Feeding Tube and Feeling Scared!

[Rowiegirl]

Needing some positivity this evening! After many months of suffering, I’ve been diagnosed with gastroptosis (prolapsed stomach) and gastroparesis. Eating has become impossible and I’ve to be admitted to hospital to get a feeding tube. I’m so worried and anxious about it. Does anyone have any experience of having a feeding tube? If so, was it a painful experience? Did it help with symptoms? Thank you.

My little boy has gastroparesis and an unsafe swallow, he's always been tube fed. He has had a Mic-Key button in the past but currently has a balloon retained G tube and we are possibly heading towards a G-Jej. The tube itself doesn't seem to cause him any pain or discomfort, he's quite happy to lay on it (and pull on it at times) and it allows me to titrate his feed rate depending on how well he's doing on any given day, I can also vent him to allow the feed he can't deal with out of his stomach which seem to alleviate his nausea and discomfort.

Are you starting with an NG or are you having a PEG/button?

When I had my surgery (whipple for duodenal cancer) the tubes were the thing I was most scared about beforehand but i actually ended up with them in for over five weeks in hospital and they were no trouble at all, obviously I would have preferred not to need them but it wasn’t anywhere nearly as bad as I thought it would be. I ended up on the feeding ward and had TPN which is where they feed you into a vein and that was ok too.

Five years on I’m suffering with pain when I eat and I’m wondering if I have gastroparesis, what are your symptoms of that if you don’t mind me asking, I mean obviously it’s different with the stomach prolapse.

I’m having an NJ. My stomach has dropped into my pelvis and they will bypass with the NJ. I’m completely exhausted and malnourished, so something needs to be done. I’m glad your little boy is doing well on his tube.

Thanks for responding. Good to hear you managed well. My symptoms are upper abdominal pain after eating, constant burping (so debilitating), nausea and feeling completely full after a couple of mouthfuls. This led to quite severe weight loss, which may have caused my stomach to prolapse.

I’m having an NJ. My stomach has dropped into my pelvis and they will bypass with the NJ. I’m completely exhausted and malnourished, so something needs to be done. I’m glad your little boy is doing well on his tube.

My DM has a feeding tube due to an operation she had.
My suggestions are talk to the dietician about the different options if you are being offered the fortisip to put through the tube. DM was a nurse. Apparently the vegan ones are less likely to cause bowel issues like diarrhea.
Its a good idea to have someone with you when after the procedure the nurse comes to explain cleaning of the tube and turning etc. To take some notes.
Dm said it was a bit uncomfortable initially and she took it easy for a week or so.
Worth also considering clothing. The dieticians are pretty good and usually answer all your questions.

Thank you for all the good advice. Wishing your mum all the best.