G-Tube Button options

theLostMiler · May 22, 2011

If anyone who follows me and/or g-tube posts you know I am continuosly battling mine.

I feel like mine is constantly leaking and so it is always always irritated from the stomach acid. My doctor told me to "take more prevacid" as a solution. I am not super happy with that b/c obviously he has never had a g-tube where the tabs just increase the irritiation.

Anyways, I searched on here and saw that I have the "low-profile" AMF button I think, the "mini-ones". I see the Mic-Key is a lot bigger and the Bard you have to replace at the hospital b/c its not a ballon. I just want some opionions on amount of leakage... and comfortability.
My home health company is trying to get me a longer button to see if that will help but its been about two months since they've been working on it since its not in their supply stock at all.
I want the longer one, but at the same time am afraid of leakage. I have my balloon filled up between the recommended and the minimum volumes and its soo tight now I know it is rubbing on the inside and then the tabs are so close to the skin that it rubs the already tender and irritated skin.
I want so badly to take this out but it was soo painful getting it in, and I know it will be beneficial for anything transplant related but I am just soo at my wits end w/ this thing... why does it leak so much?
I have used desitin in the past and all it does it make the site slippery and "moist" so then I get granulation tissue... I have tried gauze, no gauze and nothing seems to matter. It will help for a week or two and then its back to being a pain.

theLostMiler · May 22, 2011

If anyone who follows me and/or g-tube posts you know I am continuosly battling mine.

I feel like mine is constantly leaking and so it is always always irritated from the stomach acid. My doctor told me to "take more prevacid" as a solution. I am not super happy with that b/c obviously he has never had a g-tube where the tabs just increase the irritiation.

Anyways, I searched on here and saw that I have the "low-profile" AMF button I think, the "mini-ones". I see the Mic-Key is a lot bigger and the Bard you have to replace at the hospital b/c its not a ballon. I just want some opionions on amount of leakage... and comfortability.
My home health company is trying to get me a longer button to see if that will help but its been about two months since they've been working on it since its not in their supply stock at all.
I want the longer one, but at the same time am afraid of leakage. I have my balloon filled up between the recommended and the minimum volumes and its soo tight now I know it is rubbing on the inside and then the tabs are so close to the skin that it rubs the already tender and irritated skin.
I want so badly to take this out but it was soo painful getting it in, and I know it will be beneficial for anything transplant related but I am just soo at my wits end w/ this thing... why does it leak so much?
I have used desitin in the past and all it does it make the site slippery and "moist" so then I get granulation tissue... I have tried gauze, no gauze and nothing seems to matter. It will help for a week or two and then its back to being a pain.

theLostMiler · May 22, 2011

If anyone who follows me and/or g-tube posts you know I am continuosly battling mine.

I feel like mine is constantly leaking and so it is always always irritated from the stomach acid. My doctor told me to "take more prevacid" as a solution. I am not super happy with that b/c obviously he has never had a g-tube where the tabs just increase the irritiation.

Anyways, I searched on here and saw that I have the "low-profile" AMF button I think, the "mini-ones". I see the Mic-Key is a lot bigger and the Bard you have to replace at the hospital b/c its not a ballon. I just want some opionions on amount of leakage... and comfortability.
My home health company is trying to get me a longer button to see if that will help but its been about two months since they've been working on it since its not in their supply stock at all.
I want the longer one, but at the same time am afraid of leakage. I have my balloon filled up between the recommended and the minimum volumes and its soo tight now I know it is rubbing on the inside and then the tabs are so close to the skin that it rubs the already tender and irritated skin.
I want so badly to take this out but it was soo painful getting it in, and I know it will be beneficial for anything transplant related but I am just soo at my wits end w/ this thing... why does it leak so much?
I have used desitin in the past and all it does it make the site slippery and "moist" so then I get granulation tissue... I have tried gauze, no gauze and nothing seems to matter. It will help for a week or two and then its back to being a pain.

hmw · May 22, 2011

If adding the extra water is making the button so uncomfortably tight, I do think it's worth a try a longer one. Emily's first one was 1.2cm and was SO tight against her skin and nearly impossible to turn, her current one is 1.7cm and a much better fit. Can you try a different supply company? Can your surgeon work with you to order a different size? The fuller balloon really makes a huge difference in limiting leaking and I'd really like to see what kind of results you get with a proper fit+full balloon.

Another thought- a fellow mom I know whose daughter had the MicKey for a long time just switched to the AMT due to the size issue (otherwise, as far as I know her child was doing fine with the MicKey.) Her dr told her she was exchanging one size issue for another- that the AMT had a lower profile but was longer on the outside. So if those side 'tabs' are bothersome, you may do better with the MicKey despite the cosmetic issue of the higher profile.

Bard does need to be replaced in-office, but it's my understanding that they last a LOT longer than a balloon-style gtube, so it may well be worth it. Emily's first was a Bard-compatible with a non-balloon 'mushroom' on the inside and we would have kept it had she not developed an infection and if it fit her right- it had the flattest profile of any tube I've ever seen photos of. It was essentially invisible under clothing.

hmw · May 22, 2011

If adding the extra water is making the button so uncomfortably tight, I do think it's worth a try a longer one. Emily's first one was 1.2cm and was SO tight against her skin and nearly impossible to turn, her current one is 1.7cm and a much better fit. Can you try a different supply company? Can your surgeon work with you to order a different size? The fuller balloon really makes a huge difference in limiting leaking and I'd really like to see what kind of results you get with a proper fit+full balloon.

Another thought- a fellow mom I know whose daughter had the MicKey for a long time just switched to the AMT due to the size issue (otherwise, as far as I know her child was doing fine with the MicKey.) Her dr told her she was exchanging one size issue for another- that the AMT had a lower profile but was longer on the outside. So if those side 'tabs' are bothersome, you may do better with the MicKey despite the cosmetic issue of the higher profile.

Bard does need to be replaced in-office, but it's my understanding that they last a LOT longer than a balloon-style gtube, so it may well be worth it. Emily's first was a Bard-compatible with a non-balloon 'mushroom' on the inside and we would have kept it had she not developed an infection and if it fit her right- it had the flattest profile of any tube I've ever seen photos of. It was essentially invisible under clothing.

hmw · May 22, 2011

If adding the extra water is making the button so uncomfortably tight, I do think it's worth a try a longer one. Emily's first one was 1.2cm and was SO tight against her skin and nearly impossible to turn, her current one is 1.7cm and a much better fit. Can you try a different supply company? Can your surgeon work with you to order a different size? The fuller balloon really makes a huge difference in limiting leaking and I'd really like to see what kind of results you get with a proper fit+full balloon.
 
 Another thought- a fellow mom I know whose daughter had the MicKey for a long time just switched to the AMT due to the size issue (otherwise, as far as I know her child was doing fine with the MicKey.) Her dr told her she was exchanging one size issue for another- that the AMT had a lower profile but was longer on the outside. So if those side 'tabs' are bothersome, you may do better with the MicKey despite the cosmetic issue of the higher profile.
 
 Bard does need to be replaced in-office, but it's my understanding that they last a LOT longer than a balloon-style gtube, so it may well be worth it. Emily's first was a Bard-compatible with a non-balloon 'mushroom' on the inside and we would have kept it had she not developed an infection and if it fit her right- it had the flattest profile of any tube I've ever seen photos of. It was essentially invisible under clothing.

JennyCoulon · May 22, 2011

My son went to the Mini button after the Bard was taken out. He has a 18 french, 3.5. It works really well for him. It is longer so it doesn't fit so tight to his skin and he doesn't seem to have any issues with it. Have you checked with the surgeon's office who placed it for suggestions or maybe check with the Pulmonary clinic on their suggestions.

JennyCoulon · May 22, 2011

My son went to the Mini button after the Bard was taken out. He has a 18 french, 3.5. It works really well for him. It is longer so it doesn't fit so tight to his skin and he doesn't seem to have any issues with it. Have you checked with the surgeon's office who placed it for suggestions or maybe check with the Pulmonary clinic on their suggestions.

JennyCoulon · May 22, 2011

My son went to the Mini button after the Bard was taken out. He has a 18 french, 3.5. It works really well for him. It is longer so it doesn't fit so tight to his skin and he doesn't seem to have any issues with it. Have you checked with the surgeon's office who placed it for suggestions or maybe check with the Pulmonary clinic on their suggestions.

Ldude916 · May 22, 2011

I didn't even realize there were different 'button' options besides the Mic-key. Can anyone tell me their experience with the AMT button?
From reading the brochure online, it sounds like I might have less leakage and a low profile is always good. I do have some tissue granulation that has been the same size since I got the tube placed...it hasn't gotten worse. http://www.amtinnovation.com/pdf/MiniONE_IncreaseComfort.pdf and http://www.amtinnovation.com/granulation.html

Ldude916 · May 22, 2011

I didn't even realize there were different 'button' options besides the Mic-key. Can anyone tell me their experience with the AMT button?
From reading the brochure online, it sounds like I might have less leakage and a low profile is always good. I do have some tissue granulation that has been the same size since I got the tube placed...it hasn't gotten worse. http://www.amtinnovation.com/pdf/MiniONE_IncreaseComfort.pdf and http://www.amtinnovation.com/granulation.html

Ldude916 · May 22, 2011

I didn't even realize there were different 'button' options besides the Mic-key. Can anyone tell me their experience with the AMT button?
From reading the brochure online, it sounds like I might have less leakage and a low profile is always good. I do have some tissue granulation that has been the same size since I got the tube placed...it hasn't gotten worse. http://www.amtinnovation.com/pdf/MiniONE_IncreaseComfort.pdf and http://www.amtinnovation.com/granulation.html

theLostMiler · May 22, 2011

I have the AMT, its nice b/c it is really low profile but as you can see, I have leaking issues.

My situation is so screwed up haha. When i got the original button from the tube, it wasnt my original doc b/c he had an emergency so he sent a colleague. He was the one that fitted me, but I wasnt really sure how anything worked at that time so I wasnt paying attention well enough. I think he just used the tube settings, but if my orginal doc was not sure how to place gtubes then there is a problem. Ive use that length ever since was ironically, 1.2 cm and I think my new length is only like 1.3 or 1.5 and if Emily needed a 1.7 that is kinda scary haha.

the gi office seemed very incompitent (sp?) when it came to g-tubes, I used a local office, instead of going to my cf center, who I am not sure would have had any more experience b/c its an adult only center. Anyways, the doctor was always super set against giving it to me anyways and when I went back to the office when I had the granulation tissue they said it was normal irritation and that it was just healing... umm no it was granulation tissue.

So thats my issue with them BUT, I did say this morning to my fiance, that I am calling them on Monday to have them check it out b/c my home health does their best, and wound care only can help with the actual tissue, I need to see the GI to see if there is an underlying issue, like the wrong stoma length... which is what my home health recommended. But maybe my GI office will have a button i can try and I wont have to keep waiting for the other one. at least there I can ask about the Mic-key again (which he said was for infants/peds b/c its smaller diameter he "thought"...)

I might try another gi entirely, Ive been trying to be referred to one my local pulmonologist likes, but he only works part time and so they havent called me yet. That is to check out possible slow stomach emptying btw...

Sorry I was kinda all over the place, but Harriet your post gives me hope about the longer tube, and Jenny, that helps b/c I am a 20 fr, not sure if I mentioned that... so right now I have 20 fr, 1.2 cm.

Right now I deflated the balloon b/c its probably the most irritated its ever been, and just have it taped down so it wont pop out, at least I can have a break from constant stinging/burning. Give my skin a rest from the constant pressure. It feels so much better right now. I am sure I am setting myself up for more leakage, but its all I can think to do b/c I dont want to remove it completely.

And seriously THANK YOU FOR YOUR REPLIES, sooo helpful!

theLostMiler · May 22, 2011

I have the AMT, its nice b/c it is really low profile but as you can see, I have leaking issues.

My situation is so screwed up haha. When i got the original button from the tube, it wasnt my original doc b/c he had an emergency so he sent a colleague. He was the one that fitted me, but I wasnt really sure how anything worked at that time so I wasnt paying attention well enough. I think he just used the tube settings, but if my orginal doc was not sure how to place gtubes then there is a problem. Ive use that length ever since was ironically, 1.2 cm and I think my new length is only like 1.3 or 1.5 and if Emily needed a 1.7 that is kinda scary haha.

the gi office seemed very incompitent (sp?) when it came to g-tubes, I used a local office, instead of going to my cf center, who I am not sure would have had any more experience b/c its an adult only center. Anyways, the doctor was always super set against giving it to me anyways and when I went back to the office when I had the granulation tissue they said it was normal irritation and that it was just healing... umm no it was granulation tissue.

So thats my issue with them BUT, I did say this morning to my fiance, that I am calling them on Monday to have them check it out b/c my home health does their best, and wound care only can help with the actual tissue, I need to see the GI to see if there is an underlying issue, like the wrong stoma length... which is what my home health recommended. But maybe my GI office will have a button i can try and I wont have to keep waiting for the other one. at least there I can ask about the Mic-key again (which he said was for infants/peds b/c its smaller diameter he "thought"...)

I might try another gi entirely, Ive been trying to be referred to one my local pulmonologist likes, but he only works part time and so they havent called me yet. That is to check out possible slow stomach emptying btw...

Sorry I was kinda all over the place, but Harriet your post gives me hope about the longer tube, and Jenny, that helps b/c I am a 20 fr, not sure if I mentioned that... so right now I have 20 fr, 1.2 cm.

Right now I deflated the balloon b/c its probably the most irritated its ever been, and just have it taped down so it wont pop out, at least I can have a break from constant stinging/burning. Give my skin a rest from the constant pressure. It feels so much better right now. I am sure I am setting myself up for more leakage, but its all I can think to do b/c I dont want to remove it completely.

And seriously THANK YOU FOR YOUR REPLIES, sooo helpful!

theLostMiler · May 22, 2011

I have the AMT, its nice b/c it is really low profile but as you can see, I have leaking issues.
 
 My situation is so screwed up haha. When i got the original button from the tube, it wasnt my original doc b/c he had an emergency so he sent a colleague. He was the one that fitted me, but I wasnt really sure how anything worked at that time so I wasnt paying attention well enough. I think he just used the tube settings, but if my orginal doc was not sure how to place gtubes then there is a problem. Ive use that length ever since was ironically, 1.2 cm and I think my new length is only like 1.3 or 1.5 and if Emily needed a 1.7 that is kinda scary haha.
 
 the gi office seemed very incompitent (sp?) when it came to g-tubes, I used a local office, instead of going to my cf center, who I am not sure would have had any more experience b/c its an adult only center. Anyways, the doctor was always super set against giving it to me anyways and when I went back to the office when I had the granulation tissue they said it was normal irritation and that it was just healing... umm no it was granulation tissue.
 
 So thats my issue with them BUT, I did say this morning to my fiance, that I am calling them on Monday to have them check it out b/c my home health does their best, and wound care only can help with the actual tissue, I need to see the GI to see if there is an underlying issue, like the wrong stoma length... which is what my home health recommended. But maybe my GI office will have a button i can try and I wont have to keep waiting for the other one. at least there I can ask about the Mic-key again (which he said was for infants/peds b/c its smaller diameter he "thought"...)
 
 I might try another gi entirely, Ive been trying to be referred to one my local pulmonologist likes, but he only works part time and so they havent called me yet. That is to check out possible slow stomach emptying btw...
 
 Sorry I was kinda all over the place, but Harriet your post gives me hope about the longer tube, and Jenny, that helps b/c I am a 20 fr, not sure if I mentioned that... so right now I have 20 fr, 1.2 cm.
 
 Right now I deflated the balloon b/c its probably the most irritated its ever been, and just have it taped down so it wont pop out, at least I can have a break from constant stinging/burning. Give my skin a rest from the constant pressure. It feels so much better right now. I am sure I am setting myself up for more leakage, but its all I can think to do b/c I dont want to remove it completely.
 
 And seriously THANK YOU FOR YOUR REPLIES, sooo helpful!

hmw · May 22, 2011

Oh goodness, no wonder it is so tight. I cannot believe they jammed a 1.2-1.5cm into an adult...!!!

I agree that seeing a new GI is probably the best way to go at this point, but if you can't get in with a GI, a surgeon will be able to help since they do the procedure as well. We went through surgery to get Emily's placed because we didn't want the kind of tube GI would have given her (the long peg before changing to a button- no medical reason to start with one of those and I didn't want to subject her to that when she could go right to a button.) If they suspect motility issues a GI would be good to cover both issues all at once, but if it will be a long wait- try both specialties and see who will get you in faster, stressing you've dealt with this for sooo long and your HHC is recommending you get this followed up on.

hmw · May 22, 2011

Oh goodness, no wonder it is so tight. I cannot believe they jammed a 1.2-1.5cm into an adult...!!!

I agree that seeing a new GI is probably the best way to go at this point, but if you can't get in with a GI, a surgeon will be able to help since they do the procedure as well. We went through surgery to get Emily's placed because we didn't want the kind of tube GI would have given her (the long peg before changing to a button- no medical reason to start with one of those and I didn't want to subject her to that when she could go right to a button.) If they suspect motility issues a GI would be good to cover both issues all at once, but if it will be a long wait- try both specialties and see who will get you in faster, stressing you've dealt with this for sooo long and your HHC is recommending you get this followed up on.

hmw · May 22, 2011

Oh goodness, no wonder it is so tight. I cannot believe they jammed a 1.2-1.5cm into an adult...!!!
 
 I agree that seeing a new GI is probably the best way to go at this point, but if you can't get in with a GI, a surgeon will be able to help since they do the procedure as well. We went through surgery to get Emily's placed because we didn't want the kind of tube GI would have given her (the long peg before changing to a button- no medical reason to start with one of those and I didn't want to subject her to that when she could go right to a button.) If they suspect motility issues a GI would be good to cover both issues all at once, but if it will be a long wait- try both specialties and see who will get you in faster, stressing you've dealt with this for sooo long and your HHC is recommending you get this followed up on.

just1more · May 22, 2011

My son has the AMT and we love it. It is 2cm, so I agree I can't image how an adult has a 1.2 ~!@#$

We've not had any issues with leakage. The ONLY drawback is most hospitals (at least here) don't keep AMT's in stock, so we have to take our own extension when we are inpatient or they have to swap it out to a Mickey as that is what they have supplies for.

just1more · May 22, 2011

My son has the AMT and we love it. It is 2cm, so I agree I can't image how an adult has a 1.2 ~!@#$

We've not had any issues with leakage. The ONLY drawback is most hospitals (at least here) don't keep AMT's in stock, so we have to take our own extension when we are inpatient or they have to swap it out to a Mickey as that is what they have supplies for.

G-Tube Button options

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