My 68 yr old husband was diagnosed with oesophageal cancer in October this year (2024) when it was already at stage 4, having metastasised to his spine (T5) and lymph nodes nearby. He went rapidly downhill with his ability to swallow, and when it got to the point where he couldn't swallow at all he had a nasogastric tube fitted which was in for 4 weeks for Fortisip compact feeding. When he was told that surgery was not an option but he could have a stent fitted with the hope that he'd be able to eat and drink again he was hopeful - looking forward to tasting things again (he was a hearty eater before all this, a keen outdoorsman enjoying cycling walking and gardening). Unfortunately, after the stent was put in he suffered a few days of vomiting resulting in an admission to hospital for two litres of water and anti-emetic medication intravenously. He's now sleeping extremely poorly -, is suffering with heartburn and wind pain and barely eating. He's very fatigued. He's lost 3 stone 5 lbs since June this year. Next week he's due to start chemotherapy and immunotherapy on which we are pinning our hopes that the treatment will keep the tumours at bay for as long as possible. However, I'm worried that he won't be fit enough for treatment as he's so weak from lack of sleep and nutrition. I do what I can to tempt him to eat but he says his stomach has shrunk so he cannot manage much (probably true). The specialist nurses and dietician have encouraged him to eat little and often but he just cannot manage it - he says he feels full or nauseous - it is a real struggle. During the day he dozes a lot (catching up with missed sleep at night plus fatigue) so it is difficult even fitting in much eating!
Hi
So sorry to hear your husband is poorly and you both find yourself in this awful situation .My husband was diagnosed over two years ago with Stage 2 OC , the tumour completely blocked the junction between his oesophagus and stomach and he was very weak and fatigued during this time ..After much pushing for nutritional assistance he eventually had an NG feeding line in for four weeks and then during a laparoscopy he was fitted with a JEJ feeding line into his duodenum .and we administered all his nutrition , fluids and meds through the line for many months .This gave him some strength to go through his chemotherapy and major surgery
I don’t know if this could be offered to your husband at a more advanced stage but obviously his lack of nutrition is causing an added issue with his health so I’m just wondering if it would be worth mentioning it to his medical team to see if a JEJ is possible for your husband and if not , are there any alternatives available which would be suitable for him .
kind regards J
Hi sorry to hear about your husbands diagnosis sounds like your having a really horrible time As JPM says I also have a jej feeding line which feeds me 10hrs per night so that I can stay strong for chemotherapy then hopefully surgery.
Sending strength and positivity to you both
Tricia x
Hi Tricia
Just a quick question, how long have you had your JEJ feeding tube in and have you ever had any issues with it? I had mine after my op and from the start felt some twinges (like a stitch you get when running) however this has increased now to the point I can feel it whenever I move around a lot. I've never used it since coming home but when I tried two nights ago I got a bad reaction similar to dumping with bad sweating, awful cramps and almost immediate diarrhea too! Also it feels a bit tender around the stitches too now, the dressing is only changed once a week because I'm not using it much
Hi
I had mine fitted at the end of October before I was discharged I haven’t had any problems with it at all it’s been fine but then I’m unable to eat or drink anything even water comes straight back. I don’t have a dressing on mine which I find quite worrying as it’s only held on with three stitches !
Yeah mine has three fairly flimsy looking blue stitches, probably the same as yours! Then it's got a dressing covering it all. Ik assuming you flush yours twice a day, once before and once after feeding?
I flush it quite a lot as it’s my only form of hydration also I put my meds through it ! Was sort of hoping they might remove it after surgery but I guess they have to check the surgery will work ♀️
Hi
My husband had his in situ for almost twelve months .It was removed seven months after his surgery .. Some have them for a shorter period of time though .I remember it was a Godsend at the time as he had lost over three stone in weight .
regards J
Hi DJ Poorly
i was diagnosed with oesphagael cancer back in March I had chemotherapy and radiotherapy mine is also inoperable. I had my follow up scan and it looks like the cancer has not gone I had a endoscopy last week now waiting for results . But the last few weeks I cannot eat a lot only drinking. Like your husband I am constantly sleeping on and off throughout the day but cannot sleep properly in the night due to heartburn and wind pain. I can eat soup tomato or chicken. Although I don’t want a lot because I feel full all the time . But I do drink at least three to four fortisip drinks aday which is keeping my weight stable .
jayne x
No they definitely won't remove it after surgery as you'll be nil by mouth for the first few days and even after that you'll only be on a small pureed diet. Mine was kept in because I'd had real problems with eating (total loss of appetite and taste) during chemo and they wanted to keep it in as a back up for nutrition if needed.
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