Dad's post op eating issues

Hi ..Sorry to hear your Dad's having difficulty with his eating …My husband didn’t attempt bread or pastry for at least four months  post surgery on the advice of his dietitian .Now the only bread he eats is Milk roll or Danish .He finds this type of bread much lighter to chew and swallow ..As for pastry he now avoids it altogether as he found it ‘clumped together  ‘ (his words ) when he swallowed it and made him feel uncomfortable in his chest .(if that makes any sense?) So now if I make a pie I top it with mashed potato  instead of pastry …We’ve found it all trial and error and to be honest at the beginning we found the eating process a real bugger to get to grips with ! ..I still can’t believe it’s taken nine months to get my husband to the point he’s at now ….His  surgeon and dietitian said it would take time and patience ..,and they weren’t wrong  !! 

Just to add some of the foods my husband found difficult to eat two months post surgery he can now eat nine months post surgery ..It was just a case of reintroducing them later on in the healing process to see if he could manage them ..Some he could and some are still off the menu ..but he can now eat a good variety of foods (albeit in small portions ) .

Of course everyone is different and this is just our experience…Maybe a chat with your Dad’s dietitian would help?  ..I relied a lot on my husband’s in the first six months and found her advice very helpful .

regards J 

Thanks for sharing. Yes my dad found similar with the pastry, how it clumped together and was very thick and stodgy. When he ate an apple crumble he thought he was going to be sick saying how it almost just stuck in his chest. It must be awful to feel like that. I know there's still a long toad ahead getting to grips with an eating routine. Dad still finds snacking hard, even though his dietician told him to increase this if possible. Easier said than done!

He's still on his night feeds alternate nights, and I imagine will be for a while yet. I can see it all getting dad down, I think he feels that he can carry on eating like he did before all this started, but its not the case anymore sadly. He's realising that he's going to have to change some of his eating habits. I'm taking dad to a support group meeting next week so he can meet people who have gone/are going through this type of cancer. Hoping it might help him knowing there's others who can relate to his experience. X

I’m sure the support group will prove beneficial ..Unfortunately my husband declined the opportunity when it was offered .It’s just not his thing….I don’t think we realise until afterwards what a truly life changing experience this all is in a lot of ways 

You’re doing a great job in supporting your Dad .I know .It isn’t easy ..I found it physically and mentally draining at times just thinking about food !! ..It seemed to be the centre of our world at one point !.. but it did become easier as time passed and things did seem to settle eventually..

regards J 

Hi CMJ78

It can be difficult to eat, and yes you have to change everything you did before regarding eating, smaller portions, finding out what works and doesn't, avoiding dumping, it's a real mine field. I knew I needed to eat so even if I didn't feel like it I just pushed it down. Regular snacks, avoiding drinking with or straight after food, its different for everyone. I never had night feeds, as soon as a leak healed the feed tube came out. I was nil by mouth for weeks and had no sense of taste for ages but I just ate. He may also not feel hungry, they cut the vegus nerve with me so ive never felt hungry again, i set a 2 hourly timer on my phone to remind me to eat. He may find it's harder now than with the tumor but it will get better, speak to.your specialist nurse about dilation, i had it done twice and 2 years on I can eat just about anything, fish and chips, Chinese, curry, pizza, steak, whatever I want just a lot smaller portion. Look at food as medication for now, he must take it every 2 hours, that's what worked for me. It's not easy but it will get better for you both, he just needs to put the work in to get there

Hi ..Interesting to read your post especially the not feeling hungry part ..My husband has never felt hungry since his surgery..We were hoping the feeling would come back but after nine months it still hasn’t returned .So now I’m wondering if his vegus nerve was cut too ? ..No one has ever explained it to us . He also has the strange feeling in his chest of the food dropping bit by bit after he’s eaten …so we’re assuming because most of his Oesophagus is now gone , the reconstruction made from his stomach must use gravity to push the food through his altered digestive system ..Maybe this explains the advice on sitting with a rigid upright posture when eating ?   ..I honestly think it’s amazing how you can lose a vital part of the digestive system but still eat ..albeit of course with smaller portions than usual …He fortunately hasn’t needed any dilation up to now and we were told his surgeon had also performed a pyloroplasty procedure during his esophagectomy which would help with the flow of his food and fluid intake through the reconstruction …It’s marvellous surgical stuff when you think about it .

regards J 

My husband had his op 6 weeks ago and was quite poorly afterwards, he is now home and the eating issue is so so stressful. He just doesn’t want to eat and complains about everything I give him. He does not have a feeding tube as also had a tumour removed from bowel at same time, this has its own problems. He has lost 16kg and was slim to begin with so like and feels awful. I am at my wits end and wish he had a feeding tube as then know he would be getting some nutrients. He has drinks of his dietician and I tried him on the building powder but doesn’t like them. Please tell me that he will start eating soon and has anybody else had this problem. Thanks Jacky

Hi Jacky

I honestly wish I could tell you that but I can’t …Six weeks is early days though ….I would keep  in regular contact with his specialist nurse and dietician ..they will be able to advise you   ..It isn’t easy I know and it’s taken my husband nine months to get to the point where he is ..He was nil by mouth for several months before his op and he had the JEJ tube in for seven months post op  (10 months in total) so that did help in the early weeks ...He now has supplementary  drinks which he doesn’t like either but he drinks them as he knows they help ..Just to add my husband suffered from depression after his op ..Our GP said it’s pretty common after major surgery….Could  your husband be suffering too? or is it just the eating issues ?   The symptoms were anger ..poor sleep …poor concentration and confusion .He seemed overwhelmed by the whole experience...He was given meds which have helped ..He’s still on them but we’re hoping after his meds review next week the dosage will be reduced as he seems to be coping better now ....It’s such a massive thing to go through isn’t it ! .

regards J 

Thanks for sharing HullEng. I've told my dad to try and treat food like medicine. He knows this but it's still hard. We were at the hospital today and dilation was mentioned. He's told dad to keep an eye on the swallowing and if there's any more issues he needs to call them and they can arrange for him to have this procedure. He told us it takes around 15mins and involves an endoscopy. He explained that as the scar tissue heals it can tighten ( this sounds worrying in itself!) restricting food going down. Who knew all this could come about? Dad never had swallowing issues at all before his surgery, so it's awful that it's starting to happen now. I do think dad will likely need this dilation to help open things up, and to stop potential choking episodes. 

It's funny how different regions do different things, I had the possible scaring and dilation explained to me before surgery. The important thing is to get the food in, stick to soups, Mash n gravy, soft things, just to get the calories in, that's the most important thing. I was losing weight for a while but now I'm putting it on. I last 50kg over the treatment but I was big to start. Build up to things like bread and pastry, I used to have Danish loaf bread too, now I'm on granary and wholemeal. You have to remember his stomach is smaller now and laying vertical, higher in the chest, food 'drops through' quicker and can lead to dumping so try not to drink with food or for atleast 30 mins after or he can feel ill.  just keep moving forward and you will get there.on day at a time but there will be a day when all this is just history. I often think its harder for the people around us, they need to take time to de-stress too, look after yourself then you can support him, but he does need to put the work in too

I have had 3 dilations because food was getting stuck and the only way I could dislodge it was to be sick (often several times until it came out).  I can now eat most things so I would say although, like any procedure, it does have risk, in my experience it really helped.