Mic-Key button troubles

I have recently switched from a g-tube with internal bumper to a mic-key button and it's driving me nuts. First I got one put in that was way too short (that was the largest they had in stock and since they had to put something in after taking out my g-tube they put in a 2.5 cm button). I got it changed the next day to a 3.5 cm button, which felt a lot better but for some reason I thought that it was still too tight. I have no idea how tight the button is supposed to be. I could still pull it up and get underneath the external bolster to clean the stoma, but once I let go at the button it was really close to my skin.
Therefore I switched to a 4 cm button a day later (I know - three button changes in three days - not very nice on the stoma).
This 4 cm is looser and that is a bit more comfortable, but now tube feeds leak out of the stoma (and regular food as well) - I blocked it with a two more cc to have a tighter fit, but I still have leakage. The one thing that is really weird is that my stomach contractions pull the button in all the time and then suddenly it gets released and pops back against the stomach wall and I can hardly stand that feeling. Is this because of a poor fit or is this normal for balloon tubes? It just drives me nuts and I get really discouraged because I want to able to have the button in as it is so less obvious than the g-tube.
Any suggestions on what to do? Should I switch back to the 3.5 cm one (I still have it at home.)
Thanks a lot!
Julia

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Dear Julia,
I think that the 4.0 stoma length is too big for you. Did you know that your stoma length can be measured? There is a special tool your doctor can use to measure your stoma. I would highly recommend you do this.
If you go to www.mic-key.com, you will be able to find the tool I am talking about.
Good luck,
Michelle

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Hi Michelle!
Thanks for your reply - my stoma actually was measured (but I was put under for the removal of my peg-tube so I don't know what the measurements are) - he did put in a 2.5 cm tube because that was the largest he had available. That one was really tight and when I asked him the next day he admitted that he would have used a larger one - but he did not tell me the measurements. I have ordered a stoma measuring device today and will measure it again with my dietician (my gi doc is more than two hours away from where I live). I really suspect it is too big too. Hope the popping feeling will stop with a smaller one.
Take care,
Julia

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Dear Julia,
I am glad to hear that you ordered a stoma measuring device. That should be very helpful in you getting the right size of your Mic-Key button. Maybe you need to think about the french size you have picked. I use a 22 french. I think Mic-Key Gastrostomy buttons range from 12 french to 24 french. I just can't remember if the button goes smaller than 12 french or not. A bigger french might tighten up your button. I would run this all by your doctor first. I am only a consumer!
Good luck,
Michelle

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Hi, Julia. I've had a 4 cm Mic-Key button for about 10 years now at least and love it. My surgery in '85 gave me an 18" catheter tube with a cork in the end! So we've come a long way since 1985. I don't have and never have had any leakage, so something is WRONG. Tell your doctor. My main problem is the redness and itching around the stoma itself...this never clears up, it gets dry, then itches; that heals and then it gets sore...but I'm grateful to have something so inconspicuous as the button. Good luck and talk to the doctor about the leakage. Phyllis

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Julia, I get the popping sensation with my mic-key - I have never had anything but this type so I don't know if it is common, but I do know that it gets better with time. I still get that when I get "hungry" and my stomach actually decides it wants to work. It pulls the balloon deep inside. My doc said my body was trying to "eat" the balloon. Ick...anyway after it isn't as bothersome although it has never gone away altogether.

I've never had any leakage even after they put in a smaller diameter the last time - Keep yelling until somebody listens.

Lynee

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Hi Lynee!
I have switched back to the 3.5 cm mic-key and even though I still have the popping sensation it is not as bad as with the larger one and the leakage is better too.
It happens when I get hungry too. My dietician said the same thing as your doc. It does feel better today already and this morning when it started happening again I just tried to relax and do some deep breathing and that actually helped too - and because the button is shorter the popping back is not as bad because it sits tighter.
I have recently been switched over too more tube feeds and less oral foods and am really surprised to get hunger stomach contractions again - I guess liquid foods really do help with delayed gastric emptying.

Julia

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Phyllis,
have you tried using a mixture of calendula oil and tea tree oil? (Mix about 95 % of calendula oil and 5 % of tea tree oil.) I have come across this in a parents forum of tubefed children and I think it works really well. I use the calendula oil only everyday and the tea tree combination if there is some infection. If you google calendula oil you will come across quite a few sites about its great wound healing properties.
Take care,
Julia

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Dear Julia,
Glad to hear that things have settled down for you. I also find the less oral intake I have, the better my Mic-Key works. I have Delayed Gastric Emptying too. I also get the sucked in tube feeling when I do not eat.
If you have anymore questions, feel free to ask.
Take care,
Michelle

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Hi Julia and Michelle, It's good to hear someone else has similar issues because so often the docs look at you like you've grown another head or something. I absolutely agree with the notion that the tube works better when I use it more. If I skip a night because I just can't tolerate the feeding, I always have trouble the next day.

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One thing I do not know if they covered...the stoma depth check should also be done in a sitting position. The often just do it while you are lying down adn theat is going to give you a tight fit....some radiologist split the differnce in sitting and flat lenghts just to be careful....you chould be able to get under it to clean it. In my personal experience -too long is not really and issue as long as it doesn't "pistion" in and out...too short though is bad news.

I have a GJtube so it threads down 40cm inside and like others have mentions- the normal stomach action adn GI track stuff pulls it tight now and then---not usually an issue. Get some other doctor's opition or call Kimberly Clark's help line!

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I have gotten used to the pulling sensation already. My gi doc will have a look again at the button fit when I go to see him in two weeks. For now I am quite happy with the shorter button. I still have a tiny bit of leakage, but I guess that's normal?

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I was told that the leakage is normal. I had an oreo cookie one day and when I cleaned around the tube later, there were cookie crumbs!! That was a bit strange.
I'm cleaning the area because of the leakage about every hour because it gets sore otherwise, all that goo just sitting around the tube.
I emailed my doc about the oreo cookies and he said, "There is a hole in your intestines and what goes in can come out".
I have a lot of problems with granulations forming. The one I have right now needs its own zip code!
Don't know how long I have to maintain my weight before he'll consider removing it.

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I ordered both from an online pharmacy, received them and am trying to figure (math..) how to put 5% to 95%....eye dropper? I will try it tonight. Thanks.

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I had a hard time getting the right ratio as well - not because of the math involved but because of my not so very sensitive kitchen scale.
The ratio is supposed to be (a few examples):
- 100 ml calendula oil and 5 ml tea tree oil OR
- 50 ml calendula oil and 2,5 ml tea tree oil OR
- 20 ml calendula oil and 1 ml tea tree oil

Hope that helps.

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To stop the leaking, try Karaya Paste made by Hollister. When this dries, it forms a seal that will prevent leaking. Even if there is minimal leaking, it helps keep the skin from becoming irritated and raw. Sure hope this helps you like it has helped me!

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