hello, I am 6 weeks post op, I had keyhole surgery. I am still having a problem with my breathing and can only have water as here is a leak

where the oesophagus was joined to the stomach. I have a temporary stent fitted and am having liquid food via a tube.During surgery my spleen was damaged so thats not working properly and I have to take antibiotics . I keep being sick but it is just like whie foam. Is all this normal, and I am quite alarmed at the weiht loss, I have lost half a stone in a week.Has anyone else had the same problems. I am so looking forward to eating again

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  • I didn't have keyhole surgery, mine was open but I can agree with a lot of things you've said there - six weeks is very early days and with you not being able to eat at the moment just try and think of the weight loss as inevitable at the moment and when you're able to eat again you will be able to at least slow that down. As for the white foam stuff I had that too and 18 months post op I'm now feeling great, I've lost a lot of weight too but I can eat most things in small quantities now and I'm back at work full time, I went back five months post op and work a 50 hour week and I go to the gym five times a week. Things definitely do get better I promise - you're at the very start of it all and every month will be an improvement.

  • Hi,

    I too had keyhole surgery, which is less invasive, but it is a big operation and compications are frequent.I lost 3 and a half stone post-op and most of that was within the 2 months after surgery as I went back onto chemo (I've since put on half a stone 22 months post-op) . Allow yourself time to heal and get over the compliactions and try not to worry about the weight loss too much. Your team should be able to help/reassure you about the complications. I found it helpful to speak with my surgeon and my nutritionist for back up and advice during the regular post-op follow-ups (a follow-uo at 6 weeks with your surgeon normally happens as part of the process; have you had that yet?).

    Dave

  • Hi. Sounds as though you are having more problems than most. I am 19 months post op and I had a leak so had to have 'liquid sustenance' and nothing to drink for 4 weeks. I lost 3 stone (down to 10.4 stone) and have remained at this weight ever since. Now eating more or less normally 3 times a day but get uncomfortable afterwards if I eat too much. I find it difficult to judge how much to eat. It also depends on what I eat. Fish is good and seems to digest easier? You will have to face the challenge of learning what and how much to eat. Most recommend that you eat little and often which I find hard to do. I still get the occasional feeling of wanting to belch and then bring up this white 'phlegm?' Dont think its anything to worry about. Good luck - think positive and do what your 'Team' suggest.

  • Hi Alex, thanks for replying, this is great as I adore fish

  • The leaks do get resolved, but it can be a very frustratingly slow process to go through, and you will inevitably lose weight until your system is up and running properly. It will probably seem that the surgeons are doing nothing about it, but in truth the best option is sometimes to watch and wait for the body to heal itself.

    Are leaks normal? Not really, but there are a proportion of surgical cases where there is a problem with the surgical joints / leaks, and they do often get sorted out by the body's natural healing processes. You have to avoid eating through the mouth whilst all this is going on. In my case I had only ice cubes for a number of weeks, not even water.

    Is damage to the spleen normal? No. I think that the senior consultant would be concerned that this has happened and should be explaining what is happening so that you recover from this unintended event.

    Is trouble with breathing normal? Very often people do have problems with getting their lungs working properly again, particularly if a leak / infection is involved. It gets very debilitating and completely saps what energy you do have, but take advice from the physiotherapist and try and get your lungs working as best you can. It seems totally unreasonable what they expect you to do, but you have to try and regain the facility to do deep breathing as soon as you can, and to keep to a benign exercise regime. This is easier said than done.

    You do get cravings for favourite food and drink, and you will eventually be able to indulge some of them, but you might find that your taste buds have changed temporarily, and you will need to ease your way into your new eating regime very carefully and slowly.

    You will probably end up with a new, normal, lighter weight. Try not to get too concerned about this aspect, but you are entitled to feel grief at losing a few curves for a while. The poll shows that losing quite a lot more than you have done is quite normal; the body itself does cope OK.

    Despite all these problems it will be OK in the end, and worth waiting for!

  • Hi Alan, your advice has helped me a lot to adjust to the new me, many thanks

  • Hi Alan

    My sister had the Ivor Lewis in April tumour/nodes succesfully removed. 24 hours after being let home from ICU she couldn't breath...her lung was punctured by shard of broken rib ...apparently ...and she was readmitted and chest drain inserted. We were told she had an anastomotic leak at the site of surgery (caused by breathing too deeply) That was on 4th May. 4 months later discharged from hospital to my care, Chest drain, hickman line and j-tube still in situ for feeding. She has been readmitted with infections etc and for various endoscopic attempts to close the hole, she had a stent to promote healing, didnt work. The latest option was to redo the operation but I think surgeon loathe to do it again sister is only 47kgs now. He said last week as her chest drain fkuid appears to deducing to 200ml a day he wants to wait a bit longer to see if hole heals naturally. There is a fstula now from op site to chest drain. Sooooo.....do you know of a sceanrio where 7 months post op the hole would heal naturally? My sister has been nil by mouth since 25th April and is frankly going out of her mind....we are medicating her for that!!! I am dling it cold turkey.....every day is a nightmare....we go to hosp every week either planned or unplanned to sort infections and the like. Sorry, this sounds like a rant now.....although this has been worst thing ever we are thankful that shd no longer has cancer...but would be nice to have some reassurance that our situation is not unique and she WILL start the road to recovery soon, at moment we are in limbo and trying to stop her strength from dwindling in case she has to undergo a second operation...which would be the full Monty one again...he has told me that much at least! Any reassurance you could provide would be very much appreciated. #feelinglost

  • It must be a very difficult and bleak time for you both, because these things do sap your stamina and morale, especially when there is little sign of the real progress that you want to see.

    Revising these operations is something that needs to be done by a very experienced Upper GI (ie gastrointestinal tract) surgeon, with St Thomas' in London (James Gossage), or Prof Mike Griffin in Newcastle on Tyne the likely surgeons. So it would be worth asking for a second opinion before embarking on this option. I am wondering whether traditional, 'open' surgery rather than laparoscopic surgery might be a better option, but this really is a technical issue that only an experienced qualified surgeon could answer.

    Surgeons are conservative in what they contemplate doing for very understandable reasons. The issue does seem to be the infections and slowness to heal, and you are quite right that your sister does need to have as much strength and fitness before any further operation like this.

    I had a leak that took a couple of months to heal, and they do sometimes take longer. It is a very bleak and dispiriting process to go through but in some ways it is more important that the leak is making some kind of progress rather than the actual length of time involved. I think seven months is an unusually long time, and I think it is probably time that the surgeons consult their colleagues elsewhere in the country to make sure that everything possible is being done, if they have not already done so.

    Being an out-patient might, feasibly, have a bearing on how urgent this might be regarded, but that is pure speculation on my part.

    Loss of weight does seem a very visible sign of things not being right, but taking in nutrition is much more important than the actual weight. Gentle physiotherapy is also important, if your sister can stand the thought of it.

  • Thank you for your prompt replay Alan....very sound advice there. I have thought about second opinion...our GI Surgeon is Ahmed Hassn. I should say that although Gail was sent home she is treated more as an inpatient eg we ring the surgeon's specialist nurse and arrange to go in ad hoc (we are going today actually because the drain is blocked again.. I only rang her this morning) so no complaints in that regard. So, thank you for your feedback, the fact you think it is a long time helps. HOW long can my sister (57) go on waiting for things to heal, that's the dilemma, appreciate that second surgery brings its own risks he mentioned an end November surgery but because he thinks drain is slowing down he has postponed that option. We may speak to him today. If you like I will let you know final outcome. Many thanks

  • PS...how would I arrange a second opinion, assume privately?

  • Ask to see the senior surgeon at the hospital and tell them what you have in mind. Ask them for a surgeon they would have confidence in themselves. You can mention the names I suggested. You are entitled to a second opinion on the NHS. Most surgeons will look at this as a very constructive process by the way.

  • Hi, I had the same problem as you with a leak I was admitted into hospital so they could sort no eating or drinking for about three weeks but the good news that was 20 years ago it is a long journey adjusting but you will get there all the best take care.

  • Hi Joseph, thank you for your reply. I am now feeling more optimistic

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