Post-oesophagectomy corrective surgery

[LondonMan]

I underwent an oesophagectomy which removed my oesophagus and part of my stomach 2½ years ago but my recovery has stalled. I now have an “S” bend in my conduit (stomach remnant stretched to replace my oesophagus) which gives me grief whilst eating and results in continuous weight loss.

I have been offered surgery to straighten out my conduit and have been advised as to the risks and unknowns which may arise during this surgery with no guarantee of an improvement in my life. Hence I am faced with the dilemma as to whether or not to proceed.

If anyone else has been through this corrective surgery I would be very grateful if they could share their experience with this procedure. Did it proceed as you were advised, were there any complications, was it a total success resulting in an improvement in their quality of life – i.e eating? I would appreciate an indication of the length of time in hospital and the recovery period.

Any advice or help would be very much appreciated as I am in a quandary – my original 8-week experience in hospital was not at all pleasant.

[Smithyrat159]

Hi LondonMan, I am almost 2 years post oesophagectomy (Ivor Lewis) and had a similar 'kink' in my new stomach from the start. I spent 5 weeks in hospital hoping it would settle but after 3 weeks I had to have a feeding tube and eventually that's how I came home. I could drink normally but solid food wouldn't go down. 9 months later I had corrective surgery. In my case that involved reopening the wound which follows the ribcage so that they could get to the place where the blockage was occurring. The surgery was 6 hours and 2 weeks in hospital. They also took away 'lots if internal scar tissue'.

In the days following that surgery I immediately knew that something was different inside as there was a lot of pain internally, never mind from the scar site. The good news was that the surgery had successfully corrected the kink and food began to stay down (yay). The bad news is that the pain has just got worse. GP's and consultants say it's nerve damage but I've gradually worked my way through different nerve relieving medications to no avail. I'm presently trying Gabapentin but so far no improvement. I've been on the waiting list to see a pain specialist for 9 months so far. I personally think that the pain is partially related to scar tissue again so may need a 2 pronged medication approach but can't get the medics to agree. It affects my life more than being tube fed because I'm in constant pain.

Sorry to be the bearer of bad news but I felt you should know what might follow so you can weigh up your options. I'm still hoping that a pain specialist might sort me out in which case the second surgery will have been worth it. I feel for you and wish you luck.

[Molly14 in reply to Smithyrat159]

I also had surgery for a blockage 3 months after Ivor Lewis and I’ve had pain pretty much constantly since due to adhesions, I still take Oramorph. My feed tube had wrapped around part my bowel causing kinking. I’ve learned to live with it 9yrs on but there are days I struggle. All the best

[LondonMan in reply to Molly14]

Thanks Molly14. You’ve added to Smithyrat159’s warning about adhesions/scar tissue pain. All the best to you too.

[LondonMan in reply to Smithyrat159]

Hi Smithyrat159, thank you so much for your very informative response which has raised issues not identified to me before.

Firstly can I say that I hope you get your pain under control very soon and I think it is disgusting that you have been on a waiting list for a pain specialist for 9+ months. Good luck. Glad that you can now eat solids!

I’ve seen 2 consultants to discuss the proposed surgery and neither have, I believe, mentioned the possibility of nerve damage and certainly not the possibility of ongoing pain. I do currently suffer from very occasional severe pain below my rib-cage so perhaps that is due to scar tissue as you’ve mentioned. I currently have an NJ feeding tube in-place and 1,500 calories a day makes me feel much better, stronger and I’m putting on weight so I don’t feel like I need a second operation. But when the tube is removed,,,.

My corrective surgery includes attaching my conduit to my diaphragm so I don’t know why that wasn’t done at the original oesophagectomy. As a layman my main concern was that I was told that my conduit is very sticky and it will have fused itself to something internally - quite possibly my lungs and they would have to prise it apart with the danger of tearing the conduit, the lung or both.

You’ve added to my quandary, but constructively. Good luck for the future to you.

[Artiquety]

Sorry to hear of your dilemma, and hope I’m not going through the same, but my op was only June, I was told some are ok after a few months, but can take up to a year, sadly I still have issues. And to hear that you are 2 1/2 yrs down the line makes me grim for my future and hope that you get a resolution soon, good luck x

[Libuse]

This may not be what you want to hear but I will tell you my story. 17 years ago I was diagnosed with oesophageal cancer which was inoperable due to size of tumour. I had radical chemo and radiotherapy. From the outset I knew I would never be able to eat or drink again. I am fed intravenously throughout the night and lead a normal life during the except for meals. I inject coffee and a glass of wine in the evenening. I’m now 72 work professionally as an artist and have no stomach issues. It seems to me that a lot of people on this forum might consider this option to avoid recurring pain and discomfort. 😊

[KeepUpTheBattle]

LondonMan

I had something that sounds similar to yourself 5 years ago, but i would explain in a different manner. Forgive me but 's bend' maybe different so i will explain my case as the rest of the description sounds like what happened to me.

Succesfull IL 10/2018 A few months later, nothing was passing through me. Fluids and food backed up into my lungs and while doing so severely stretched my conduit and it took the form of a floppy bag rather than a tube.

Admitted back to Derriford. Lots of head scratching, in the end a Pyloric muscle stretch via a endoscopy camera. It made no difference. 43 days (yes i counted) later the issue suddenly resolved itself! I was sent home.

Happy days for a few months, then the same 'blockage' happened again.

Two weeks admission, head scratching, and the same sudden 'cure' and i went home.

This was repeated several more times over the next six months.

I had a barium swallow to assess where the blockage was, as well as a battery of CT scans, all to no avail as the blockage issue was intermitant.

The doctors really struggled to pin point the reason and i learned to live with it, and could eventually recognise the symptoms as it started.

A year later i was elsewhere in the country and felt the issue returning sim0ly after drinking a cup of coffee at my sisters house. I went to the local A&E as instructed - to in effect have the usual Ngtube inserted to remove the 'backed up' food/fluids in my conduit.

I hit so so lucky in that the A&E consultant on duty saw me 5 seconds after walking in the door, had me in a CT scanner within 10 seconds AND was an ex Gastro surgeon from India with decades worth of practice.

In short the prompt action of this Indian superstar @ Redditch hospital, showed the reason for the blockages to be at the diaphram/Crus where the conduit/Oesophagus passed from chest to abdomen.

He extracted 1.9litres of stuff via an NJ and i drove the 4 hours to Derriford hospital (redditch not being equiped to fix me).

The two hospitals conferred and i was taken into surgery where my Crus was 'weakened' with a few cuts into it, my conduit was pulled down straightened and stiched into place so that it could not 'ride up' and kink.

I was told my revision surgery was a first and somewhat 'experimental', after my original surgeon said 'we dont know what to do to fix you'. Not words you want to ever hear.

Since that day i have been absolutely fine as far as eating is concerned.

I wonder if your 's bend' is the same as my 'kink'?

And could your 's bend' be removed by simply being pulled down to straighten your conduit like i had done?

I would most certainly be asking if that is the case - and it may be worth your doctors taking to Derrifords gastro team who fixed me with this 'experimental' method.

Ive been absolutley fine eating in the five years since.