judyt

Incontinence

28 posts in this topic

Sheryl,

 

Yes, Carthage is not that far from me. I lived in Memphis a couple of years but hated it. I LOVE the Nashville area. Hey, if you know of any really good antique furniture stores around there let me know. And, thank you, I am really enjoying the board.

 

Linda

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Hello to you all again.

 

First of all thankyou to all those who have replied to my questions. Still nobody who has had to have a colostomy, never mind!!

 

Sacral Nerve Stimulation looks like a good solution for those of you who have chosen that road, but unfortunately, as far as I know at this moment it is not available in this country.

 

My general practitioner doesn't know of anybody doing it, and some of the literature I have read on the internet say it is available in Australia but there is very little uptake because it is not performed in the Public Hospitals and Insurance providers won't fund it either. I will continue researching it here but am not very optimistic.

 

We have good friends in Vancouver area who are both doctors so maybe I could wangle a trip there to have it done!!! We would still have to pay of course - ah well we can but dream!!

 

Remembering back to some posts from those who have diahorrea as well makes me want to say that I used to as well, but lately my Gastro Doctor has had me on a higher fibre regime as well as a bulking agent and a frozen Kiwi fruit juice called Kiwi Crush. Kiwi fruit have wonderful natural abilities to help digestion, trouble is that once the fresh fruit get to the US or UK they are not really themselves any more!! But I think the vitamins and enzymes they make will probably still be there. I know one shouldn't promote commercial preparations but this is just a fruit in its naturally created form - well squashed and frozen!!

 

Right now I had better get back to doing more research on Sacral Nerve stuff.

 

Love and Hugs to you all.

 

Judy T

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Hi All, particularly Prof. Plumb,

 

I am back on the job of trying to discover whether Sacral Nerve Stimulation is an option for me. Most businesses are back at work this week, but so far I have not had any luck with the information I am looking for. A girl at the Ministry of Health couldn't find anybody to ask and said she would phone back!!

 

I asked the Receptionist at the Gastro Clinic - she said somebody would phone me back but nobody has so far. Now I am wondering just what area it would come under - maybe it is Neuro Surgery - does anybody know.

 

Hope it is a bit warmer where you all are - it is pretty hot here.

 

Best wishes

 

Judy T

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Hi judyt

I hope the holiday dinner hasn`t upset the stomach too much! Happy new year to you. I had my Sacral Nerve Stimulater fitted in 1999 at a hospital which specialised in bowel problems, it was St Marks in Harrow England (thoroughly recommended).I have recently had a problem with my implant and as it is at the end of it`s second 5 year cycle I guess I might be in for having it changed. Although this is something I could well do without I would not still be working if they hadn`t fitted it. I find the best way to deal with the stomach problems is to inform friends and family then we all accept it as normal for me. Small things can help like when I go to watch motorcycle racing with my friends we use the motorways because there are more service stations with toilets,some of the toilets at the racing circuits are another matter. Sorry to go on but I have tried to live with it for a long while and if I can help anyone to cope it will make me feel better.

 

Regards Brian

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Hi Judyt

 

It is now about 12 weeks since I had my sacral nerve stimulation done and it seems to be working fine and has certainly helped me.

You asked about which specialism the operation might be done under, if it helps mine was done under the Department of Lower Gastrointestinal Physiology and the Colorectal Surgery departments, hope this helps.

 

Buttons

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Buttons,

I am glad your surgery is helping your problem. I hope things continue to get better.

 

miocean


ISN Artist

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I just wrote a post but I think I did the wrong thing and lost it. Will try again.

 

Thanks Buttons for your reply, pleased to hear that your implant is helping. Prof. Plumb gave me the same sort of info about what area of medicine it comes under and that is where I have been asking questions. The Colorectal Surgeon who did my previous surgeries never mentioned it as an option, my current Gastro man who covers the whole area from mouth to end product never mentioned it, I currently have a question in with the Doctor who did the Manometry but so far no answer. My current plan for today is to phone the Auckland District Health Board offices and see if anybody can come up with more than just - Uhhhhhhh?

 

I started to think I was barking up the wrong tree in my effort to find information and that I should be asking for Neuro surgery. Anyway I will keep on asking.

 

Will keep you all posted.

 

Judy T

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Well, my phone call to the Auckland District Health Board, finished up with a message from a Registrar asking me to be sure I had the right spelling because he had never heard of Sacral Nerve Stimulation. So much for that idea.

 

I just read Willow's post about no Scleroderma Specialists in Seattle - try living in a country with no sclero specialists anywhere, and a dearth of people who even know what you are talking about!

 

Anyway I did have a little victory today, I finally found a site which listed Sacral Nerve Stimulation practitioners in Australia. LOADS OF THEM! So my task for next week is to ask my general practitioner what to do as the next step.

 

I expect the best thing will be to ask the Gastro Specialist to act as intermediary. We shall see.

 

Anyway I am feeling quite uplifted now. Australia is not too far away and I have lots of cousins living in Sydney. Everybody's information, my general practitioner told me the way to find out about various procedures is to do an internet search on a Cochrane Review. So for example I typed in Cochrane Review of Sacral Nerve.... . Hot hugs again Judy T

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to all with incontinence/diarrhea/constipation problems:

 

This little joke says it all!

 

All the organs of the human body were having a meeting, trying to decide who should be the one in charge.

 

"I should be in charge," said the brain, "Because I run all the body's systems, so without me nothing would happen."

 

"I should be in charge," said the blood, "Because I circulate oxygen all over so without me you'd all waste away."

 

"I should be in charge," said the stomach, "Because I process food and give all of you energy."

 

"I should be in charge," said the legs, "because I carry the body wherever it needs to go."

 

"I should be in charge," said the eyes, "Because I allow the body to see where it goes."

 

"I should be in charge," said the rectum, "Because I'm responsible for waste removal."

 

All the other body parts laughed at the rectum and insulted him, so in a huff, he shut down tight. Within a few days, the brain had a terrible headache, the stomach was bloated, the legs got wobbly, the eyes got watery, and the blood was toxic. They all decided that the rectum should be the boss!


Sharon T.

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Very good Sharon!!!!!!!!!

 

If any of you have been reading my other posts you will know that the past few days I have got hung up on my heart problems and the poor old rectum has been moved to the back benches

of my mind.

 

I did mention SNS to my Gastro man on the phone and he said it is done here but ONLY for people who have normal anatomy and by no stretch of the imagination could that part of my anatomy be described as 'normal'. However, since he is also the person who suggested I should FORGET (as if one ever could) about the Pulmonary Hypertension I am inclined to take that comment with a very large pinch of salt and continue my enquiries. For those of you who don't know, the Cardiologist said yesterday that the PH is very likely a consequence of Mitral Stenosis and not necessarily Scleroderma SO if I HAD just forgotten about it who knows what sort of a pickle I might be in later on.

 

What I am interested in now is whether those of you with SNS installed could describe your sphincters as 'normal'. Surely if one has sclero affecting the rectum and sphincters and need 'help' then a'normal' anatomy is about the last thing you would be in possession of. Not to mention of course one's sanity!!!!!!!!!!!!!!!!

 

Maybe I am wrong - will look forward to hearing what you all have to report.

 

It is still HOT hugs from here to there.

 

My brother reports from Sweden that it is -40C where he lives!!!!!

 

I sent him some HOT hugs too.

 

Judy T

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Wonderful joke, Sharon & how true!!! :lol::lol::lol:

 

Thank goodness I don't have gut involvement at present ( touch wood!! ;) ) Here's a sympathetic :emoticon-hug: for everyone who does!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Judyt

My sanity went ages ago but thinking about it, it may have never been there in the first place!! After the implant was fitted to me the hospital ran tests with it turned on and with it turned off. There was a significant increase in the muscle strength of my anus with the implant turned on. I doubt if I was normal in that area in the first place because the muscles were being affected by scleroderma. I hope this helps.

 

Cheers Brian :wacko:

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