Re: Re:Dilatation succeeded and no more leakage--

[Guest guest]

Hi Isabella

My J Tube only goes in a short way and a baloon stops it from coming out. The open end is like a catheter and not a screw type though I had a screw type as you described earlier but this J Tube type only goes up to a certain size so I belive and the smaller sizes kept getting blocked and that is why I had to have a bigger size each time. I was taught how to unblock my J Tubes using a syringe but they still got blocked up. What upsets me now is that I have to use a J Tube that you can only push the end of the giving set into the end of the tube (rather like a catheter) and therefore with the feed pressure inside the tube forces out the giving set when I set the pump to pump out 50 mils per hour. Does that make sense? The specialist nuse who know all about these feeding tubes has told me to stop using the pump and put the syringe in the end of the J Tube and put the feed direct into the syringe at a rate of 50 mils an hour and let gravity take the feed

into my tummy. She told me to do a total of 150 mils 4 times a day for now and that I have to see my dietician to work out the rate. Bonkers isn't it? I am getting pains in my tummy now on my left side about an inch or so from where the J Tube goes into my tummy, nobody seems to know what is going on here and I am getting madder and more confused. Just wait until I see the doc in clinic.

Dilatation succeeded and no more leakage

Hi all,

Yesterday I was too tired to post what happened, so I waited a bit.

The dilatation was very succesfull I can now eat and drink again. With a kid's tube they were able to dilatate me. The dilatations will be repeated every week now until they are able to do it on a less frequent basis. I will need about 15 dilatations, probably even more, but the doc's are all sure it's just temporary as they've never seen it be a permanent problem before. They are very very confident and as Dutch had the same trouble and needed weekly dilatations as well I am very confident now too. I am soooo relieved.

Furthermore the leakage of the J-tube has been solved. The surgeon put the tube a bit further into my intestines, removed some tissue piling out of the wound and he re-newed the J-tube stitches (my poor Romeo fainted while he did that...). Indeed this all did the trick and the tube can run full speed now without leaking a drop!

I feel fine again, though the J-tube wound is a painfull due to the happenings of yesterday. The best thing is that I feel positive and confident again, especially because the dilatations that will be done weekly now (thus meaning I won't have days of not being able to eat and drink again).

Thank you all for your support!!!

Love,

Isabella

[Guest guest]

Hi ,

Oh my, that is a mess you have with your J-tube, pfffffft. I had to bolus for 2 days (injecting the food with the syringe once an hour) and I got sooooo tired and fed up with it! But I can imagine with the type of tube you have now, you have hardly got another option but to bolus the nutritions in! It certainly makes sense the way you describe your tube is now and I can imagine pressure loosening the thing thus making a mess. The only thing that doesn't make sense is the clogging/blocking of the smaller type of tubes, as this has got nothing to do with your body, only with the tube and the feedings. Do you have to use a special type of feeding? And what speed did you have your feeding on? As I notice when it is on 40 it clogs a lot quicker than when it is on 80 (which is logic to me, as the speed gives the pressure to not clog on the sides).

I wish I could help you out, but I cannot... Hopefully your doctor can help you out and give you relief! Have you already got an appointment now?

Wishing you good luck!

Isabella

Dilatation succeeded and no more leakage

Hi all,

Yesterday I was too tired to post what happened, so I waited a bit.

The dilatation was very succesfull I can now eat and drink again. With a kid's tube they were able to dilatate me. The dilatations will be repeated every week now until they are able to do it on a less frequent basis. I will need about 15 dilatations, probably even more, but the doc's are all sure it's just temporary as they've never seen it be a permanent problem before. They are very very confident and as Dutch had the same trouble and needed weekly dilatations as well I am very confident now too. I am soooo relieved.

Furthermore the leakage of the J-tube has been solved. The surgeon put the tube a bit further into my intestines, removed some tissue piling out of the wound and he re-newed the J-tube stitches (my poor Romeo fainted while he did that...). Indeed this all did the trick and the tube can run full speed now without leaking a drop!

I feel fine again, though the J-tube wound is a painfull due to the happenings of yesterday. The best thing is that I feel positive and confident again, especially because the dilatations that will be done weekly now (thus meaning I won't have days of not being able to eat and drink again).

Thank you all for your support!!!

Love,

Isabella

[Guest guest]

Hi isabella,

I have been reading your posts with some trepidation and a feeling of guilt as you are still a ways from living a 'normal' life post surgery. I wish you good luck with the dilatations that you seem to need regularly. You are very unlucky to have developed this scar tissue that keeps blocking your new oesophagus.

My main reason for posting is about your blocked j tube. I was on Enteral feeding through a J tube in 1995 for 6 months, and every time it got blocked up i used to flush it with Coca Cola!!! this was the treatment prescribed by the doctors and nurses in hospital, and i continued this at home. I t certainly works. I would just syringe it up and then flush the tube with it. Coca Cola is very potent at clearing away built up muck in the tube. You might want to try it.

Good luck and keep your chin up - you don't deserve to have these problems, but hopefullly they are just passing nuisances that will soon be a distant memory.

Love,

Deb from Melbourne Australia

Dilatation succeeded and no more leakage

Hi all,

Yesterday I was too tired to post what happened, so I waited a bit.

The dilatation was very succesfull I can now eat and drink again. With a kid's tube they were able to dilatate me. The dilatations will be repeated every week now until they are able to do it on a less frequent basis. I will need about 15 dilatations, probably even more, but the doc's are all sure it's just temporary as they've never seen it be a permanent problem before. They are very very confident and as Dutch had the same trouble and needed weekly dilatations as well I am very confident now too. I am soooo relieved.

Furthermore the leakage of the J-tube has been solved. The surgeon put the tube a bit further into my intestines, removed some tissue piling out of the wound and he re-newed the J-tube stitches (my poor Romeo fainted while he did that...). Indeed this all did the trick and the tube can run full speed now without leaking a drop!

I feel fine again, though the J-tube wound is a painfull due to the happenings of yesterday. The best thing is that I feel positive and confident again, especially because the dilatations that will be done weekly now (thus meaning I won't have days of not being able to eat and drink again).

Thank you all for your support!!!

Love,

Isabella

Get the name you always wanted with the new y7mail email address.

[Guest guest]

Hi Isabella

I use a feed called Nutricia Multifibre 1200. It is pretty thick and is very strong. My Dietician recomends it because I hardly swallow any solids and very little liquid. I have to have a feed at the rate of 75mils per hour or I loose weight due to nutritional deficiances. I am a very active person with a dog that wants walking regularly, I don't mind as the dog gets me out of the house and stops me from moping around. Anyway the 75 mils per hour blows the giving set off and with the smaller sizes when you can lock the end onto the feeding tube it clogs up with the thick feed at this faster rate and therefore I am forced to slow the rate down. This is why my doc has given me a larger tube and in all honesty since I have had it on the 15th May it is working at a rate of 70 mils per hour any faster than that and it blows off. As I have said I am seeing my dietician on 5th June to see if I can get the same nutritional value using bolus feeds. So far I

have been feeding overnight which left me free during the day to work as a Medical Secretary but I have been told that my employers cannot alow me time off during the day to the extent that I will need for a new bolus feeding regime. We'll see about that.

When my J Tube clogs up it is like furring up and over time (perhaps 5-6 weeks) the feed gradually starts to stick to the sides and clogs the tube. Can't win can I? We'll see. Keep in touch as it is so nice to have someone who has gone through what we are going through.

Dilatation succeeded and no more leakage

Hi all,

Yesterday I was too tired to post what happened, so I waited a bit.

The dilatation was very succesfull I can now eat and drink again. With a kid's tube they were able to dilatate me. The dilatations will be repeated every week now until they are able to do it on a less frequent basis. I will need about 15 dilatations, probably even more, but the doc's are all sure it's just temporary as they've never seen it be a permanent problem before. They are very very confident and as Dutch had the same trouble and needed weekly dilatations as well I am very confident now too. I am soooo relieved.

Furthermore the leakage of the J-tube has been solved. The surgeon put the tube a bit further into my intestines, removed some tissue piling out of the wound and he re-newed the J-tube stitches (my poor Romeo fainted while he did that...). Indeed this all did the trick and the tube can run full speed now without leaking a drop!

I feel fine again, though the J-tube wound is a painfull due to the happenings of yesterday. The best thing is that I feel positive and confident again, especially because the dilatations that will be done weekly now (thus meaning I won't have days of not being able to eat and drink again).

Thank you all for your support!!!

Love,

Isabella

[Guest guest]

Hi Debbie

Have just read your post and I used to use Coka Cola to unblock my J Tube until my Specialist Nurse (who knows all there is to know about feeding tubes) told me not to as it is acidic and will eat away at the lining of the J Tube. She says to only use distilled water or cooled boiled water from a kettle. My doctor told me to use Coka Cola but this nurse tells me not to. Who do I listen to?

Dilatation succeeded and no more leakage

Hi all,

Yesterday I was too tired to post what happened, so I waited a bit.

The dilatation was very succesfull I can now eat and drink again. With a kid's tube they were able to dilatate me. The dilatations will be repeated every week now until they are able to do it on a less frequent basis. I will need about 15 dilatations, probably even more, but the doc's are all sure it's just temporary as they've never seen it be a permanent problem before. They are very very confident and as Dutch had the same trouble and needed weekly dilatations as well I am very confident now too. I am soooo relieved.

Furthermore the leakage of the J-tube has been solved. The surgeon put the tube a bit further into my intestines, removed some tissue piling out of the wound and he re-newed the J-tube stitches (my poor Romeo fainted while he did that...). Indeed this all did the trick and the tube can run full speed now without leaking a drop!

I feel fine again, though the J-tube wound is a painfull due to the happenings of yesterday. The best thing is that I feel positive and confident again, especially because the dilatations that will be done weekly now (thus meaning I won't have days of not being able to eat and drink again).

Thank you all for your support!!!

Love,

Isabella

Get the name you always wanted with the new y7mail email address.

[Guest guest]

Hi ,

Here I am again...

Both things have been told to me too. The nurse told me to use cola, the other nurse started talking aboud acids etc.

There is a very simple answer: you can use the cola, after that you rinse the tube with hand warm water and no harm is done!

By the way: I'ld put the cola in the microwave for a few seconds, to get it hand warm, otherwise it'll be too much for your intestines.

Love,

Isabella

Dilatation succeeded and no more leakage

Hi all,

Yesterday I was too tired to post what happened, so I waited a bit.

The dilatation was very succesfull I can now eat and drink again. With a kid's tube they were able to dilatate me. The dilatations will be repeated every week now until they are able to do it on a less frequent basis. I will need about 15 dilatations, probably even more, but the doc's are all sure it's just temporary as they've never seen it be a permanent problem before. They are very very confident and as Dutch had the same trouble and needed weekly dilatations as well I am very confident now too. I am soooo relieved.

Furthermore the leakage of the J-tube has been solved. The surgeon put the tube a bit further into my intestines, removed some tissue piling out of the wound and he re-newed the J-tube stitches (my poor Romeo fainted while he did that...). Indeed this all did the trick and the tube can run full speed now without leaking a drop!

I feel fine again, though the J-tube wound is a painfull due to the happenings of yesterday. The best thing is that I feel positive and confident again, especially because the dilatations that will be done weekly now (thus meaning I won't have days of not being able to eat and drink again).

Thank you all for your support!!!

Love,

Isabella

Get the name you always wanted with the new y7mail email address.

[Guest guest]

wrote:

....

told me not to as it is acidic and will eat away at the lining of the J

Tube. ...

Anybody know what the lining of the J tube is made of? Seems odd that

the acid of Coke would be a problem. What is the purpose of the lining?

notan

[Guest guest]

Hi Notan

I don't know what the lining of the tybe is made of but it feels and looks like a kind of rubber and yes that is what the Specialist Nurse told me that the acid in Coke gradually eats away at the lining so to avoid using it.

Re: Re:Dilatation succeeded and no more leakage--

wrote:

.... told me not to as it is acidic and will eat away at the lining of the J Tube. ...Anybody know what the lining of the J tube is made of? Seems odd that the acid of Coke would be a problem. What is the purpose of the lining?notan