurse - usually a feed tube is left in for awhile and you go home with a feed machine to feed overnight And then you can gradually introduce food - all the best

Hi there,

Wow he has done well some people get out at 10days. I was 3.5 weeks. Yes he has to be off of intravenous meds and on liquid/tablet form. It takes along time for pain to go slow steps. Keeping mobile and doing what he is told is key to recovery.

He wont be able to eat big amounts it is like weaning. You will be on a bit of a rollercoaster.

The whole body has to learn to work again. It is a big op.

Getting comfortable is a problem the op site/sites are painful especially the shark bite back one.

Hope he is home soon.

Best wishes

Debbie

Yes, he is taking tablets for pain. The pain seemed ti build up after meals. Maybe he’s eating too quickly (soups and puree foods). He said he will try to consciously eat slower tomorrow snd see if pain again happens after a meal.

He is eating orally 3days ago and when discharged from hospital but I will have to learn to flush the feeding tube twice a day just in case he needs to be fed by tube if anything happens and he isn’t eating sufficiently.

Dietitian advised to drink 3x a day Nutricia Fortisip Compact Protein drink.

Blood test showed pain is not due to any bladder infection so that was a relief!

My husband’s surgery to recovery at hospital have been very smooth so we are feeling very blessed.

Its good to keep a food diary too as some foods just do not agree with you after surgery and cause pain and discomfort so its helpful to pinpoint what . I would recommend the wedge pillow too for comfort in bed . Although if he had keyhole in the tummy and the sharks bite at the back its less useful but if he was cut under the tummy it does help . My husband did not have a feeding tube as he had surgery in France and they have a different post operative procedure protocol . I think really try not to use it and the little and often rich in nutrition food orally is the best route ( and impact drinks too although my husband hated the taste of them )Be careful of him drinking too much because this can fill you up on liquids and then you have no room for real food . Bon courage , its a long and slow total recovery and he just needs to listen to his body and rest and exercise and eat when he feels he can .

Oh that's great news for you hope all continues to go well x

So glad to know that your husband is making a good recovery.

Mine recovered well too, after keyhole surgery. He was home after 6 days, no tubes. This was in 2012 so maybe things were different then. Here are a few thoughts from our experience, but everyone is different.

When Pete gets home, he will be feeling anxious and exhausted. It's a bit like feeding a baby, about six tiny meals a day and you have to expect food to be rejected. I've still got the little plastic containers I bought to store the pureed food I made, useful now for left-overs.

I expect your practice nurse will show you how to dress his wounds and be generally encouraging. (Obviously get in touch with him/her if you're worried.)

When he feels he can, tiny walks are good to improve confidence. I do hope the weather will be good so that he can sit outdoors for a bit, maybe allowing a friend or neighbour to visit at a distance, also good for the morale.

As you know, all post-IL patients have to sleep at an angle. We bought an electric bed after a few weeks, as my R hates risking reflux. Definitely worth it for us but as I say, everyone is different.

And make sure you get some rest yourself!

Indeed I’m feeling very tired from all days of travelling to hospital. Very happy that my husband is returning home tomorrow.

It is 12:02am in Melbourne and have just finished some final cleaning of the house.

A little anxious with how I’ll be able to do s good job of cleaning the site of his feeding tube and flush the tube (2x daily for 6 weeks) to ensure tube doesn’t get blocked even though he is eating orally and not from the feeding tube.

Dietitian will be checking on us and I am to call the doctor if tube gets blocked, infection or noticing the disc moved away from the skin!

I also have to give him a blood thinning injection daily.

I just pray that my husband will recover well without any major incident.....he has come along way and dine very well putting up with the constant pain, bloating, etc.

Taking each day at a time.

I would agree with all previous comments. Also, I had a day and night of dreadful pain when my epidural was removed after the maximum time it can be used. 8 days? I think home on day 10 was on the recovery plan I was given but I got the impression that being in longer is not uncommon and 10 days is good. I was in 17 days.

Recovery is slow. Bay steps. It is worth keeping a food diary as your body and even taste buds may have changed what they like. I hate wasting food but have come to accept that it happens. Even now, nearly 3 years on I can suddenly go off things or just be unable to finish. Hope all goes well

Thanks grandylynda, took your advise with food diary. My husband is very determined to eat sufficient calories each day. At times, he finds it hard to finish his main meals especially dinner.

My husband is eating 1800 cal a day with 3 x Nutricia Fortisip 125gm (300 cal) high protein and energy, recommended by dietician.

He eats 6 meals a day from 7am -7.30pm (latest). For pain management, he takes Panadol every 4 hours, Targin 2 x a day and 1 oxycodone in the afternoon to rest.

Tries to walk around the house and does breathing exercise. Too cold and weak to walk outdoors yet and it is now winter in Melbourne.

Very lucky to have not experienced ‘dumping’ and he makes sure that he remains seated for a while after meals and no water 30 mins before and after meals.

He is 16 days post IL surgery.

Sounds like he is doing well. Hope it continues. Dont be too upset if there are hiccups in progress x

Today I forgot about the ‘mince and mash diet‘ which my husband is to follow for 1 month after IL surgery.

Today’s lunch, I gave him 250 gm creamy chicken (not minced but cut into small pieces instead) pasta and he had to go to the loo after finishing this meal. Is this to be considered dumping?

Looks like I have to stick to minced meat as advised by dietician.

Dumping is more surreal down the line from recovery as you wean off the medicines and liquid food. When patient is on route to the new normal. Generally liquid diet doesn't cause dumping, unless its strong irritant.

Dumping Syndrome is a collective symptoms list, not every patient experiences exact same a d all of the symptoms. Everybody is unique to react to the foods and drinks with their own bodies being unique.

Suggest reading comprehensive DS information on the OPA website. Www.Opa.org.uk

He is doing good from his side, so are you and you both are actively advised by the dietitian, so overall can't be better than this. Continue what you doing. There will be times and days not so nice to you, just be prepared to take it on as a day to day basis battle.

Noted your comments, very helpful. Don’t really know what dumping is so I assume that when my husband has to go to the loo after a meal it us due to ‘dumping’. Previous to OC he is very regular ie once a day bowel movements.

Website link

opa.org.uk/downloads.html

Download

"Dietary advice for patients experiencing dumping syndrome after oesophago-gastric surgery"

Excerpt from the leaflet in the link above

"Dumping syndrome is a group of symptoms which can occur after surgery to the gullet (oesophagus) or stomach. Dumping syndrome can occur following a total gastrectomy or gastric by-pass (roux-en-y), after a partial gastrectomy or oesophagectomy.

Dumping syndrome is often divided in to ‘early’ or ‘late’ depending on when you experience your symptoms. Early dumping occurs within 30 minutes of eating and symptoms last up to 60 minutes. Late dumping occurs 1-3 hours after eating and symptoms are related to low blood sugar (hypoglycaemia).

Early dumping symptoms Stomach cramps/pain Diarrhoea Sweating Palpitations Bloating Noisy stomach sounds (borborygmi) Flushing

Late dumping symptoms Sweating Shakiness Loss of concentration/confusion Hunger Feeling faint Tiredness Desire to lie down Nausea/vomiting Face colour is paler than usual

Dumping syndrome is thought to be caused by the movement of food from the gullet (oesophagus and stomach) into the gut (intestine) being faster than normal. When food enters the stomach it mixes with stomach juices and digestion starts. Normally, the valve at the lower end of the stomach acts as a break so the food is only allowed through bit by bit. If this valve is removed or does not function after surgery, the mixture gushes through more quickly causing the symptoms listed above. "

We all experience dumping syndrome to various intensity and variety of combinations.

Going to toilet post meals is diarrhoea DS, could be cause by food irritant, simply gut being intolerant to whats being eaten (this could be perfectly normal pre surgery), excess quantity being pushed into stomach, excessive physical movement immediately after meals tgis includes talking excessively, walking lifting, basically any act which could strain the stomach to push open the sphincter in duodenum. Or simply too much sugar.

Don't worry too much, good practice to keep diary of whats been eaten, drank and what symptoms its caused what time after meals and lasted how long. Learning on the job this one.

Hi my husband also has come home but he had been in for 12 weeks hope he's.ok x

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