8 Months Post Operation

I was so glad to find this site, maybe my story can help someone thinking of having Ivor Lewis surgery and those who have survived for several years can give me some incite on what my future might look like. After reading several of the posts I feel very fortunate with my recovery. I am 8 months post op, only spent 8 days in the hospital and returned to work after 3 months. I have been able to eat pretty much anything within reason and put 20 lbs back on. Sleeping continues to be a challenge, with the acid re-flux once in awhile and trying to work with different wedges. The biggest issue I have is still fatigue, the constant ache in my back where they went in and the soreness of my front ribs, this seems to be caused by the puffiness of my stomach pushing against them. I take a couple NORCO each day to take the edge off. If I can recommend anything on helping with recovery is to develop a walking regiment, they had me walking the day of my surgery and worked up to 2 miles 3-4 times a week. As far as eating goes, smaller meals 6 times a day worked for the first 3 months, now I can eat a normal portion meal ( no seconds though). I learned to eat different, no liquids with meals, only room for one or the other. I kept track of my favorite foods and worked around that and tried to avoid foods that did not sit well. In the beginning Milk shakes and Mac & Cheese were my go to foods. I was lucky I never needed a feeding tube, even through chemo and radiation. I start my follow up tests next week and living life with a new respect. Having this surgery definitely changed my life and it gave me a second chance. I could never had made it without the love and support from my wife, kids and everyone that touched our lives.

[Hidden]

Really glad that you are doing so well, and it is an enormous achievement to get back to work after three months. Well done!

Sleeping position is an issue for many people. Sometimes the proprietary wedges do not seem to quite do the job as we would wish. A duvet under the blanket / sheet sometimes stops you slipping down, and roled towels / blankets under the mattress, or bricks under the bed head can be solutions. Ultimately adjustable beds might be a solution (I understand that IKEA might do them?). But trial and error with pillows etc is a cheaper method in the early stages. You can end up never really being able to get comfortable and to be able to sleep for very long, but this normally does improve over time. And things you dwell on in the early hours are always better in the morning.

A packet of Gaviscon by the beside is also worth thinking about for reflux in the night.

Fatigue is a big thing and it can last for months. You really have to be careful not to overdo things, and most people never really get back the strength and resilience that they once had. So make sure that you are kind to yourself (and to your family) by not overdoing things. It depends on how physically demanding your work is, but it does take much longer than other surgery / illnesses to get back to an optimum level, and many people have to face readjustment of their work environment in some form or another.

Pains in ribs and nerve separation do take longest to settle down. When you say your stomach is 'puffy' I am assuming that you are not saying that it is anything other than normal, ie you are not suffering from bloating. Is your digestion system otherwise working OK?

Thanks very much for your post; I am sure others will be interested in how you have managed and be encouraged by it. The whole experience is a lot to come to terms with isn't it!

[Hidden in reply to Hidden]

It sure is and thanks for your response. As far as my stomach, everything seems to be working great, just a little puffy under my lower ribs. They tell me that's where my stomach ended up and it is normal. I was just curious if it was the same for others that have had this surgery.

[mgloughran in reply to Hidden]

I'm almost 3 years out and have similar tenderness under right front side of ribcage and occasional pain in and around the scar on my back. Other than the fatigue factor, back to normal.

[Hidden]

I am 18 months post op for IL. I had been diagnosed with stage 2 and went through chemo and radiation prior to surgery. My biggest problem was sleep and reflux each night when I slid off of the 5 pillows I tried to use. I bought the adjustable bed and have not had one incident of acid reflux since! Your experience sounds pretty close to mine with the exception of me needing a feeding tube prior to and after surgery. So glad to hear you are doing well and each month gets better! And, yes, exercise is critical to recovery. Best wishes!

[Hidden in reply to Hidden]

Thanks for your reply and I think I'm going to look into getting an adjustable bed. Sounds like the best way to go.

[Spikey]

Glad to hear you're doing so well. You don't say how old you are, but, since you said you returned to work after three months, I assume you are under 65.

The fatigue will probably continue. I am now 10 years post op (and recently completed the Coast to Coast walk), but there are still times when I feel so tired that I have to lie down in the middle of the day.

Sleeping position is also likely to continue to be a challenge, as you put it, for a while, but, hopefully, will improve over time. I still sleep with three pillows, but now find that I can lie in almost any position.

The aches and pains should slowly get better. It is early days yet.

Don't worry about your weight. Provided that you eat healthily and take regular exercise, it will be what it will be.

Best of luck with your upcoming tests.

[Hidden in reply to Spikey]

Thanks for the feed back, it really helps. By the way I'm 56 years old and still feel I have a lot of living to do.

[lynnbibb]

Firstly well done on working so hard to achieve your recovery!!!

My husband is almost 6 weeks post Ivor Lewis and has had many complications, but with determination (which he has in bucket loads), hope his recovery is as good as yours.

His main 3 problems at the moment is food taking a while to go down, tiredness and terrible reflux more at night, but sometimes in the day. He is working hard to regain strength, and like you hopes to return to work asap.

Good luck with your continued recovery and keep us posted xx

[Hidden in reply to lynnbibb]

My best wishes for your husband and your right, attitude and determination have a huge part in recovery. A couple things that might help, if he is having trouble right now with food going down, try milk shakes and soft foods , such as pastas. (I loved Mac & Cheese) Then start working in different textures and take note of the foods that don't agree with him. At 6 weeks I was still eating 6 small meals / snacks each day and worked in different foods as time progressed. Right now I pretty much am back to 3 meals a day + snacks, just a normal portion, no seconds and its either liquids or food, not both. One thing that I read really helped with snacking, was popcorn in the evening and it does not upset my stomach. For the reflux at night I take Omeprazole twice each day (once before bedtime) and it really helps. Make sure he's not laying too flat, that really presents a problem for me. If i wake up with reflex, I have taken over the counter Zantac and Tums, this seems to give me quick relief. Sleeping is difficult, but the more I can be elevated and not slip down the better.

[phil]

Hi Larry

I was 57 when I had my operation 10 years ago and what you are going through is completely normal .Sleeping comfortable is always a challenge for me but you get used to it and it becomes normal.The only other long term problem is reflux and it is usually my fault when it happens Basically you after to be aware of the quantity of food you eat and when sleeping be careful not to slip down your supporting pillows. Apart from that it can still be a very good life.

All the best

Phil

[Hidden]

Thanks Phil, your feed back really helps me understand what I'm going through and what the future holds.