Old 01-10-2018, 06:36 PM #1 (permalink)
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Default When simple stomach tube placement goes bad

I'll keep this brief for those with reading challenges, feel free to ask questions in the comments if you like.

I went into hospital on Dec 18 for a simple PEG placement.
The doctor aborted the procedure as the light was not showing through my stomach, giving him a safe "landing site".

Agreed with my respirologist (my PCP) that as I was already admitted to hospital that we would do a RIG next day.

This was incredibly painful but seemed to go well and I was discharged on Xmas Eve.

Within a few hours, I was so much pain I was rushed back to ER, so much pain I couldn't form words, only wail. The anchor for the tube had let loose.

Surgery to double anchor the tube followed. By the 26th, I was still in some pain and Dr. L (my PCP) pushed for surgery.

This time, the surgeon (a stomach specialist) went in to discover I was riddled with serious infection. He pulled out the tube completely.

I got home yesterday after what was the most hellish, miserable experience in my life. Pain went, stomach healed quickly, but I began aspirating (very strong swallow and talking, this is new) leading to panic attacks etc.

Right now, I am comfortable, had a lot of good people looking after me and advocating for ALS rights. I didn't need the tube right now so that's for later.

Wanted to share my unusual experience-knowledge is power.

xo
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Old 01-10-2018, 07:16 PM #2 (permalink)
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Default Re: When simple stomach tube placement goes bad

Ouch! That sounds awful. I’m so glad you’re better now.
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Old 01-11-2018, 07:53 AM #3 (permalink)
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Default Re: When simple stomach tube placement goes bad

I'm so sorry, that sounds awful. You poor thing. What a nightmare. I had a lot of pain after my g-tube was placed, but no complications.
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Old 01-11-2018, 08:00 AM #4 (permalink)
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Default Re: When simple stomach tube placement goes bad

That certainly sounds like something that should not have ever happened. Possibly an incompetent medical team.
Al
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Old 01-11-2018, 09:54 AM #5 (permalink)
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Default Re: When simple stomach tube placement goes bad

Geeze Liz, that sounds horrible!
I'm so glad you are ok.

Angie
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Old 01-11-2018, 11:48 AM #6 (permalink)
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Default Re: When simple stomach tube placement goes bad

I'm very sorry to hear about your ordeal, Liz. It does suggest that a J or G-J tube be considered when any future procedure is planned.

Best,
Laurie
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Old 01-11-2018, 02:40 PM #7 (permalink)
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Default Re: When simple stomach tube placement goes bad

Oh, that sounds like an absolutely awful experience. I am so glad you are home and able to recover from what sounds like a terrible and stressful few weeks.
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Old 01-14-2018, 04:34 PM #8 (permalink)
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Default Re: When simple stomach tube placement goes bad

Thank you for all the good wishes, I'm slowly regaining some strength.
Laurie, the surgeon who eventually removed the tube did assure me that j-tubes were a possibility, in case I feared there were no other options.
It was horrible, but I was lucky in so many ways. XO
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Old 01-14-2018, 06:22 PM #9 (permalink)
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Default Re: When simple stomach tube placement goes bad

wow so frightening, let alone painful!

I'm so glad you are healing now, and yes J-tubes are very commonly used and may be your best option when you are ready.
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Old 01-15-2018, 12:46 PM #10 (permalink)
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Default Re: When simple stomach tube placement goes bad

Had a RIG put in April and within 24 hours of getting home I was rushed back with pulmonary embolisms and pneumonia . Then last month it fell out and was too painful to get back in.
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