Hello everyone. I am having an esphagectomy - removing 2/3rds of my esopheagus in 13 days. What are things that helped after surgery?

[thisjourney]

After surgery

[ccfc]

Hi. this journey is probably a very apt name because that is what you are about to go on. My only advice is to expect a long road ahead. Don’t be impatient about the speed of your recovery and take things one day at a time. Also expect setbacks. Take note of how different foods affect you but also try them again further down the road because things change over time. Everyone is different in their recovery so it’s difficult to advise specifically. Sorry if it all sounds a bit negative but I don’t want to dress it up. Things get better over time. I’m coming up ten years since my op and life is good. Good luck and best wishes, James.

[Cavalier3]

Hi this journey.. ccfc is absolutely right it is a journey. I’m 16 months post surgery I had most of my oesophagus and a third of my stomach removed. What I’ve come to learn from the amazing group is we are all different. What is the same for us is to be kind to yourself and take one day at a time. Go slowly with food and take your dieticians advice. Little and often and over time you find out what you can’t tolerate any more. Good luck and we’re here for you

[Makulit]

Hi there. I had the Ivor Lewis surgery 8 years ago and am fitter than I've ever been. There's very little that you can't do, if you manage it sensibly. I still SCUBA dive and do all sorts of exercise.For recovery you can contact your local gym, with a letter from your doctor. They'll allocate you a qualified trainer for people recovering from surgery, and it's subsidised by the NHS.

Stay positive, keep active and manage your health and sleeping by being strict with your diet. All the best.😁

[Brett77]

Hi there. We all know this isn’t going to be fun but you’ll get through it. My advice beforehand - and I know you only have 2 weeks - is to go in as fit as you can be and if you’re not overweight now, try gain as much weight as you can.

Post surgery, take it easy and don’t rush back to anything. Listen to your body. Try and start gentle walking as soon as you can. Get a Dietition who knows about this surgery to guide you once you get home and as you continue to recover.

Consider engaging an exercise physiologist after a few months.

Speak to your medical team about any suggestions to reduce risk of recurrence egg immunotherapy.

My best wishes.

[champagnelover]

Hi There is some good advice here, and it is true that post surgery is a journey. I am 13 years post surgery and all I can say is at first take it one day at a time, eat little and often (even if you don't feel like it) and listen to your body. You will get fitter as time goes on but don't rush it. I would also recommend you find out about 'dumping'. I wasn't told about this before surgery and found out the hard way. There is advice on here, - you may not get it but it is better to be prepared for the after effects of eating. If you do experience dumping have a hot water bottle ready - it helps to relax the muscles. Good luck and stay positive - we are proof that you can have a good life afterwards.

[Bien-aimee in reply to champagnelover]

After surgery you may find your salivary glands do not produce enough saliva, so drink enough water. Try to eat little and often. It is extremely important to get the ratio of protein to other food sources right. Do not accept dumping syndrome. Manage by using the glycaemic index as rule of thumb to avoid debilitating vomiting. Dairy products may be a problem, but this will show quickly and you can avoid them. Some Good vegetables and fruit can cause me problems - apples and broccoli and root veg, like parsnip, sweet potato Just try small portions of any thing not sweet and see how you manage. Toast and crackers are ab better option than soft breads which can be claggy in throat - main thing is small amounts, chew well and often. A few boiled or mashed potatoes, + very well Cooked beef, Turkey. Chicken. Lamb , quality 100% minced beef, - all soft and falling to bits on fork, gravy ,carrots and a green which suits you. Use a smaller plate than before, because you will have much smaller portions - or make 2 smaller plates worth, put in fridge then reheat in microwave next day .Save energy where you can. If you like fruit juice dilute with fizzy water or plain water Fruit juices can cause dumping symptoms. Fizzy water helps get some food down if you feel it's a bit stuck - too much at once, wrong texture like claggy cornflakes or a tablet?Supplements to help- good multi mineral, good multi vitamin, a quality essential fatty oil capsule, vitamin D3 , vitamin C- take this with the iron you should be prescribed at the same time . All surgery to do with the stomach alters iron absorption(and mine was pulled up to form a new oesophagus) Avoid caffeine drinks for ½ an hour after the iron tablet and vit C- caffeine inhibits iron absorption, whilst vitamin C enables absorption. Finding the correct iron for you may be tricky, but ferrous fumarate is the best tablet form for yield. There are liquid forms out there. Dr.Myhill's multi - mineral supplement is good, containing iron as well as a daily recommended amount of all the others we need . Have regular checks on iron levels done- you can take too much. Also see if you need B12 and calcium.

Exercise gently and listen to your body. Find out about the effects of the vagus nerve. Also if you are given lansoprazole or other gastro- resistant medicine, this too affects iron absorption. If you take steroids for any other health problem you must tell the doctor or pharmacist if you take an-azole drug because this can cause adrenal collapse in extremme cases and is life- threatening. I know, because it happened to me.

Take it a day at a time, enjoy and be thankful for the beauty of creation, the kindness of others, what you can do, eat ,drink say, sing. I had my op in 2009 . I was bombarded by other life challenges and later health difficulties unrelated to op. but I am still here by God's grace and the prayers of many wonderful people.

[docLocke]

You didn’t say why the surgery—we’re assuming esoph or junction cancer, gastric pull-up surgery preceded by chemo and radiation, maybe FLOT4 protocol because US. Maybe most important item common to replies is: prepare to become your own best advocate. Research qualifications so you can choose dietician, physical therapist, other specialists who can truly help you get what you need. As opposed to, eg, dietician who has only generic healthy eating advice. You’ll lose a lot of muscle weight a week or so post-op NPO; regular exercise crucial to recover what you can (body and spirit!). Also suggest find good non-surgical GI specialist to have available for the unexpected stuff (which will happen—like extended diarrhea). Your surgeon knows how to cut, stitch; good to have someone who knows how to heal.

[thisjourney in reply to docLocke]

I have Adenocarcinoma of the esophagus at my hiatal hernia. I have had scans to rule out that it has not spread to my lymph system so no chemo or radiation at this point.. Thank you so much for your response - any info is so helpful!

[grandylynda]

I would agree with all this advice but would add that,at times, I took life almost hour by hour or certainly half a day at a time. Hopefully thee hospital has already put you in touch with a dietitian. If not, find one who knows about issues from this op. I have had prob.ems with absorption of iron and calcium. 5 years on I am having 3 monthly blood checks to monitor ferritin levels ( different from iron levels in some way but important) I really had to persist withthis with GPS but eventually it got put in my notes for the checks. I arrange the tests and get the result through patient access. Tablets now on repeat so I can manage it. Have also started on creon this year which have certainly made a good difference to bowels( less diahoria or however you spell it) Having blood test tomorrow to see whether my ferritin levels have stayed up without tablets for the last 3 months. You won't necessarily remember all the details in these posts, just remember it will be a long, sometimes hard, journey. Be kind to yourself.f, take baby steps and don't be afraid to bother the NHS. Hopefully you will have a specialist upper gi nurse you can contact.

Hope things go smoothly

[Spikey]

Two things which have not been mentioned so far, but which helped me with my recovery (I am now 15 years post surgery) are (1) meditation, which helped me relax and stay calm, and (2) physiotherapy, which helped to rebalance my muscles after 10 days in hospital and a month's recuperation. Good luck with the operation.

[purplekey]

Brilliant advice so far. I would add keep a food diary and a bowel chart so you can record bad reactions to foodstuff. Plus it will be easier to answer the dietician questions, it’s very easy to loose track of where you are up to eating/ drinking so a record helps. I am 18 months post op and I still often eat separately from my husband as our meal times are often out of sync. I treat myself to M&S meals and snacks as I’m still not up to cooking. Hope the operation went well. Best wishes. X