Hello all, my husband has had the Ivor Lewis surgery along with a small area of lung removed and was home on day 6! Not what I expected as thought he would be in longer, he was keen to get home as he didn’t cope well on the ward once out of critical care as it was sad to say not the best care attention that he was hoping for! Since home he seems glad to be home but management of pain is hard even with the prescribed amount allowed, struggling to sleep in bed as cannot seem to get in a comfortable position easily and feels harder to breathe if to low down.
i am trying to keep him little and often fed but it’s hard knowing what is the best food choices in these early stages but have the list from dietitians but wondering if anyone has any tips or suggestions?
He also has not opened his bowels since the day before surgery and is taking liquid given on discharge to help but so far nothing. I’m telling him that day by day he will feel better and that the pain will get better but he doesn’t accept that it’s a slow recovery.
just looking for advice, guidance from others who have gone through this as it’s the best advice possible, thanks in advance
Hi,
Does your husband have a JEJ feeding tube fitted? If so, don’t get too hung up on how much he eats as this will provide all the calories, nutrients etc. that he needs. If not, then the eating does become more of an issue as weight can drop rapidly. In the early days after my operation, I ate a lot of ice cream, banana smoothies, full fat yoghurt, porridge with full fat milk & cream. Basically anything high in calories. As I moved onto solid foods again, I had a snack lot of nuts which I tried to munch on during the day. The pain does get better. Four or five weeks after surgery I was off all pain medication apart from the odd paracetamol. Sleeping is tricky and I tended to doze a lot during the day. I slept (not very well) on my back to begin with until my scar healed and now sleep on my right side with 3 pillows. Bear in mind that his internal digestive organs have undergone significant trauma and will take some time to sort themselves out. Healing is not just a “slow recovery” but a snail’s pace one. I am neatly 18 months post-surgery and my recovery is still ongoing. Is it frustrating? Hell yes!! Does it get me down sometimes? Also yes! Is it better than having not been suitable for surgery and possibly being dead by now? Yes again. Things are hard now. They will get better. But it won’t be tomorrow or the next day. Patience is key. Also acknowledging any small successes along the way (making it up the stairs in one go, having a shower without needing a lie down afterwards, walking to the bottom of the garden/end of the street/shops, etc). Those were some of mine in the early stages. Now I can manage a 4 mile walk or 12 mile cycle plus a little bit of housework/DIY/gardening. Enjoy being home from hospital and best wishes for his recovery. CB
Thank you for your reply and support you really have helped massively with my worries and concerns and also you make sense with your advice and first hand experience. He does not have a feeding tube so eating will be a day by day learning curve until he can tolerate foods and learn what doesn’t suit him or agree with him. Couple of weeks until we hear back from surgeon about the biopsies so a nervous wait but one step at a time.
Hi Brush
My husband is 10 weeks post Ivor Lewis.
Your man has been through the wringer and is certainly home in a very short time.
pain management is so critical, do you have an accessible GP to add to or modify meds?
My husband is sleeping elevated and from all advice will be forever more, to aid gravity in keeping stomach contents and acid down and for comfort.
for the bathroom side of things, prunes are the best dietary addition over and above all supplements we have found. I added 4-6 to smoothies and it had the desired effect. Now he is back to solid food he still keeps the prunes in his diet to maintain this.
keeping weight on is a major focus. I used high calorie options with a protein focus for example, a scoop of Concorde protein powder, milk, sustagen, ensure and chocolate topping to mask the mix of flavours, plus ice cream and cream and olive oil to cover all bases.
I alternated with a berry smoothie with vanilla sustagen, ensure, vanilla protein, frozen mixed berries, yoghurt, ice, olive oil and the prunes.
I cooked up shepherds pie, pureeing the mince and veggies adding to a smaller ramekin and topping with mashed potatoes with butter and cheese so it was more appetising. Soups using broth and tallow for intensive calories, vitamins and minerals.
The progress is slow no doubt. I have a mantra of 2 days, 2 weeks, 2 months. The 2 days reset multiple times in the early stages post op. Just as a reminder that it will be slow but we will get there.
The learning curve is a steep one. As i said we are only 10 weeks advanced and there are many left of field curveballs. But progress is progress.
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