PEG Tubes: Lifeline not a Life sentence.
Tube transitioning and the oral eating fairy.
Tube Transitioning
I am a long way from my days of feeding through and with a PEG tube.
Still, it is a time I recall with maddening clarity and how I managed it and the now weird little second belly button is a daily reminder of that part of my healing journey.
The closure plug came off mine at one point and the Monty Python scene that followed was (if it wasn’t so serious) actually funny. I threatened those in the “area” with fixing it myself via a local hardware, upon which I was told I was using it too much. My PEG Tube was not only for medical nutrition but also water & medication.
Yep, if you can believe that.
I am not sure that the level of anxiety I was experiencing was fully appreciated and clearly I was on the “too hard bus”, next.
If you look up PEG tube, Peg transitioning or any combination of “how to transition from tube feeding to mouth” you will find a plethora of information for babies and children but not so much for those of us who still wanting to share a cold beer or a shockingly chilled riesling with friends as adults.
I know there are some of you out there using a PEG tube as I write this, others who did not have the need for one and others like me, who did and now are transitioned to oral eating.
The run down seems to go like this -
Talk to your doctor / dietitian, speech pathologist - make sure its safe
Increase oral intake over tube feeds
Take it slowly and tell your “person” if you experience difficulty (that’s a whole post on its own)
Keep a log and be patient
All good advice - pretty scant on actual help but the sentiment is there - I guess.
It has raised its plastic stopper head again because I have been blitzing food of late, mostly because I can feel I am not eating enough but also I am noticing my swallow is hit and miss and I don’t know what to do about it.
I guess I’ll just work it out as I wriggle into my now size 10 & dropping jeans.
I am a qualified chef and love nothing more than playing around with food items to see what I can create. I found the PEG tube transition process really overwhelming and I continue to write about it because “Oh how soon we forget” ! and just right now I feel as though I could chug down a medical nutrition bottle just to add the calories I can’t get in with any type of food. I am straining my strawberry pulp as the seeds are setting me off on a coughing fit as we speak type eating.
Some of you write to me and lament the fact you are not eating orally, and I can’t advise you medically.
I can only tell you what I did and how I managed and do manage now some nearly 6 years out from treatment.
If I waited for the eating orally fairy to drop on in and show me the way, I’d still be pouring my meals into a plastic tube 3 times a day.
It has spurred me on to write something that is ever green and useful for the adults amongst us.
Something that can be the SAS Survival Handbook, the Swiss Army Knife as it were for living your best life after this very sucky disease and treatment process.
PEG Tubes get a bad rap and in defence of PEG Tubes and to be fair, it saved my life.
Did I want it ? no
Did I hate it ? yes
Did it hurt? sometimes and mostly when trying to roll over in bed
Was it easy to master? I am going to say no on this as mine fell out 3 times, the third time I gave up and took my chances.
PEG tube stigma is unfounded and it, along with its counter partner (medical nutrition) are part of the process and they can and often do go together like Jatz and French Onion Dip, worth while and definitely a good accompaniment to a shockingly cold glass of riesling if that’s still your do able thing.
I think it’s kind of crazy to adamantly refuse a PEG tube, I understand why you would, don’t get me wrong, but they are a necessary evil on this HNC journey for some of us.
They literally keep us alive, perhaps for life.
Keep an eye out for the tell all manual / guide I am developing.
Subscribers will get the first heads up and paid subscribers a nice little bonus surprise to go along with it.
Eat Well.
