Hi, I'm a 34 cfer with a feeding tube that causes me constant pain. It leaks every time I eat or drink and the acid from the stomache burns my skin. I have tried everything from taking antacids, trying different size tubes, using gauze, etc., and it still hurts. I don't want to have it removed because it really helps when I am sick. I just don't think I can take it anymore. Anyone have any suggestions or tricks that might help relieve the burning and raw skin around the tube? Thanks for your feedback. Kim
Feeding Tube
- Thread starter anonymous
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MullMuzzler
New member
Hi kim.....i am a 22 year old male with CF and i was in the same boat you are in. i have had a feeding tube for 15 years.... its a J tube. i had the same problems you are having, mine would come and go all the time but its been pretty good the last year or so. It does cause alot of anger/headaches but when it comes down to it my feeding tube saved my life. mine skin around my tube is raw and red too.....i have tried EVERYTHING!!!! but having years and years of this.....thats just how it is....and the burning/pain is still there a little but i guess im just used to it.
HI kim and jim (ha it ryhmes
)wish I could be of help to you both, I had my feeding tube inserted 6 months before my transplant, and I had nothing but problems with it, I didnt want to get it taken out, because waiting for lungs and being very thin and struggling I fought for the 6 months to keep it. eventually it got to the point where I was on pain killers constantly and the area around was raw as hell. Things got so bad for me that not only was the pain/burn so bad, but I couldnt even tolerate food going into my stomach because of pressure and more pain and I was losing more weight(below 38kgs). SO I made the decision to risk having it taken out.One thing you might be able to try is a barrier cream, or drying it with a hair dryer to try and give your skin a break, I use to sun mine, and it helped a little, but not enough<img src="i/expressions/face-icon-small-sad.gif" border="0">funny enough when I was experiencing all this, my Doctors made out I was the only one they had heard of that had this happen. YA right!I did nasal gastric feeds for 2 years prior to tube feeding, but because of servere coughing, I use to throw my tube up more times then it was done, but I was going to go back to nasal gastric if I had of needed it. Nasal feeds and oxygen are hard to tolerate<img src="i/expressions/face-icon-small-smile.gif" border="0">) but I know ppl who do ithave you tried NG feeds?? its not for everyone I know, but it could be another option, usually getting a tube in is your last resort. but it may be an option.But I do feel for ya, its pretty annoying.good luck with it, and hopefully you dont get to the point I was at and get it removed because things get too bad.Take careTracy cf/tx2002ps. if you do NG feeds, if you can get vygon tubing, its prediatric feeding tubes, much much softer
)wish I could be of help to you both, I had my feeding tube inserted 6 months before my transplant, and I had nothing but problems with it, I didnt want to get it taken out, because waiting for lungs and being very thin and struggling I fought for the 6 months to keep it. eventually it got to the point where I was on pain killers constantly and the area around was raw as hell. Things got so bad for me that not only was the pain/burn so bad, but I couldnt even tolerate food going into my stomach because of pressure and more pain and I was losing more weight(below 38kgs). SO I made the decision to risk having it taken out.One thing you might be able to try is a barrier cream, or drying it with a hair dryer to try and give your skin a break, I use to sun mine, and it helped a little, but not enough<img src="i/expressions/face-icon-small-sad.gif" border="0">funny enough when I was experiencing all this, my Doctors made out I was the only one they had heard of that had this happen. YA right!I did nasal gastric feeds for 2 years prior to tube feeding, but because of servere coughing, I use to throw my tube up more times then it was done, but I was going to go back to nasal gastric if I had of needed it. Nasal feeds and oxygen are hard to tolerate<img src="i/expressions/face-icon-small-smile.gif" border="0">) but I know ppl who do ithave you tried NG feeds?? its not for everyone I know, but it could be another option, usually getting a tube in is your last resort. but it may be an option.But I do feel for ya, its pretty annoying.good luck with it, and hopefully you dont get to the point I was at and get it removed because things get too bad.Take careTracy cf/tx2002ps. if you do NG feeds, if you can get vygon tubing, its prediatric feeding tubes, much much softerHiI'm from London and have had my Mic-Key tube for about 13 years or so. Have never really had many problems with it (sorry!) and have always been surprised when docs see it and say it's really neat looking (as in tidy) as if loads of them are a total mess. Never knew lots of people had such trouble. The one time it did get really red raw and sore for a few weeks/months (sorry can't remember how long, it was a couple of years ago) I was given a powder to apply directly to the skin around it, and that cleared it up. I can't remember what it was called, but may have kept it for reference so can always look at home tonight if you like?As you say you've tried changing sizes etc I'm not really sure what else to suggest. Only other thing it might be is thrush. I know that it can affect those types of areas (little nooks and crannies etc), so maybe try a thrush cream (speak to your docs first though). Also, it's probably obvious and also may be hard to do if it is so sore for you, but I dry mine every time it is wet from a bath, shower, swimming or whatever.
I recently used the liquid skin protectant that was in my dressing changing kit. It worked extremely well. It burns when you first put it on, but it it provides a clear seal on the raw wound. The name of the company is Aplicare, however you have to order it through your local pharmacy or drug company. It comes in both swab sticks and pads. The pads are less expensive an easier for pharmacies to acquire in small units. I'm not saying that this cures it, but it sure helps.
NoDayButToday
New member
Dressing kit? For your feeding tube? What sort of dressing do you have to wear? I have a Bard Button which doesn't require any kind of dressing. I was just curious because I hadn't heard of needing a dressing for a feeding tube. Thanks for the tip though- it sounds like it helps! <img src="i/expressions/face-icon-small-smile.gif" border="0">
my daughters use to get sore around her tube and when she was in the hospital we had a nurse who made a paste of desitin diaper rash ointment and malox heart burn antacid , it worked great her skin looks good no more reddness or burning we still use the mix if she starts getting sore around her tube .
I'm right there with you. I just got maried July 3rd, and my husband is nothing but supportive- but the feeding tube sounds like absolutely no fun to me- and I have been advised to get one- IM on the transplant list, but I just DONT WANT ONE!!!. I'm scared and stubborn!!! YUCK. I'm going to hold off as long as I can.....
well i can honestly say.... g tubes are no fun.....i had one for about 8 years but recently had it removed b/c i finally gained enough weigh by myself and maintained it long enough to have it removed. thank god!!! but i'am married too but hubby was very supportive and helped me get my feedings together everynight. but i'am sooo glad i dont have it anymore. but when i did have it it would get very irritated too my dc. gave me some nistatin cream not sure if i spelled it right!! lol but it helped it cleared it up. but theres only 1 thing i hate about having it removed...i have a lil hole in my stomache and to me it looks bad...but hubby tells me its not that noticable...yea right!! lol but anyway i just wanted to relpy to this b/c i have been in the same mess....good luck to u all!!!!!!!!!!!!1
Hello,
My stoma is so irritated since i had my tube changed. i am hoping it will get better but it is hard. I had it changed from a French 12 to a 14 about a week ago and it burns all the time and bleeds still and leaks and when i hook the "key" tube in, it seems too heavy and pulls like crazy in the button. The button is made of a completely non-stick material too, so i can't even tape it to hold it still... any suggestions on comfort during healing would be great.
Jewels
My stoma is so irritated since i had my tube changed. i am hoping it will get better but it is hard. I had it changed from a French 12 to a 14 about a week ago and it burns all the time and bleeds still and leaks and when i hook the "key" tube in, it seems too heavy and pulls like crazy in the button. The button is made of a completely non-stick material too, so i can't even tape it to hold it still... any suggestions on comfort during healing would be great.
Jewels
Hey I was just wondering...
my brother is loosing and has lost ALOT of weight. He's 20 and is 6' tall and weighs about 104 lbs. (when he was healthier his weight was always around 130) This is the skinniest I have ever seen him. So far our doctor hasnt said anything to him about getting one...but I was just wondering how do you know when to get a feeding tube put in?
Thanks!
my brother is loosing and has lost ALOT of weight. He's 20 and is 6' tall and weighs about 104 lbs. (when he was healthier his weight was always around 130) This is the skinniest I have ever seen him. So far our doctor hasnt said anything to him about getting one...but I was just wondering how do you know when to get a feeding tube put in?
Thanks!
I decided to get a feeding tube because I was so tired of trying to gain weight. You can only drink so many shakes and consume so many calories in a day. I wanted to make things easier by using my tube at night. I would get almost 1000 calories as I slept and it really didn't bother me at all until the pain from the rawness around the tube. It actually got so bad I had the tube removed. (My weight has been stable for over a year). I would have your doctor talk to your brother about the tube. I am 5'2" and get concerned when my weight is under 105. It's so important to have a little extra weight on just in case you get sick. Weight drops super fast when you have an infection. Best wishes, Kim
My son is 3 and had a GJ tube for 6 months then was switched to a G tube ( mikey button), he was very sore and red around the stoma. When he was in the hospital a nurse put mylanta on it and it worked wonders. She explained that it helped coat the sore areas, and gave them a chance to heal. I think the leaking of stomach fluids/acid was the cause of it. Hope this helps.