Oesophageal Patients Association
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Leak

Had anyone els had the Ivor Lewis operation on here then had to have another operation after to put a stent after having a leak from the new join ... My mum was operated on Thursday and was really well on the Friday but then on the Saturday started struggling to breath... It turns out she had a leak and there was a lot of fluid on her lung she was rushed back down to be operated on to put a stent in it took 3 hours to do .... She is now on a ventilator to let her body rest and let her lung get better ... We are all so worried this happens with 4 percent out of 100 which is just typical for us ... Just want to know has this happend to anyone els on here X

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Hi Calboy. Similar, but not quite. first of all I am wishing your mum a speedy recovery. My husband had the IL back in Nov 2013. It was a 9 hr procedure and went into ITC, by the following afternoon he began to deteriorate and after many tests it was confirmed that his join had leaked. The hospital were brilliant and he had only had sponges with water placed over his lips to stop them drying out at that point, but it was still enough to begin the process of septicemia. The following day he too was rushed back in to have an spillage cleared and re-sewn. This was also a 3 - 5 hr op, I cannot remember now exactly. He should have been tube fed for 2 weeks, but ended up with 8. Hopefully your mum will be better, but Mal's just wouldn't heal and required several Barium X-rays and CT's to find out if it had healed. Thinking back now, I have a feeling a stent was used temporarily, but I can't be certain, If he did, it would have been removed later, yes I am sure he did have one, I had just forgotten. The trouble was being in hospital for so much of the time, I couldn't keep going. I t was 45 mins drive away, with one child in school whom I later discovered was Autistic and my baby. We couldn't visit often so didn't have the chat with the doctors on this. Good luck, Carrie

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Thank you for your reply I'm guessing your husband is fine now ... Was he put on a ventilator after the op and how long was he on it

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Hi Caloy, thanks for the questions, however, due to many reasons, I do not know the answer to the ventilator - I literally had to leave him for days, sometimes weeks especially in ITC as I had no one to help with my baby and ASD daughter. I have all of his records, but have not worked it all out yet. I am also very sorry to say that he lost his battle in May 2016, he survived for 3.5 years, but was very ill. He kept having complications, that were not all cancer related which made him too weak to keep fighting. He had was stage 3 n2 and his came back 4 or 5 times as they had to cut right on the base of the tumour. Like I said, Wishing your mum all the best. There are many success stories on here, my hubby just couldn't get over so many hurdles.

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I'm so sorry to hear that sad news X

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So sorry to hear about your hubby and the awful struggle it must have been with little ones ! It’s been bad enough as it is these last 7 months, God knows without small children. That’s so sad .... I wish you well xx

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Thank you for your kind thoughts. I just hope I can use this experience to help others and help my children understand. Wishing you all the best for the future. xx

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Hi Calboy

Sorry to hear about Mum , it was only last Friday whilst we too were at Broomfield that I was thinking to myself that you and your family were in the same places we’d been many a time . I hope she gets over this ‘blip’ ASAP , I’m sure she will. A friend of ours had to go back to theatre because of struggle to breath and was in ITU for few days on a ventilator, he had to stay in for a few weeks again at Broomfield but then came home and was ok . Wish her well!!

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Thanks Debbie X

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Hi Calboy,

My husband had the same after his op (coming up to 4 years now). He was in hospital for 2 months in total, and had to have a tracheostomy to wean him off the ventilator. The stent that was used to repair the leak was a permanent type. It took a long recovery period, but he eats really well, although smaller amounts and somewhat more mindfully than before. He's due another check up this week, but he has recovered most of the weight he lost post op. I wish your mum all the best. Stay strong and optimistic and take things a day at a time.

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Thank u for letting me know ... It's such a big set back it just is horrible that she can't speak to us with that in her neck ...

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Also how long did it take for your husband to breath on his own ?

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The big thing for him was being weaned off the big ventilator - communication was very difficult as he was sedated to allow him to tolerate the tube. After he'd been on it a couple of weeks, the doctors wanted to get him on to a smaller mobile ventilator so that he could have periods without the ventilator to build him up - to remove and reinsert the main ventilator needed time in theatre, whereas it was easy to disconnect the smaller machine for short periods. He was terrified after being through so much, but I got the consultant to explain it all to me in front of him - they promised him nothing else would go wrong. I think that once he had the tracheostomy it only took a week to wean him off a breathing tube. They were then able to move him from the HDU to his own room on a normal ward - he couldn't go into the ward as he'd contracted MRSA and another bug. After that he had physiotherapy as he'd been bedbound for 6 weeks, and came home two weeks after that.

It was very hard work, and distressing at the time, but he is evidence that you can get through these set backs. I was so thrilled to hear him speak again!

Best wishes and I hope your mum makes progress.

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Awww thank you ... Yea I know it really is distressing not being able to hear there voice ...

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