New PEG tube

[Qtcat]

Hello,

I had a PEG tube placed on Friday, I’m just looking for any tips and experience you would share.

Thank you,

Liz

[MikeRD]

Hi, I have had a peg tube fitted for 17 months, they can be a bit inconvenient while trying to get to sleep. I found by getting a V shaped pillow really helped. Just remember to keep your disc clean and use a good cream underneath it, Flaminal Hydro is a good cream. I hope everything goes well for you in the future.

Michael

[Qtcat in reply to MikeRD]

Thank you. I do have trouble sleeping now too 😔 I had a tube for a year in 2017 and now again but don’t remember the specifics. I’ve also had a bit of oozing blood when I move about that I don’t recall before but they went through the old scar as well. Thank you for your reply and stay well.

[Aurora12]

Hi Liz,

Hoping you're managing your PEG okay? And apologies if the stuff below doesn't apply to you (

I've no experience with a PEG - but IF it's similar to managing an NG tube? (Naso-Gastric - i.e. down through nose inro stomach) - i.e. you're responsble for flushing the tube thro?.....

My one failing was that once, when I'd finished my kilo of Nutrison, I was on the phone for an hour BEFORE flushing the tube thro' with water (yes, entirely my own fault - just chatting!!!) Big mistake - should do it straight afterwards. Needless to say, on my next feed, nothing would go down - it was blocked. Hospital suggested I go to GP's, who tried Creon (tiny balls of ??) - but that didn't clear it either, so back to the hospital to remove it and have a new tube fitted!

All the water/ liquid food/ water sequence - did make me feel bloated - but, hey, it gave me much-needed nutrition!

Not sure if same for you - since your food will go directly into your stomach - but I had to test the pH levels of my gastric juices before feeding - with PH Indicator strips. Where it was out of kilter, I was advised that sipping blackcurrant squash would bring it back to correct level. And it did, though sometimes not 'til the 2nd or 3rd attempt afterwards.

The odd time, my tube had gone further down into the duodenum, which was usually the cause.

Currently, whilst you may not be out very often, you'll still have medical appts. - what made it so much easier for me was that my Dietician gave me a RUCKSACK, as well as a stand with the pump for the food. (tube went thro' hole in rucksack) - so, I was able to do chores around the house while feeding during the day, with rucksack on my back.

I found day feed SO much easier because the whirring of the pump stopped me sleeping at night. They started me off at slow speed (12 hr. feed) but I was gradually able to speed it up to 8 hrs.

N.B. I had NG tube for 5.5 mths. The first few days AFTER that, when returning to feeding by mouth, unfortunately, most of the mushy food came back up whilst my body got used to it again - it was a gradual scenario in getting back to normal sized meals.

I'd lost 2 stone at the time - have seen put on 3!

You will get through it all - it's a phase, hopefully - Good Luck!

[Qtcat in reply to Aurora12]

Thank you for your reply 😊 my tube is permanent 😔 but I’m ok with that. I can’t wait for it to heal. I don’t use a pump, I bolus so far. I can’t wait to gain some weight and feel better.

[Aurora12 in reply to Qtcat]

I am sorry, Liz - apologies for my ignorance. Best wishes x

[Qtcat in reply to Aurora12]

No worries, you’re info was helpful. Thank you for sharing your experience with me ❤️

[Mauser1905]

Liz,

Hope you are improving your weight with bolus feed.

Permanent peg tube, appreciate if you can share your surgery details, if you happy. Context matters to give feedback. Most survivors on this forum had had some form of oesophageal cancer and the oesophagectomy (in again most amongst these cases) was a result of that. Certain minimal cases due to non cancer oesophagectomy's. Like yours I am assuming.

If your surgery involved had colon interpositioned near the top end of oesophagus then are you nil by mouth for any intake? Question because you said permanent peg tube. Again if you dont mind sharing your specific case here.

You have had g tube earlier so its not new for you, in principal; for example social implications etc.

Fatigue is a issue in the permanent feeding longer term. I see you are similar age to mine and the physical demands to go about day to day life are very much exhausting.

Your bolus feeding is not intermittent with pump over night etc. Yours is permanent and is meant to mimic real life feeding. Whereas most Oesophagectomy recoveries have temporary feeding tubes, predominantly j tubes.

If your sphincter is intact you are not required to sleep inclined. Assuming here that only top oesophagus replaced with colon and stomach and bottom oesophagus undisturbed.

Good luck.

[Qtcat in reply to Mauser1905]

Hello,

I was supposed to have an esophagectomy with colon interposition, however I have a very rare condition called Lymphocytic esophagitis and the Dr’s were afraid I’d never recover more function than I now manage. I have an esophageal web at the junction of my throat and esophagus followed by a severe stricture and then lymphocytic esophagitis all the way down to my stomach. I have been dilated every 3 weeks with minimal results. I’ve only ever gotten as far as 18mm and closes significantly within the 3 weeks. I have to purée my food and it’s equivalent to pouring it into a funnel, it backs up and will spill into my airway. This is the reason for a permanent PEG tube. I did have one previously 3 years ago but don’t remember much from that time. I do have memory issues from repeated anesthesia. I do bolus feeds 5 times a day with free water every four hours. I have been out of work since February due to my fatigue and malnutrition so I take it easy at home , I am fortunate to have a husband that doesn’t mind picking up the slack. I still have to remain a bit of an incline when sleeping but do so with pillows. I’m only 90lbs as of now but can gain 30lbs more before switching to a maintenance feed instead of weight gain amount. I can have purée by mouth for pleasure but the tube is my nutrition. I hope I answered all your questions and thank you for your response 😊