Feeding tube just fell out and I don't want it replaced

My son had a gtube for 25 years. He had it taken out. When they took it out they just left the stoma open. After 25 years it wasn't going to close on its own. Every time he ate or drank , stomach acid oozed out of the stoma. He was in a tremendous amount of pain. He developed cellulitis from the skin break down. He had to be hospitalized and the stoma closed surgically from the inside and the outside.He recovered and has done fantastic. Some stomas that haven't been in long do close on their own. I'm not sure how long you've had the stoma and I don't want to frighten you. I wish someone would have told me to have the stoma closed surgically and spared my son a lot of pain. I wish you well!!

I appreciate the response. I was worried because of the weird sensations that were coming from the stoma area and nearby in my abdomen/thorax region so I first went to an urgent care and they told me I would have to go to an ER, but I didn't want to do that so I came home and called a home nurse service that was scheduled to visit in a couple days and they sent an LVN to check me. She told me it was most likely no big deal.

I got the first tube implanted a little more than two years ago, and it just fell out one morning for no particular reason after about four months. I got a new one installed immediately but then after another few months a cat accidentally pulled it out of me while jumping off my lap. So I got a third tube inserted and then I inadvertently cut the end off of it while changing the dressing, so I had to be hospitalized again to get a new one. After a few more months I had to have that one replaced because it had apparently come out of place and caused an infection and pancreatitis and coincidentally I turned out to have a kidney stone, so it was like a "perfect storm" of abdominal pain.

I am really glad that I have been able to regain the ability to chew and swallow. I hated being anchored to the feeding pump for hours a day, and the tubes kept getting infected or clogged. There were other hassles related to my hearing loss, like I could not hear the alarm sounding on the pump if it ran out of fluid or became clogged but everyone else would hear it and get annoyed at me for letting it beep. Good riddance to Kangaroo Joey and that darn hose hanging out of my belly!

I sure hope I don't have the same kind of trouble your son had with the stoma refusing to close. The LVN told me to just apply gentle pressure to the site over the next couple days to push any scar tissue back down below the surface and says I might have a small permanent bump there but it will eventually heal over.

@Itecato - Wow! You are one gutsy person! To have persevered through all that and come out the other side with the attitude you have, and a chance to be apparatus-free. More power to you! I wish you the very very best of luck and a healthy outcome. (and watch out for cats!)

@ltecato, I'm glad to hear that you called a home health service and that an LVN checked your stoma. To add to @mutter3's son's experience, I'd also like to bring @walisky @gaybinator @becsbuddy @patriciagsr and @candywocrn into this discussion.

Itecato, will the LVN be visiting you for followup?

Hi Colleen. I am not sure if another LVN is going to come by my house or not. I just had to take a Tramadol because of pain in my abdomen sort of near the stoma site, so I hope it is not a sign of trouble. It reminds me of kidney stone pain, so maybe I have another one of those. I really really don't want to go to an ER so I hope I can wait to see one of my regular doctors tomorrow. So far no symptoms besides pain.

How are you doing? Have you seen anyone yet? Colleen asked if I wanted to join this conversation but all I know about openings if that when they took out my husband's trach, it did not fill in like they expected and he ended up having it closed in the hospital. It wasn't a problem and healed well. I don't expect that my husband will get to eliminate his feeding tube but I suspect that it would require surgery to fill in as well. There were issues with his tube until doing some research, we got a gastroenterologist to switch it from a balloon type and went with a bumper button type of feeding tube . The tube clicks on for feeding and off the rest of the time. No more 4 am visits to the ER to have a replacement and I rinse out the tube after every feeding. I use a piston irrigation syringe for feeding 4 times a day and it takes about 20 minutes for each feeding.

Hi @ltecato Sounds like you have a problem that may not be a problem. @colleenyoung asked me to join the conversation with my two cents worth. The feeding tube was placed several years ago but likes to fall out. Have you let your doctor or the surgeon know? The surgeon should be told, in case there are problems. The doctor may want to do a follow-up swallow eval just to be sure you are swallowing well and not aspirating anything. You certainly don’t want a repeat of the pneumonia! Otherwise, it sounds like you are taking care on the stoma OK. Just keep it clean and dry and don’t let your clothes rub it. Will you let me know what the doctors say?

Hello everybody. I wish I could tell you something definite but I'm on a roller-coaster of ambiguity. After having a lot of pain a couple nights ago I was just fine yesterday and last night but then about noon today the discomfort started up again. I have seen the visiting LVN twice and spoke to a GI doctor on the phone. The LVN put a dressing on the stoma and told me to leave it untouched until I saw a doctor but I just had to change it anyway to see if more discharge was coming out. It isn't, so far. The LVN gave me a friendly lecture and put on a new dressing yesterday. The GI doctor does not seem to think I need to worry about anything.

The LVN said I should take acetaminophen or ibuprofen for pain instead of Tramadol because opiates give me side effects like nervousness or insomnia. I used to take ibuprofen daily but in the past few years my dysphagia has gotten to the point that I can't swallow aspirin-sized pills now without them getting stuck in my throat. Tramadol is small enough for me to swallow, but like I said, it makes me feel weird and often I can't sleep. So a few minutes ago I took an Alka Seltzer Plus and I hope it helps get rid of the pinprick pains that keep bouncing around in my abdomen and ribcage. Every once in a while the stoma sends out a microburst of burning pain, which I guess is just to be expected and does not concern me too much as long as it does not get worse.

@ltecato I’m glad you’ve spoken to the gastroenterologist about your tube/stoma. When the tube came out, it may have scratched your intestines, thus the pin prick pain. Your doctor doesn’t seem too terribly concerned, so maybe all is ok. As for the ibuprofen, some are enteric coated and very small. And there’s always applesauce. I was given my pills in applesauce for a few weeks until I could safely swallow. Best of luck

Thanks Becky!