Ivor Lewis procedure and complications

[Artiquety]

I had the Ivor Lewis Procedure done on the 8th June, apparently had a leak and had to return back into theatre. However another scan after showed that the hole was in a different place. The surgeon told me that antibiotics and time should support this and it would heal. However, my SATS went down a few days later and it was touch and go with 90% added oxygen. Pneumothorax in both lungs complicated the surgery, alongside two added dvts, meant I had to go on blood thinners.

I was then transferred onto a critical ward on the 13 June, constantly coughing and regurgitating. Being very unlucky, I am now trialling a new drug. I cannot go on water tablets and therefore retained a stone of fluid and look like a whale!

It is now Monday 13, listening to constant drip feed buzzers-that sends you to distraction, now on an air bed, and no they are not comfortable. They poke and prod in the wrong places as to where my drains and scars are situated.

Physio push you hard to exercise, but after coughing all morning, unable to eat/drink - to get any nutrition: I am in a catch 22 situation. And to think I had a physically fit gym body to what is now -a jibbering wreck, full of oedema and feel that I’m in a tight corsette!

.Please-Get me out of hospital 🙏

[rayw55]

Stay positive, I had similar issues when I had my IL op but that was over 14 years ago . It is a long road that you are on and there may well be times when you are not making the progress you would like, but.......your here and many people are not having needed this procedure but not being either fit enough for the op or being diagnosed too late. It's early days but I'm sure you will complete the journey, stay strong and positive, it makes all the difference.

[CorfuSunseeker in reply to rayw55]

I can sympathise with having had a leak after my surgery last November. Lying in bed for a month on wet sheets was no fun. I don't think my complications were as bad as yours, but at the time there was nothing worse. Eventually they got on top of it and thank god I seem ok now. I hope you have the same outcome and I wish you all the best.

[Artiquety in reply to CorfuSunseeker]

Bless you, it’s becoming a common procedure by the sound of things, if only GPs send us to gastro for cameras and listen to those warning signs, but some go silent. Hindsight’s a wonderful thing.

Take care, thanks for replying

[Artiquety in reply to rayw55]

Thank you for your kind words, they mean so much and gives me a light at the end of this tunnel x

[fortunatus]

Horrible. A leak is what we all fear. You are remarkably lucid in describing your situation and you are not in ITU as I was for two weeks after my leak (plus induced coma fo 48 hours). This suggests you will get through OK. But I am sure, much as you dislike it, hospital is where you must be until things are fully under control. Too early a release is not a good idea. Hang in there.

[Artiquety in reply to fortunatus]

I was in ICU for three weeks and they nearly lost me, but didn’t induce coma: thank goodness, but poor you. I’m just on a critical care ward now and this is the third week, it’s been gruelling, as you know. One thing to note is that I didn’t have the GTN tube, nor a spinal block, and that makes things more difficult in them controlling the pain meds. Didn’t like the hallucinations though. 🤪 The dumping and regurgitation is awful and trying to find a med to suit has been a long slog. I’ve only just started to eat small bitesize, onwards and upwards we soldier on fighting for life. Now dreaming of sitting on a beach. Thank you for your support and hope you come out fighting fit x

[PopandMo]

sorry to hear you’re having a rough time of it. I’m getting on for three years post op and it’s been a rough ride. As others say, you’re still here and it’s very early days. It’s a rough road-I was on a jeg feed for 8 months -but hang in there and the bad days will improve. Wishing you well.

[Artiquety in reply to PopandMo]

Dear pop and mo, thank you for your kind words. When hospital take over your life from April-July you feel imprisoned and claustrophobic. It’s like “Get me out of here”, but after being a physically fit bunny left to a pile of scaffold that cannot stand knocked me for six.

But I am so glad of the forum that brings is all together :to learn how individual, each life experiences have been so different and difficult in each case. We have such complicated designed bodies, that somehow adapts.

Thanks again, and make every moment of life a treasure to behold x

[PopandMo]

you’re very welcome-I know it’s a difficult road, I still struggle with all the usual niggles and like you miss the fitness I once had! But I’m still teaching taekwondo at 62 so that can’t be bad! Hang in there ☺️x

[Artiquety]

wow that does sound encouraging thank you your uplifting words, I’ve been sobbing my soul case out looking at those who do not return or cannot go back to being fit again, but mind over matter and perseverance is they key as you convey, I’m 60 and tried staving away from arthritic joints from seizing , the endorphins from doing exercise is paramount: once I can get protein down, only just had 4 small meals to date, fortisips are shudderingly sweet.

Thank you again, very much appreciated, namaste

[Andersl]

I was in hospital a few days last week and the other lady in the ward was feeling just like you. She'd developed a chest infection and they'd put her on antibiotics and were feeding her intravenously. This had triggered water retention and awful diarrhoe

She couldn't believe how quickly she'd gone downhill.

I'm sorry I can't give you any explanations... I have a different cancer.

I just wanted you to know it happens to others in your situation. I do hope you get some answers soon and start to feel better.

[Artiquety in reply to Andersl]

Thank you for your kind reply, drugs have got a lot to answer for nowadays, hope your friend gets well soon xx

[Molly14]

Hang in there - being fit will have helped you immensely - you can go through so many complications along the way. I’m nearly 9yrs post Ivor Lewis and like you I was very fit. Take it day by day. I still have a lot of side effects and have to pace myself but lead a very active life. Xx

[Artiquety in reply to Molly14]

Thank you for your positive words, we just have to accept that we have added flaws with old age and cannot heal as well, sadly. Perhaps I should watch more comedy and start to belly laugh more, this pain is excruciating when it starts xx