Early post op

[Tenerife70]

Hi my husband had his Oesophagectomy surgery on 8th January this year and discharged from hospital on Friday so early days his experiencing rather a lot of pain on his left side underneath the ribs , can someone give us some advice , is this normal, I understand it’s early days but just want some post op advice please

[Julieanne60]

Hi Georgenich. I hope your husband is pleased to be home and is recuperating well, albeit slowly. It does take time and I hope he can enjoy guilt free naps and daytime snoozes. With regards to your question about pain under the ribs, all I can say from my own experience is that this part of the surgery took me a long while to feel relatively pain free. I remember mentioning it to the Consultant on my first follow-up appointment, and she didn’t seem worried, just something that would eventually heal/feel better. I didn’t find that the pain relief really helped much either. The worst thing for me was that I couldn’t bear to wear a bra as it put pressure on this area. So I guess that it’s the same for your husband (without the bra). From memory, I think it took a good four/five months before it didn’t bother me anymore. However, I still feel a bit numb in that area, nearly 15 months on from the operation, but it doesn’t bother me.

If your husband is worried though, I would phone the Consultant/Upper GI Nurses. It never does any harm.

Good luck with his recovery. Best wishes, Julie

[Tenerife70 in reply to Julieanne60]

Thank you Julie I feel bad as I can’t help and we’re just not sure if it’s normal

[Summerson in reply to Julieanne60]

Hi yes it's normal to have pain round that area. I find it's still quite numb round there and It six years since my op.

[LarryLamb69]

Hi , A lot depends on how the surgical team went in ,if like many they went in from theback (he wil have his "shark bite " scar below shoulder they do actually move the ribs ,and can often fracture of even break the odd one , for myslef (March 24) it was my nerves around rib,s so numb , and then discomfort when healing later on , If he can cough that is a good sign at the very least , but as others have said it is a long process to recover...many months to years (for some)if in real pain speak to your clinical nurse lead and they will advise.

[Tenerife70]

Hi could anyone share how they managed their change in diet and where they are with eating

Thank you

[Julieanne60 in reply to Tenerife70]

Hi again. I had a feeding tube inserted during the operation and kept it in for around 3 weeks (after being discharged from the hospital) to ensure I was getting enough calories. It also meant I could experiment with food. I used to have soup, biscuits dunked in tea, custard, jellies, soft puddings, scrambled eggs, jacket potato with cheese and butter (not the skin), whizzed up tinned fruit, yogurts, basically anything I could squash down with my tongue before swallowing. Obviously everything was in smaller amounts and I was careful not to have too much sweet stuff to try and avoid dumping.

The Oesophageal Patients Association has information/booklets to help with this.

I am virtually 15 months on from my operation and I eat the same foods now as I used to before the operation. I eat smaller amounts because I get full up quite quickly and I do avoid over indulging in sweet things; I do eat them but I stop sooner than I once would have done. I try and eat more regularly rather than just three meals a day.

I hope your husband is doing well. With best wishes, Julie

[Tenerife70 in reply to Julieanne60]

Thank you so much for sharing as it’s early days for us there is so much to navigate , he is ok slightly less pain today which is good , he had a review next week which worries him as he thinks his live is just hospital appointments his also wondering if he will have more chemo as that was the plan Thank you again any helpful tips are appreciated

[Julieanne60 in reply to Tenerife70]

It’s all early days for him and he’s got a lot to come to terms with. It’s good he has hospital appointments booked for next week. I never minded going to the hospital as I always found them incredible supportive and knowledgeable. Any time you feel like messaging please do so, as we’re all here to help you if we can. Take care x

[Tenerife70 in reply to Julieanne60]

Thank you x

[Tenerife70 in reply to Julieanne60]

Hi just wondering if you saw my last question re bile/phelgm

[Julieanne60 in reply to Tenerife70]

Hi. I’m so sorry. I didn’t see your post regarding bile/phelgm. I came away to Austria last Saturday, so maybe just missed your post. I didn’t suffer with bile or phelgm, but I think some people who had the cancer lower down might have. I definitely remember reading it on other peoples’ posts.

How are you both getting on? Julie

[Tenerife70 in reply to Julieanne60]

Thank you , I have read some other posts and yes some others have mentioned this issue it’s rather difficult getting an answer on this even from the professionals, Ignacio is ok we saw the team last week and they are extremely pleased with how the surgery went and the first chemo definitely done it’s job he has second course in 2 weeks just incase any rogue cells hiding, I get tired trying to tell him it’s still early days and all after effects to be expected but he is very impatient and wants to get back to normal asap

But thank you again and how are you ?

[Julieanne60 in reply to Tenerife70]

Hi - well I suppose that if Ignatio is impatient then he must feel well, which is a good sign. Just be careful not to overdo it, particularly the eating phase; little and often with softish foods. I’m okay. Although we’re on holiday and enjoying the brilliant sunshine in Austria, I think the higher altitude has triggered a sinus episode for me, so not so great. Hopefully it’ll calm down. Bye for now, Julie

[LarryLamb69 in reply to Tenerife70]

I would go with all Julieamme has said , I tried to eat "normal" food post discharge ,just the softer options . patsa with sauce , shepards pie , curry with a good sauce , as well as all the others mentioned. The items that I kept away from for a period and would think most others do , are you red meats & firbrous veggei,s ,so food types that take any person "some" degree of effort to eat. White shop bread is not great either as this clumps ups when eating , you only realise how much it does with a condition such as this😐..But after maybe 1 month or so I started to broaden my diet and slowely encompassed most things into it - 2nd round of FLOT chemo delayed progress for a while as it does with everbody, post Chemo and 2 months on nil limitations , except shop white bread , wholemeal of even half and half works for me. Feeling full is a bit new as well , for myself I just get to the point where that last mouthfull is not going anywhere, at home not an issue , when out not so great , just have to work through it and try to be aware before I get there. For going out I have not restricted myself ,you can be in 2 minds , why bother ?? as he will not be able to eat much , waste of money and so forth ..or take the approach to live a normal as possible "food" life, So when out a starter maybe 2 and that might be his limit ??? ,but I take the view I would have spent the money going out as "normal" the fact I dont eat much does not come into play , or you are just restricting you normal life with no need , and life is for living and getting through this whole process means it should be lived in my humble view , I have never had an issue with a restraunt when asking for a starter and then again one for my main , buffet type places are ideal as well.!

All the very best!

[Tenerife70 in reply to LarryLamb69]

Thank you all comments help so much

[kiddy]

Hi there, I had this for a long time. As others have said it is pain where ribs and nerves have been damaged during surgery if he had the full Ivor Lewis surgery.

Remember to do deep breath exercises he should have been given by physio. Try walking around and building on that if he is able. It is very early days. Most of us would have still been in hospital.

Eating like a baby weening onto food. Sometimes we get uncomfortable if we have eaten too much.

Remember it is a very big op ,small steps not a marathon.

Great advice on here whatever stage we are on our journey.

I am 8 years post surgery having chemo before and after.

Remember to contact the team be it your main nurse if you need stronger pain killers etc.

Take care of yourself too.

Best Wishes

Debbie

[Tenerife70 in reply to kiddy]

Thank you all the replies are extremely helpful x Good to hear so many of you doing well years on

[LondonMan]

I had my Ivor Lewis surgery almost 3 years ago and I periodically suffer from pains below my right rib cage. This has happened since the surgery and occurs probably every 3 days. The pain varies in strength, sometimes it has me bent double, but it doesn't last long. I have mentioned it at my appointments but no-one seems worried about it.

Eating and weight retention is a major problem for me - I just cannot stop losing weight. I've had an NJ feeding tube fitted on 4 occasions, the last time was for 3 months. I feel so much stronger when with the tube but afterwards the weight just slowly falls off. I hate the prescription food supplements (Aymes etc) which make me sick. Presumably your husband has been advised to eat 5 times a day, not too large meals. I lost the sensation of being hungry with the surgery so one should treat eating rather like taking medicine and eat regardless. I find that having to think about eating so frequently is a real pain! I eat most of the foods that I used to eat, albeit smaller servings. I struggle with roast dinners dinners for some reason. Shepherds pie was one of my favourites in the early days.

Dining out is not the same. If one can't manage adult size portions asking for half portions rarely receives a positive response - except pasta dishes in Italian restaurants. Children's menus are rarely very exciting!

"Tenerife70"??? - we're off to Tenerife on Monday for 2 weeks! (travel insurance is another topic!)

All the best to you both.

[Tenerife70 in reply to LondonMan]

Hi thank you for your comments , my husband is from Tenerife met him 35 years ago holiday romance. This has knocked us both can’t believe it’s happening really he was diagnosed last August so lucky everything has moved quickly such a lot to navigate but main thought is getting rid of the cancer

Enjoy Tenerife

[toneman]

6 years post op I still feel pain.and numbness on my right side under the ribs. Stanford in calif usa did my surgery. Do not know in your husband's case what side of the back they went through but I believe it's from the where they went through the diaphram. It may never stop being felt as the nerves may not grow back together.

[Tenerife70 in reply to toneman]

Hi

Yes the pain is the right side which makes sense from everyone’s comments, the reason I asked is because when he was discharged from hospital he asked for some stronger pain relief but the nurses gave the impression that paracetamol and hydro codeine would be enough but they did prescribe a bottle of liquid morphine but my husband is reluctant to take it as was only given on his request

Thank you for your comment

[toneman]

Always best to try and use the least amount of pain killers as they are super addictive. I was in intensive care after my esophigectamy for 10 days and they had me on morphine, fentinel and hydrocodone. It's taken me several years to be able to sleep like I used to and I definitely think it was from the drugs they used to keep me under for the eleven hour surgery, plus the recovery in intensive care. My opinion of course, not the oncologist. But the least amount of painkillers he can take is best.

[Tenerife70]

Hi another question please, Ignacio is experiencing after eating, normally in the evening lots of bile/phlegm ( sorry to be descriptive) his not vomiting any food just this has anyone else experienced this and any tips

Thank you

[Tenerife70]

Hello again

Just wondering if anyone else experienced mainly after evening food the need to get rid of phlegm/bile , not happening during the day ???

[JE1983 in reply to Tenerife70]

Hi, my husband had his op 19th Dec 24. He was in hosp for 40 days with a leak and is just home this week. He would eat his last food around 8pm then he sits up watching tv for at least 2-3 hours before going to bed and once in bed he takes a dispersible lansoprazole 30mg and he doesn’t seem to have any phlegm trouble but he did in hospital in earlier days. He just ended up spitting it out in a kidney dish while he was in. It could be really thick and white but he was only allowed sips of water at that time. It could be a common thing with healing post op but you could check with your CNS and have a look at his evening routine x

[Tenerife70 in reply to JE1983]

Thank you , love the fox photo x