More Complications with Oesophagectomy

I did post this on another, older thread of mine the other day, but thought I would do a independent post , Has anyone here heard of or experienced these problems, and if so, is there any advise you could offer, I am overwhelmed by the news, but my husband is now in ITC getting a tiny bit stronger every day… Many thanks, unfortunately the leak got worse and the join collapsed, my husband had to go back into surgery, he has got through it but is still in ITC on ventilator and Tracheostomy , they had to strip lung due to the infection the leak caused and total remove his oesophagus and bring the end out of neck and the stomach out in abdomen, along with feeding tubes,drains cheats etc… they are now trying to reduce sedation and move forward, he will need to have a big op in a year for reconstruction, it is going to be very hard and I am am concerned for hi,m I am in shock really as he was always so fit. Bless him he has hard a terrible time of it but is still fighting . The plane is to leave bag in neck for 6 - 12 months to enable my husband to get strong enough for another huge op to reconstruct using part of the bowel.. am at a loss now as to how to go forward and keep him healthy.

Doe anyone know of any literature that will help?

Thanks for all your support.

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  • So sorry to hear of this setback, it is a big one but he is in the best place and the professionalism of the team that are treating him should not be under estimated.

    It is of course even worse for you than for him particularly at this time of the year. I truly believe it is harder for the one watching their loved one go through this than it is for those going through it themselves.

    I experienced a few minor setbacks but nothing of the nature your husband is going through so am probably not best set to give advice, but be assured someone on here will have had a similar experience or have knowledge of it.

    All I can say is best wishes to you and him - and here's hoping for a full recovery from this setback- Ray

  • It is tragic that things didn't go to plan but your Husband's team clearly have a good recovery strategy in place. That they have done so is corroboration that they believe he is mentally and physically capable of surviving with a good quality of life.

    His situation is almost certainly extremely rare ,if not unique; hence it is unlikely there is any published literature. But if there was it would be highly technical as between surgeons and probably incomprehensible to us lay folk.

    The best possible source for you are his carers, in offering the proposed treatment and it's feasibility they must be aware of precedents, bend their ears at every opportunity you can.

    The really important thing is to give him the encouragement he will need to get through this.

    We are behind you.

  • I was very ill post my total esophagectomy, I got double pneumonia, then acute kidney failure and had to be resuscitated times. I am still here to tell the tale after this surgery in early 2007 and I have a 5 and 6 year old now. It can be possible to be really ill post surgery and still survive.

  • Hi just read your post and having always read posts on here but nobody has been in the same situation as ourselves. My partner had Ivor Lewis op July 2016. Op went ok but two days later he was taken back into surgery resulting in having the whole of his oesophagsus removed and most of his stomach. Also had a tractotomy.in total whilst in ICU he had four ops, nearly lost him twice. I totally understand what a traumatic experience this is your going through. My partner spent five weeks in ICU then home after two weeks on ward. He like your husband has a colstomy bag on his neck and is being fed by feeding tube. He is also working towards having a reconstruction using the bowel but getting him fit enough is proving very challenging as not only does it take a long time to get over this massive op when goes according to plan, he developed a drop foot whilst in ICU so struggling with mobility now home, so we get on best we can for now. This is such a life changing experience for both of you and like us you will find it very challenging I'm sure. It won't be easy but try stay positive as before op, one day at a time is my motto and one step forward two steps back is so true. This situation we find ourselves in is very rare and I thought we was only people this happened too after op. Please feel free to contact me or reply on here (I'm in uk by way) as it can/ feel a lonely journey ahead sometimes. I hope hubby continues with recovery and am here if you need to talk or want any info/support. Be nice for me too. Sending heartfelt hugs x

  • Thank you so much , your experiences sounds exactly the same , I am with him now in ITC , so will get back to you properly ASAP.

    I am also in UK , It is quite shocking at present he is hating the Tracheostomy .. And drains, and is very agitated , but they have settled him for the moment .

    I hope your partner is keeping well, you too x

    Thank you so much x

  • This is a difficult thing to cope with, and it is unusual for this to happen in surgical terms. But cases like this do happen. One imagines that the important thing is for the lungs to recover from any infection and for his condition to stabilise. This will take time.

    It sounds like you have had a talk with the senior Upper GI surgeon at the hospital, but if not, I recommend this. There will be some ups and down along the way, and there will be times when you despair of progress, but it does sound as if there is a realistic plan in place. In times gone by, I understand that this operation was conducted by inserting a section of bowel to replace the oesophagus, so there is a surgical tradition behind the plan.

    I spent a long time in hospital and got quite frustrated with the thought that the surgeons would not do something to help, but they did explain the need for patience, and that sometimes the important surgical decisions amount to waiting for the body to heal itself. I know others who have spent a long time in ICU recovering from surgery that did not go according to plan, and they are enjoying a good quality of life now.

    I suspect that an Upper GI specialist nutritionist and a physiotherapist are going to be among your allies in the next few weeks.

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