Another update on Peter

[Valerie01]

hello 👋 everyone here in this lovely group I would just like to say thank you all for all of your support in this very stressful time so hear goes we have had a rough 2 weeks pete still not able to keep food down he is on average losing 3lb a week in weight have today had conversation with diatishon and have agreed the best way forward is to put him on a night feed I think its called peg feeding it goes through his feeding tube at night while he's in bed we will get everything we need to do this at home so he doesn't need to go into hospital for this i just have to be taught how so we will get this in place in about 4 days we have been given pomition to put the ensure through his tube 3 a day until the feeding starts as he cannot keep anything down at all not even water sometimes he keeps soup and yoghurt but not often tomorrow we have telephone consultation with consultant so I'm going to request for a scan to see what is going on with the leak in his esophagus thanks for taking Time to read this and I was wondering if anyone else has had to go on feed after the operation pete is now 4 months post opp but 3 months was in hospital

[Bunny69]

Hi Valerie,

I was on overnight feed to aid weight gain following op. It is easy to do and you get used to it where it becomes second nature. It does take the pressure of trying to get Pete to take enough in. I stayed on it for a few months. District nurse came round for a while but they felt they no longer needed to as we were managing ok. It may help Pete to heal as less pressure being put on new plumbing.

Take care

Bunny

[Valerie01 in reply to Bunny69]

Oh good because I am or feal like I'm constantly nagging him to eat but he trying just nothing stopping in him he had night feed in hospital but it was coming out as fast as it whent in did you have the same problem with it

[Bunny69 in reply to Valerie01]

I was ok on it, it can go right through but I think that can be helped by tweaking the flow rate. My jeg got a bit uncomfortable after 7 or 8 months and it was taken out. I had my feed overnight so as not to need to carry the pump round during the day. The company that set the equipment up delivered the bottles once a month based on prescription quantities.

I was on kabi bags in diagnosing hospital but after operation went on to bottles of a different type who's name,escapes me. Did you ask about the glue procedure for Pete?

Bunny

[Valerie01 in reply to Bunny69]

His sergen said that they cannot do any more operations just yet not even to put camera down his throat to see what's going on bludy covid stopping everything

[Bunny69 in reply to Valerie01]

Forgot they had stopped endoscopic procedures. We were trained on the feed in hospital and were pretty competent before coming home. District nurse came for a while but in the end we were doing feeds and the flushes etc ourselves. The only issue was when a new jeg was fitted that had a different fitting to original one as they were no longer available. The new type had a valve that had to be opened but we soon got used to it. It definitely took the pressure off the trying to get enough in normally. I was back on nil by mouth for about another three weeks following leak and having drain fitted through back. There was a delay in taking it out due to team not knowing if I was able to feed well enough but by the end as weight went back on it became more uncomfortable.

Bunny

[liz_crisp]

Hi Valerie. That sounds like good news. It will make things a bit easier hopefully. Like Bunny says it takes the pressure off the new plumbing.

Good luck.

[Valerie01 in reply to liz_crisp]

thanks I hope it does work 🙏

[liz_crisp in reply to Valerie01]

Me too I have my fingers crossed and praying

[kiddy]

Hi Valerie,

I hope the feed works for him. The dietician is the best person to monitor what feed is suitable. I had Jeg feeding in hospital and although I had the Jeg in when I came home I didn’t need to use it. Hopefully he will heal and be able to eat on his own soon.

Keep safe

Debbie

[Zippy34]

Hi yes I am on this . My op was late October but as my throat keeps closing up and my weight loss was so bad I was put back on a feeding tube as well I have to take pancrex power every 2 hour through the tube . It has worked for me and now putting on weight. It is a slow process. The company that supplies everything are very good.

Take care.x

[Notknowmuch]

Pete will then have the essential nutrients to gain weight. Probably you’ll be shown how to flush the tubes.

My husband left hospital with the tube still in but he didn’t need to be fed through it. He was able to eat very small meals but I still have to flush the tubes twice daily.

It was 6 weeks since his IL operation and a few days back (on Monday) he finally had the feeding tube removed.

Now I am to clean the dressing every 3 days until no more stuff leaks, then remove dressing to let wound continue healing.

[Valerie01 in reply to Notknowmuch]

Don't you have district nurses that come to do that

[Notknowmuch in reply to Valerie01]

I’m not sure if they have such a service in Australia.

[Notknowmuch]

Before my husband left hospital, the nurse gave me 1 lesson on how to flush the feeding tube (2x a day for 4 weeks)and give him the blood thinning injection (to be done daily for 14 days)in the tummy!

[blueknitter]

Hi, Valerie,

My husband had an Ivor-Lewis in September, 2017. At the time of his surgery a feeding tube (j-tube) was put in place because the surgeon didn’t want him to eat anything by mouth for two months so his body could heal. We thought it would be removed after that time.

Due to lack of appetite (a chemo side effect) & the inability to eat enough by mouth, my husband has had to keep getting night feedings through his j-tube. Early on we had to go to the surgeon’s office because his tube had stopped up, but now we can handle just about any problem that comes up. Once we got the hang of it, it’s been really easy to do. Over time you’ll become an expert.

Prayers for Pete & you, too.

Linda

[Valerie01 in reply to blueknitter]

Oh my they put tube in when they did operation fed him through it while in hospital but he was in 3 months before he came home due to complications he had started to eat soft food but then he got Pneumonia and had antibiotics and steroids at home but since then he carnt keep food down so that's why he was going to start night feeds but his tube fell out so never got to start it lol he is on the mend again now still carnt keep food down hopefully they will get him sorted and home soon

[Guitarhero]

You will get used to the tube feeding. My husband had his jeg tube for 5 months post op in March last year. Stay close to your dietician. They are invaluable. Ours is the one who has been constant through our 2 year journey, still having a telephone consultation last week with him as he’s not eating well at the moment and losing weight too...

[Valerie01 in reply to Guitarhero]

Its hard journey and I'm serton we will get there soon im sorry to hear about your husband i hope his appetite comes back soon as well x

[Guitarhero in reply to Valerie01]

It’s up and down all the time. Any changes have a bit effect, he was on anti biotics recently fur a urine infection and every day he was sick....you literally have to just focus on every day. Even now 2 years after starting to feel ill before his diagnosis. Treat each day one at a time xx