My partner had surgery 9 weeks ago at Derby Royal Hospital who successfully removed the cancer. Great news and we're so thankful!! What we weren't really prepared for was how much this would still impact his life every day for a long time to come. We didn't really understand how much his portion sizes would affect him, how full he would feel after such a tiny amount of food. How very often he will need to chose between eating and drinking. It was probably all there in the information sheets and we just didn't take it in. He had pneumonia after surgery, came home then was readmitted a few weeks later with pneumonia caused by chronic aspiration, which he actually brought on himself. It's when saliva or bile or food contents go 'down the 'wrong hole' and pass down into the lungs which causes infection. We knew he had to sit upright at meal times and for drinking but didn't realise this also applied to sleeping at night. BIG learning curve.
He's still struggling with lots of gas after meals, hearing him burping so much after a snack or meal when he actually wears himself out is heartbreaking.
Just don't expect too much too soon. This is a really long healing process so take every day as it comes.
He's taking Gaviscon or Peptac after every meal and before bedtime which helps. But does all of this get any easier given time?
Any and all advice really welcome.
I'm sorry to hear your husband is going through a tough time since his surgery. My dad is 5 weeks post op and the eating is certainly a huge learning curve. My dad was fitted with a jej tube into his bowel during surgery so he's been having night feeds via this to help increase his calorie intake until he can eat enough orally. This is hard we're finding as my dad says he feels full quite quick. Eating and drinking need to be separate and getting dad to regularly eat is hard as he just doesn't fancy anything. He struggles to have an appetite. It's all very worrying and I know it's early days, but hoping he will settle into a pattern at some point. The night feeds are helpful at the moment (although he's not keen on having them). The aspiration sounds scary and you'll naturally worry. Do you have a specialist nurse to contact? Also does your husband have a jej tube fitted to help with his eating?
It's a massive learning journey (not a nice one) and it really is a day by day process. We've rang the hospital a few times since dad's surgery, and it's good to know we have that contact because you rightly worry about the slightest thing. I wish you both well on your continued journey. Take care x
Sorry to hear your partner is struggling since his surgery ..We quickly realised they don’t say it’s life changing surgery for nothing ! ..It’s exactly that !
My husband is eight months post surgery and it’s taken us all of the eight months to establish an eating regime which seems to suit him and his altered anatomy ! ..He hasn’t felt hungry since his surgery so it’s been a case of prompting him to eat little and often (with his drinks in between ) until it became second nature ..He also has two Foodlink Complete drinks ( recently prescribed by his dietitian) early morning and evening for extra calories …..It’s certainly been a trial and error process.
However he has gained the majority of the weight he lost and his Dumping episodes have reduced ..although we still find if he overexerts himself it can trigger one ! ..He takes Lansoprazole morning and evening to help reduce his stomach acid ..these seem to work well for him ..He sleeps with his top half elevated with multiple pillows and a V shaped pillow which he finds comfortable and so far he’s had no problems with regurgitation during the night ..
From our own experience I would say things do settle and become easier given time ..although each individual is different so the timescale and eating capabilities will be different too…
I would also suggest contacting your partner’s dietitian or specialist nurse to ask if they can advise in any way ..I’ve found my husband’s dietitian and specialist nurse to be very helpful throughout the whole experience so far .
Hoping your situation improves very soon
i think everyone would agree it is a big learning curve, 10 months post op and I am still learning. Before my op I was told it takes about a year to get used to the eating, I didn’t really understand why as I learnt not to over eat quite quickly but it’s all the other stuff. I also thought a lot of the things people mentioned as hard to eat related to swallowing issues but now know it’s more to do with avoiding dumping.
For me it wasn’t until after my post op chemo that things started to settle down. it made my acid reflux worse as well as eating harder. However once I finished that I was able to start seeing some real improvement.I had to have 3 stretches to help swallowing as well.I was warned about the wind and so far that has not changed I think it’s a known side affect…..
Your partners GP should be able to prescribe some acid reflux tablets, I think a lot of us are on them and these do help. I take mine in the evening as it’s worse at night.
The other thing I have found is that you do start to relax over time, if I am busy I can sometimes skip a snack but I try hard to make sure I keep drinking as I can find drinking enough harder.
It can be a rollercoaster with good and bad days but the good days do start to be more frequent than the bad.
I just wanted to echo the excellent advice you have already been given. It is very early days and it does get better. I had my surgery in 2020 and things are much better. Everyone is different but there is no rush, it will take along as it takes, I still have an alarm on my phone thar goes off every 2 hours to remind me to eat otherwise I get buried in my work and run out of energy. Portion size has reduced because his stomach is probably a third of what it was, i started with children size portions and I'm 6'2 and 18 stone. I had dumping everyday until I stopped eating very sweet things and realised I can't eat and drink at the same time, I either drink before the meal or wait atleast 30 mins to an hour after before drinking, this stops flushing the food out of the stomach and causing dumping. I get maybe 1 episode a month now and usually my fault. Sleeping with loads of pillows is a must, night time reflux can be painful. I take lanzopralole at night time. I also eat a peanut butter and banana sandwich in wholemeal bread before bed, that gives my body something to work on over night and cuts the acid as acid is worse on an empty stomach. Speak to your specialist nurse, as others have said, they are super helpful, I still call mine now if I have questions and they get things done. Good luck going forward, don't worry too much, you are both on the right road
Thanks Mel and Hulleng, this information is very useful. I had the operation in April and so the new life is new and strange for me. I’m 57 and back working again from today but only quarter time which is enough.
I find mornings are the worst time of day and I have to repeat ‘it’s only temporary and I’ll feel ok soon’ but the discomfort is pretty bad. Does anyone eat or do anything to ease the feelings of digestion and sickness?
Hello again, it can feel a bit of a rough road but honestly it will get better and easier. As I said I take lanzoprasol once a day but should take it twice, my choice. You should have meds like metachlopromide to help with any sickness. You may feel bad in a morning because you are running on empty by then, the sickness could come from that. I sometimes take a banana to bed and eat that in the early hours if I wake up, that really helps, as does the complex carbohydrate sarnie just before bed. If you can't manage that try a bowl of porridge at bedtime, it may help. I find the best thing is just to press on in the morning and eat, usually porridge again with a big spoon of golden syrup, that never causes me trouble. But just stick with it, it gets so much better. I'm 3 years and do have off days and low energy but you forget there is anything wrong and get on with life. Just focus on moving forward
my husband since his surgery has real difficulty most days aspirating when drinking. Can you explain your 3 stretches you do to help swallowing. I have him gargling before he drinks, doing a "pretend swallow" placing tongue between his teeth and swallowing before actually swallowing and then turning his head to the left is what his gastroenterologist recommended. He can usually have a couple sips ok but by the 3rd he's coughing terribly. Thanks
i mentioned 3 stretches but I was referring to the dilations they can do to stretch the scar tissue as I was having trouble swallowing after the op. I am lucky in never having problems with liquids only food. I am assuming the issue you are describing is a different one and sounds awful. If it is swallowing in general then a dilation may be worth requesting I was told it was normal to have several after the op.
I hope it gets better soon