Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

J-tube formulas

Dan D Lion
Posted by

I am due for surgery to remove my osopheagus in mid May. The surgery doesn't phase me, but the thought of the 'food' that will be administered via feeding tube does.

Does anyone have experience of a J-tube, and in particular, any 'real food' alternatives to the synthetic formulas that are nutritionally complete but have never seen a real vegetable?

I'm struggling to find anything in the UK, and even those in the US seem to struggle with the J-tube due to clogging issues.

Help!

Thanks.

Garyb
Posted by

Hi Dan,

I have just had my tube removed yesterday half way through my post of chemo after having it since jan the 07th. For me it was a life saver, a pain in the a*^e but without it I would have really struggled. Especially post surgery it was essential for at  least 6 weeks where eating anything at all was very hard and during the initial cycle of post op chemo I picked up an infection and couldn’t eat at all so it was essential for me.

The tube itself and the pump will become routine after a while and as longbow as you keep it clean and flushed it’s generally ok although mine did kink inside a bit which made it hard to flush.

IMO I would see how you go as the post op phase can be very tough as can the post of chemo which I would go as far to say is as bad as the surgery, for me anyhow.

As for alternatives I’m not so sure, it’s more about the practicalities or swallowing and digesting with your new mechanics that may hold you back for a time.

Good Luck 

Nothing worthwhile comes easy.
Dan D Lion
Posted by

Hi Gary, thanks for taking the time to reply and glad to hear you're on your way to recovery.

It's not that I don't want the tube, I know it will be essential at times. It's just that I don't want to be pumping myself full of 'synthetic' food and so am looking for an alternative that can be administered through the J-tube.

Out of interest, where are you being treated? I'm at Royal Surrey.

Cheers,

Dan

Garyb
Posted by

Hi Dan,

I was operated on at Addenbrooke’s who did a fantastic job. If I remember the early days the food through the tube was generally decided by how well my body was reacting to the surgery, I had a leak so had to switch to a lower fat version initially which was then changed to an energy booster which I stuck with. You will be assigned a nurse locally who will be assigned with looking after your needs along with a dietician and hopefully they may have some better ideas. I was eating soft foods within a couple of weeks and tried to use the pump when necessary and I found the odd night off didn’t do any harm.

best regards 

Nothing worthwhile comes easy.
Zappaman
Posted by

Hi Dan, I'm not sure what you are worried about with the nutritional supplements in the jej feed. I was eating after about 6 days, just soft easy to swallow foods. Once you are doing well and gaining weight you can come off the nutritional supplements. I only had the Ivor Lewis surgery as I didn't see the benefits of the chemotherapy and radiotherapy, I was more concerned about the damage they can do to your body. Unless you are going totally organic on all that you eat just about anything has contents of no nutritional value. I think I came off the nutritional supplements after about 2-3 months and I don't think the nutritional supplements did me any harm. You can eat healthy food whilst taking the supplements. I'm almost  30 months post surgery and enjoying life and eating quite well. I would love to be able to eat a wholly organic diet but it would be too expensive and a limited choice. Good luck with the surgery and your quest for food supplements that are natural. Kind regards Frank

BrentS
Posted by

Hi Dan

I had a J feeding tube, as do most people after Ivor Lewis, I think.

I can’t really see what phazes you about this. But I was ok with giving myself injections during chemo. Everyone is different, but the training the nurses give is very thorough and easy to follow.

I didn’t need to use it once discharged, so perhaps this is where some people have difficulties keeping it clear. I think this varies between centres. Like Gary my surgery was in Addenbrookes.

They tend to be high calorie feeds. Administered initially by a pump. If there is any problem with a lymph leak they switch it to a low fat, high calorie one then resume to the full fat one once the leak has healed after a couple of days.

As I say I didn’t need to use mine at home. I think this was because I was managing soft food very well. 

Counting the days, making every day count.

Brent

Dan D Lion
Posted by

Hi Brent,

Thanks for taking the time to reply. There may be some confusion here, I have no issue with using the technology and I understand why it is required. I too am currently intention myself. I am simply trying to avoid filling my body with unnatural nutrition.

So far I have worked hard to change my diet and 'eat clean'...or at least cleaner. It seems to me that once on the j-Tube I will have absolutely no control over what is being put in to my body.

The formulas are generally filled with sugar and vegetable fats in order to deliver the calories, these are two things that I have been actively avoiding.

This is my frustration, the undoing of so much hard work.

However, if I like you can stop using it once discharged then I'm a little happier about it.

Dan D Lion
Posted by

Hi Frank,

I've worked hard to avoid packaged foods, non-organic veg, grain fed and/or highly processed meats and dairy, added sugar, vegetable fats etc.

The formulas are full of sugar and/or vegetable fats, along with many other ingredients that some believe promote cancer growth. I am simply trying to avoid putting these things in to my body.

I think my aim will have to be to get off the J-tube asap after surgery. I don't want to be feeding on it for months or even weeks.

Thanks for taking the time to reply.

Dan

KevRover
Posted by

Hi Dan,

I was operated on at Aintree Hospital in Liverpool (1st July 2016) - was sent home with a j-tube and was "fed" Isolite (I think it was called) each night for just under two weeks ; the only thing that bothered me (and moreso my wife) was the constant whirring of the valve throughout the night. I was not too bothered by what was being pumped in to me, I guess I just put total faith in the experts and did what I was told.

Hopefully you'll be lucky like me and not have to use it for too long,

Good luck in any case

Kev.

BrentS
Posted by

Same here Gary, the post op chemo was worse than the surgery. 

Mir might be an Addenbrookes’s thing!

Counting the days, making every day count.

Brent

Zappaman
Posted by

Hi Dan, I do understand where you're coming from about the unnatural food supplements. If you have not lost too much weight and feel confident that you can get enough nutritional value from organic vegetables and fruits then you can decide not to have the jej tube fitted. Remember consent is required for anything they want to do to you. Maybe you could ask to speak to a nutritionist and explain what you want to put in to your body. I think the supplemental food is to try to get you gaining weight and in theory stronger quickly. I agree with you on the sugar and chemical sprayed vegetables. I couldn't swallow much prior to surgery so started juicing green leafy vegetables and greens in general to get goodness in. The trouble was finding enough organic vegetables and fruits and there was very little choice. In a similar way that is why I didn't have chemotherapy and radiotherapy prior to surgery. I also fasted for 4 days a couple of weeks before surgery, just drinking distilled water and it didn't do me any harm. So if you strongly believe that you can get enough nutrition without the supplemental food tell them what you want, not what they want. I believe you must do what you think is best for you, good luck and kind regards Frank.