Can anyone provide me with advice on stoma coverings. I do not use valves and rely on a product called laryngafoam which I find of varied quality although always of course from the same manufactuer. Being self adhesive and small it is by far the most user friendly covering lifting easiliy to clear the stoma of mucus. However when exerting myself, say in the garden or when doing it myself in the house or more recenty at ballroom dancing classes or when out at functions I find the sweat generated results in loss of adhesion of the filter's glue and I can lose it without knowing to the embarassment of third party's and by virtue iof that myself when mucus can be inadvertently sprayed on my clothing if not surroundings. I now use in such circumstances a bib, but this is tied rather than fixed with velcro, awkward to put on and change if it gets saturated with mucus. Clearing the stoma becomes a major effort requiring a mirror and the bib itself generally feels heavy awkward and uncomfortable to wear. Are there other user friendly protection devices out there that I can try and if so whom should I contact for supplies. I really would like a "heavy duty" form of the foam self adhesive filter that would stay in place and resist sweat but that might be too much to ask, otherwise a smaller, lighter bib with velcro tabs.

I understand that this is an international forum and that other countries not least the United States may have solutions and manufacturers who could perhaps licence manufacturers here in the UK.

This is a small but sensitive problem to this laryngectomee and any intelligence would be most warmly received.

Provox and Kappitex provide bases and casettes available on prescription. I find them a great help.
In comment on your other posting I really cannot laugh, any emotional or other effort results in severe bresthing difficulty, feeling likw suffocation. You are obviously more fortunate than some laryngectomees. In general female laryngectomeees tend to have smaller stomas than those of their male counterparts. There is also a very wide differeence in the operation, again some of us have more than the larynx taken. It is to try to help all kinds of laryngectomees that I continue to go to meetings. Research found that in general people with severe speech impairments are often in denial, remain in small family/long term friend contact only. As I had moved to a new area not long before the cancer diagnosis I had los these contacts.

Hi LMB Thanks for the information, I have in fact tried the Provox products but without much success as I produce a lot of mucus and cough frequently blocking filters and causing distress in breathing which is why I have reverted to the foam filter simple but effective except in any form of exercise, such as dancing, when sweat loosens the adhesive. I have also read Dr. Voshi's reply to the other posting and am sorry that you are unable to do what I can. We are each different and the effects on us obviously fluctuate and I admire your advocacy of the problem of communication for laryngectomees.

Yes I am fortunate and give thanks for appreciate my good fortune, most laryngectomees who rely on their strength for their occupation will find it impossible to return to work because they can no longer cope with the labour involved in their work. Even I find gardening a real chore nowadays and can only do it very slowly indeed. I trust my replies did not offend you for none was ever intended and I admire your resilience and active campaigning .

Hi,
This is Ananth who too is stuck with a stoma - have had it for five years and will live with it for the rest of my life. When first operated on - I used to hate seeing myself in the mirror but with time and acceptance, I decided that I should do something that would not just look nice but also cover my stoma well. In the first instance I created a home made Silicon cover which fits on very well on the stoma button and was okayed by my doctor as the same is made of medical approved silicon. That ment keeping all dust and pollution at bay. I would then used Dynaplast which is almost skin coloured and give it a shape by which I would include a piece of strechable skin colored gauze in the centre - which allowed me breathe easliy. I walk aroung these days just as I used to six years ago when I was hit by the Cancer. I wear t-s, formals, and most people think I have hurt myself as they cannot imagine what is underneath. Once in while when I am just going out to the market etc. I use a girls hair band ( strechable ) which come in various colors and hides/protects the stoma very well. I have a various collection of accerories that I can put onto the band ( which goes right around my neck ) and trust me it looks like a fashion statement. I really wont be surprised if it does become a trend!!

Even regarding my peg tube through which I have been feeding for the last five years and will do so in all the years ( or time ) I have left as neither the stoma nor the peg are going to be removed due to the massive number of complications I have add. I used to feel really embarrased to let anyone see me using my peg - but now I really do not care and find that people are very understanding and in fact go out of their way ( even strangers ) to make me comfortable.

This message has been edited. Last edited by: ANANTH,

Thanks for your information Ananth you are remakably positive I am fasinated by your DIY cover. I tried various valves covering the stoma initially but as I generate a lot of mucus and cough frequently these items were not very productive for me and the expense was not in my opinion warranted so I reverted to the flesh coloured foam filter which simply covers the stoma having a stipr of adhesive on the top. It flaps like a flag of course as I breather but I do not need to cover my stoma to get the pressure to create sound I can do that in the oesophagus however admittedly at the price of volume. I would appreciate if you could narrate how you fabricate your own prothesis and if you think it is possible for mye to copy under a royalty free licence of course and not to exploit other than for my own personal use!!

God bless you Ananth you are a real tonic to the folks who use this forum, long may you be able to continue to do so.

Hello there Dancingwiththeroses,
Thank you for all your compliments and I really think each one here is a fighter vin their own way and we all compliment each other by sharing our experiences. I have no choice but to remain positive as I have two young sons to look after, then there is my wife, my mother and my elderly aunt. Being the eldest - the onus of taking care of the family falls on me and more so since all my siblings do not live in India.

I will send you the details of fabricating the orator and you dont have to worry about any fees etc. I only patented it so that its not misused by someone else, who would make an attempt to sell the same at sky high prices and once again it would be out of reach of the common man. Here at least I get to control the price and have the liberty of even distributing them free, which I do to ( 100 pcs. each) to the two hospitals that treated me.
If you can send me your email details, I will send you the details and trust me you will laugh at how simple it is.
And to finish off here as its almost 1 am - tuesday morning here in India - I want to get into bed as I leave for office at 0730 am.
Take care, await your reply and lots of love,
Ananth

Dear Dancing with the roses,
I am really sorry for not having got back on the orator front - but let me you into the secret, which you can make at home provided you wear a stoma button- get a few baby feeding bottle nipples made of high grade silicon and make an oval shaped incision on the very edge (top) of the nipple. It should be just strong enough to move around like a flap. When you breathe in air will come in but when you exhale it will not. This is the very basic though we have done much more to make it easier and better. I will try and send you some photographs but do try this. Once you have made the flap just enough for it( the flap ) to open into your throat when you inhale it will work perfectly well. Cut the nipple from below to the size of your stoma button length but ensure that the flap comes on directly over the opening of the stoma. If you feel you are wearing a bigger sized stoma - you will find it difficult to insert it in to your throat but if you pick up one size smaller - it will fit like a dream and you are on your way to a normal speech. I once again apologise for the massive delay in replying to you and I really hope you try this out and hope you do start talking ( if things are ok - you can pass on these details to someone else who may require some advise ).
looking forward to hearing from you and keeping in touch more often.
Ananth

quote:

Originally posted by dancingwithroses:
Thanks for your information Ananth you are remakably positive I am fasinated by your DIY cover. I tried various valves covering the stoma initially but as I generate a lot of mucus and cough frequently these items were not very productive for me and the expense was not in my opinion warranted so I reverted to the flesh coloured foam filter which simply covers the stoma having a stipr of adhesive on the top. It flaps like a flag of course as I breather but I do not need to cover my stoma to get the pressure to create sound I can do that in the oesophagus however admittedly at the price of volume. I would appreciate if you could narrate how you fabricate your own prothesis and if you think it is possible for mye to copy under a royalty free licence of course and not to exploit other than for my own personal use!!

God bless you Ananth you are a real tonic to the folks who use this forum, long may you be able to continue to do so.

Dear Dancingwithroses,
I really feel like a heel for not having reverted to you. I find it very difficult to excatly explain how the DIY orator excatly works but as its now been approved and patented worldwide - I can send you a few pieces ( No Charges!! ) and see if they work for you as it has for so many people here.
With warm regards of Xmas day,
Ananth

Hello Ananth,

Please do not feel uncomfortable about the delay, this is a large site and it is not possible to evrything we desire when we plan, I am just pleased that you care enough to help.

I have never used a stoma button, but that does not mean that I could not get and use one as part of a solution to my problem. I use oesophagal speech quite well, although it can be tiring by the end of a busy day in the office, I do not need to cover my stoma to effect speech and find that I am understood with only the minimum of concertration on the part of the hearer. I am syurprised because when I listen to my taped voice I find it difficult to follow. I lecture to my colleagues on internal training programmes, but cannot use electronic amplification devices because of this problem, but as my lectures are in small classes I find communication does not require such amplification.

My primary concern is an efficient protection to the front of the stoma so that my lungs are protected from dust and foreign bodies and moistness is maintained uin the air I draw into my lungs. As said the most efficient method to date is the Laryngofoam filters, the disadvange being that the adhesive will not work when I am performing any strenuous activity which generates a sweat or indeed in very warm summers not really a major problem in Scotland, although our climate is getting warmer!

However I would be pleased to get more details of your device as I am sure would many hundreds of other users of this site.

Kind regrads, Alan.

Dear Alan,
I know its a big site but if I can do something that would help - it would be an achievement in itself. It would make me understand a lot of things.
Alan, you were talking about the stoma protection and almost all doctors have given up one me as in any case I never follow their instructions. The problem is that they follow a rule book which tells them what should and not be done and thats it. I carry some glycirne spray around the house and whenever I feel the dryness coming on, I spray a bit into the stoma. It not only keeps the stoma clean but also keeps the mucus that hardens to fall out without much of a fuss. When I have to go out all I do is wear high neck cotton T.s and with the orator on there is no question of dirt or pollution getting into my system. As and when I feel the dryness coming on - its again a quickie - removal of the stoma button- a liberal spray and am back in action. I really do not feel you should worry too much about the humidity and the pollution etc. bit. The high or turtle necks give you enough breathing space and also keep all infections etc. at bay. I have never used any of the items that were suggested to me and am perfectly fine. Well what may be fine for me may not be for you - but there is no harm in giving it a shot.At least you will not have a problem with the adhesives etc. as you wont need them.
Let me know what you think.
Wow - what would'nt I do for a Scotch on the rocks at the moment!!!!
Take care Alan.
With warm regards from a freezing Delhi,
Ananth
PS : I will send you the details of the orator in the next mail. Meanwhile what you could do is pick up four silicon feeding bottle nipples from any store that sells babies milk bottles etc.Once you have them I will keep telling you what to do and who knows you may be able to do it yourself and believe me its not difficult. I would also suggest get a stoma button but do let find out your recommended size before you do so. Lets see if we can do it this way and who knows........
Take care, write and with warm regards from a freezing Delhi,
Ananth

This message has been edited. Last edited by: ANANTH,

Hi Alan,
Have you picked up the required items? If so I can guide you to make your orator.

,
Would you too do me a favor and pick up four silicon baby bottle feeding nipples and ask your ENT for the stoma button ( I use a 7.5). I could, as explained to Alan try and guide you through the proces of making the orator. If it turns out right, I will be the happiest guy around.

Take care all of you'll and do revert soon so that we can starton the orator right away. Its come to a stage where I cannot imagine my going out without the orator and the speech is so clear that most people find it crazy when I tell them that I actually have no voice!

One last thing - Dr. Joshi is a great doctor and a good friend to all of us and I respect him a lot. However, everything that a doctor recommends may not be what you are comfortable with. One should do excatly as one wants and the way you want it as for all reasons you are not loosing anything but instead gaining from the lessons you dig up for your self.
To give you'll an example - I have been told not to lift weights as it may have some real bad effects on my peg tube but somehow that never bothered me and I still carry on spending an hour at the gym - lifting eights and running my daily quota of 4 kms. Even my food is not what the doctors recommend - though I feed through the peg I "eat" almost everything that he rest of the family have. the only difference being that the same food is in a lquid form dilutaed a bit with milk cream and butter. I chew on the actual food for its taste and bin it and now have been asked to control my weight.
So my friends- life is learning and not geting scared of tomorrow. Start living your lives in the most positive manner possible and see the difference you make not just yourselves but also to all those who care for you. I would be glad to recieve your emails on my email id: ananthshenoly@email.com and will revert well on time. I could even send you photographs of all the stuff I rambled about.

I was just reading through the e mails and came across one from dancing with roses dated 10th of April 2006, in it she says that she wears a laryngyfoam stoma cover, but that when she sweats it comes unstuck.
The answer I have found to this problem is to buy a roll of 1.25 cm micropore tape from Boots etc, its actually used to keep dressings in place, but I stick it on to the sticky top of the laryngofoam and stick the sticky side to my skin, it works extremely well, and my stoma cover never falls off. I hope this will be the answer for you. Regards Ann