I'm interested in hearing from people who have a feeding tube. My tubes leaks all the time and the skin around often looks red from the acid in my stomache. It is really annoying. I currently have a 2.5 cm 15 french low profile GI tube. Anyone have a smaller one or experience with this?
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Feeding Tube
- Thread starter anonymous
- Start date
HiI've had a tube for about 12 years or so (am 26 now). It took me ages to come to terms with the fact that I needed it, and when I was a teenager I went through a phase of really wanting rid of it, even talking to my dietician and consultant to see if they'd let me have it removed. They wouldn't (well I guess it was ultimately my decision, but they were very against it) and I am so glad that they stuck to their guns as I do still struggle with my wieght and would be lost without it sometimes. I guess my main reason for wanting it out was that I thought it would be one more thing that a potential boyfriend may be put off by - along with everything else that goes with cf. However, I've got a brilliant boyfriend now who actively encourages me to have my feeds to stay as well as poss.I do get the occasional annoyance with it, such as the sore red skin, but it doesn't leak and apart from sticking out under my clothes slightly it doesn't worry me most of the time. I have a 3.5 14 French Mic-key. It sounds like maybe you could do with being measured to make sure you have the right size in if it's causing you problems. When my dietician saw mine recently she thought it looked tight so they whipped it out and took a measurement - turned out it was ok after all and I think it was just looking tight cos I was hungry and it was doing that wierd thing where it gets sucked into your belly a bit when you're starving!Anyway, defo see if they can measure the hole to check you've got the right size. Also, when mine was last really red and sore I was given this stuff that was like talc, but medicated (sorry I can't remember the name) and it seemed to do the trick in clearing it up.
It's for if you can't maintain you're weight, then you can have high calorie 'feed' overnight - it's like liquid food, kind of like milkshake is the best way to describe it! There's a choice of either passing a tube up your nose and swallowing it down your throat, which I tried when it was first suggested to me to have feeds, but couldn't swallow the tube, or you can have a small hole cut into your stomach and a permanent tube fitted, called a gastrostomy. It has an access valve that sits against your skin on the outside that you attach the feed to, and inside your stomach it's held in by a balloon filled with water, which usually pops after a few months and then you (or my mum in my case) just pull it out and fit a new tube and fill the balloon again. It's a bit of a pain as even though once the skin and muscle around the hole heals (a bit like a piercing I suppose) it still sticks out slightly so you can see it through clothes depending on what clothes you wear and I choose not to wear bikini's and stuff on the beach as I don't want people staring at me, but that's personal choice. I usually have a feed about 5 nights a week, in addition to eating normally in the daytime, but I guess it varies from person to person depending on how many calories they manage to get down them in the day.I've tried just eating enough in the daytime, but even with high cal milkshakes etc, it's not enough to sustain my weight, and even with the feeds, if I have a bad infection and lose my appetite, the feeds don't even sustain my weight and I still lose weight. That's why even if I'm a good weight for me I still feed at night, as then when I'm more sick it's not as big an impact when I lose a bit.
Being a nurse I see alot of feeding tubes. If they are reddened and have little red bumps, or if has a "different oder" then it may be a fungal infection that is the cause. Call your doc and ask if you can have a script for nystatin powder or ointment or what he prefers. To apply the Nystatin powder first clean the area around the tube with some water and apply some nystatin to a clean piece of gauze( to minize the amt that gets into the air) then to the affected area. You will do this 4 times a day for 14 days. Make sure you do the treatment for the exact amt of days that the doc has prescribed. When you are all healed you can apply some A+D ointment (ask the doc which one he prefers) around the site to help protect the skin. If you are leaking around your tube please call your doc and let him know. You may need a larger tube. Good Luck ~ I wish you the best!
B
Beaz
Guest
Try Stomahesive powder, made by ConvaTec. It's worked well on my son's g-tube site for four years.
my little 8 year old sister has a feeding tube in her stomach andi now have to do a project on cystic fibrosis for school i do not knowifshe has it but i feel bad she never likes to tell anyone and cries all the time and thinks that everybody wouldmake in fun of her i cry when she does if you want to talk more i have a screen name it is woonyshortie18 <img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/present.gif" border="0"><img src="i/expressions/face-icon-small-frown.gif" border="0"><img src="i/expressions/devil.gif" border="0"><img src="i/expressions/face-icon-small-blush.gif" border="0"><img src="i/expressions/face-icon-small-disgusted.gif" border="0">
Hi -- My 7 year old little girl got a feeding tube last September. Yes, it was extremely tramatic!! But, she has gained 20 pounds in one year and she looks GREAT!!! As hard as it is to deal with emotionally, it is a wonderful substitute for poor weight gain. Around her button does get sore and red and oozy, usually a warm shower will clear that up.
NoDayButToday
New member
I recently got a feeding tube "button" and just had a few questions about what you guys do.1) For those of you on night feeds, have you found any other position to sleep in other than your back? I find this very uncomfortable, but it seems to be the only way to sleep without kinking the tube or causing leakage2) How often do you all replace your right angle tube? I've heard everything from once a month to every 3 days. Currently I've been doing it once a week.Just some questions from a newcomer to this whole feeding tube thing. Thanks!
I have a mic-key button and it doesnt leak, occasionaly gets red around the site but that also clears up with a warm shower and clean!I change the button whenever i feel the need, usually every couple of months.Anyone know of anything beside that mic-kley that can be put in the hole as a placeholder when not using the mic-key?as it does stick out a bit and it would be nice if i could have it...not sticking out some times.