Questions about new g-tube

[Guest guest]

Hi, I'm a 25-year-old male with SMA-2. A couple

months ago, I began having trouble swallowing solid

foods (no trouble with thin liquids) and wasn't able

to get enough nutrition, so I had to get a g-tube

urgently. Becoming accustomed with the g-tube and

making it comfortable has been difficult, and I have a

few questions for others with g-tube experience.

Some background...

It took a week to schedule appropriate placement of a

g-tube, but I was able to get it done radiographically

under a local anesthetic (no endoscope down the throat

and no general anesthetic). The doctor installed a

transgastric-jejunal tube with both gastric and

jejunal ports, so I would have the option of feeding

either way. (I discontinued use of the jejunal port

after the first week and have used the gastric port

exclusively since.) He intended to give me the

mic-key button version, but he didn't have one long

enough in stock at the time, so he used a tube version

instead. After a few weeks of recovery, I had the GJ

tube replaced with a GJ button a week ago.

Due to a weak diaphragm, my stomach is located fairly

high, so the g-tube was placed immediately below my

lowest rib. In fact, the tube seems to go up and

under my rib, not straight in. This, combined with my

being very thin, means there isn't much " padding "

around the g-tube site. There's little fat to act as

cushion, and the rib is immobile against the skin.

Even though my body frame is small, the doctor found

that he needed to order a button with a 3.5cm stoma

length. Now that it's installed, I find that even

this length feels very tight. The external bolster of

the button doesn't rest above the skin so much as

being pulled into the skin.

Worse yet, I occasionally have " spasms " that very

forcibly pull the tube/button further into my abdomen.

This squeezes the external parts of the tube/button

against my skin, especially hard and painfully against

my rib. I assume these episodes are stomach

contractions; adding a rapid bolus of food seems to

calm them down.

Questions...

How long did it take you to get comfortable with the

tube/button after getting it initially? How long does

it take after a simple replacement?

How often do you get it replaced (proactively or due

to failure)?

If you use a button, what stoma length is it? How

tightly does it rest against your skin?

Do you experience any stomach spasms/contractions that

pull the tube hard into the abdomen?

Many thanks for your information and help.

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