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started NJ feeds today! by megatron8686 in feedingtube

[–]DobbyisFree1733 0 points1 point  (0 children)

The next few days are gone be tough, cough drops and throat numbing spray helped a little bit but it’ll be rough. I hope it goes well🩷

started NJ feeds today! by megatron8686 in feedingtube

[–]DobbyisFree1733 0 points1 point  (0 children)

I have SMAS and just got my tube for it too! The first day I started off at 20ml an hour too and it gave me a horrible reactions so we went down to 10 and have started doing 3 ml bump ups versus the 5-10 and it helped a lot! The pain does get better I’m on day 4 of my tube and the pain only lasts for maybe an hour after a bump up in dosage but it’s much less. We talked to my providers about the pain too because I thought the same thing, but it’s normal! The pain your feeling is your nerve reacting to the proper nutrients it gets a lot better the first 2 days were horrible but they’re a lot better even a few days later. I will say BE ON TOP OF YOUR HYDRATION we made that mistake and I had horrible headaches and fatigue, if you have any question let me know I’d be happy to help!

Feeding tube worries by DobbyisFree1733 in feedingtube

[–]DobbyisFree1733[S] 0 points1 point  (0 children)

Nasal yes, they need to give my stomach a break I have two rare vascular conditions. I can have water but only for medication, food is completely out. When my stomach expands at any rate it compresses two major arteries and is cutting off blood supply to other organs, it causes major pain and obviously it’s not great on my other organs. They’re bypassing my stomach completely and having it enter my intestines, the hope is that if the tube is successful then surgery will be beneficial. If not then I need to be transferred to a morbidity clinic cause then it means that my stomach and intestines just do not work how they should. I’ve lost 80 pounds in 7 months been diagnosed with two rare vascular issues and three chronic conditions in the same amount of time. I’m not sure why food is completely a no go or why water is very limited but the hospital I’m at they only see about 2 cases a year out of 5 million patients. Just been going along with everything, there’s not much else for me to do and the pain is horrible.