Struggling after total Gastrectomy

Hi, it's still early days since the surgery. I also had problems after the 9 hours of surgery, when they were bringing me around they had difficulty controlling my heart rate, it was soaring. They discovered that the epidural wasn't giving me pain relief and that was causing my heart to race. I was in ICU for 4 days but was so drugged up it was a blur, then spent another 8 days in a general surgery ward. I was given codeine and paracetamol to manage the pain at home. I was told that I would have to sleep propped up and on my back to allow the scaring and ribs on my right side to heal. I was told never to lie on my left side as the stomach acid would flow up into my lungs. The painkillers worked ok, I took 2 codeine and 2 hours later 2 paracetamol up to 4 times a day. I was also on the jejunostomy feeding tube in hospital, I had to slow down the rate of intake as that made me feel sick. It meant that the food pump was on longer but it stopped me feeling sick. I'm not sure what instructions you were given about eating, small and often is the usual instructions. I found it best to avoid sugary foods and drinks and to stick to eating soft foods for a couple of months. I had porridge oats made with milk instead of water or cereal with warm milk to soften it and Stevia sweetener instead of sugar. I had coffee made with warm full fat milk in-between meals and sometimes a small biscuit. Soups for a lunch and dinner was quite often something made with minced beef like chilli con carne or spaghetti Bolognese. I had to avoid potatoes for about a year as they caused early food dumping. A supermarket ready meal was too large a portion and if I ate it all I got food dumping. You won't have an appetite for a while so you have to learn to eat by the clock, I found about 2 hours between eating worked for me. Did you speak to a dietician before leaving the hospital? You can also make fortified milk by adding powdered milk to full fat milk. It's not about eating healthy it's about getting the calories in. I hope this helps but please ask if you want more information. Kind regards Frank.

Fantastic reply you have answered almost mirrored what I am going through. Right now.  I am feeling almost done  and no recovery is coming my way but your reply has given me renewed optimism.   It,s 2:30 in the morning while I am typing this and in absolute agony unable to find any position to ease the pain.  I have a new prescription at the pharmacy a combination drug of codine and paracetamol. 

       One final question, how long were you taking the pain relief for?.

   Many thanks for your interest.  Maurice

Hi Buzboombang, my (almost 70 year-old) husband is about a week ahead of you - he was discharged on the 21st of December. He didn't come out with a feeding tube, but has had great problems getting to grips with eating - he lost a stone and a half in his 1st 2 weeks at home. A dietitian shed a bit of light on the subject for me when she explained that he has lost the ability to feel hungry; also that his new digestive system needs regular practise to improve.

Instead thinking about him having to eat a number of 'meals' each day, I approached it more as a series of snacks with 3 of them being similar to 'normal' mealtimes with similar types of food. We had a few days where he had 4 episodes of eating and have gradually moved this to 6 on a good day. alongside this, he has found that he is able to eat a little more at mealtimes. He is now on a soft food diet, which has been a great improvement on the puréed diet he was discharged with as it seems to go down more easily. Something else he has found helpful is walking around the living room or up and down the stairs if food doesn't seem to be moving.

A Putnam bed wedge may help with your sleeping Bed Wedge Special Offer - The OPA

I can suggest foods that have worked for us, if that would be helpful - I've spent a lot of time exploring ways to make every mouthful count.

Good luck in your journey, Tiny x

Hi Maurice, I'm glad I could be of help. I can't remember exactly how long I was on the painkillers but I seem to think about 3-4 months. If the painkillers you get which sounds like co-codamol 30/500mg don't help you insist on something stronger. You need to feel comfortable and be able to get a good sleep. I think I was on dihidrocodeine (excuse the spelling). Good luck and I will happily answer any questions if I can. Kind regards Frank.