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Margaret

Gareth update

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Hi Everyone,

 

Just got back from the hospital.  Gareth had his esophagus stretched --again -- second time now. The doctor said he would need it done every 12-14 months now.  She said that most people have a straight esophagus, but Gareth's looks like one of the silly curly, swirly straws!!   :lol:   It would explain why his food has problems going down. 

 

The curving is coming from the connective tissue disease, which is tightening some areas of the esophagus and not others, thus the twisting.  He has gastritis, which is nothing new.  She is upping his Prilosec to twice a day, for 6 weeks, then back to once a day.  She said when he complains about his food being stuck high in his neck area, it is really stuck in the lower 1/2 - 1/3.  It's the way the nerves/body/brain reads it. 

 

He wanted to eat as soon as he walked in the door, so he's not hurting too bad now.  :yes:

 

Take care, Everyone,

 

Margaret

Mom to Gareth, DS/ASD

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Hi Margaret,

 

Thank you for the update on Gareth. You know he is dear to all our hearts and we are always rooting for him.

 

It sounds like he has a marvelous g.i. doctor, who is explaining things clearly and treating him well. I'm sure Gareth will feel better with his spiffy newly enlarged throat, and more Prilosec, too.

 

Here's some yay-you-did-it balloons for Gareth: :balloons: :balloons:

And some teddy bear hugs: :emoticon-hug: :emoticon-hug:

 

And all the usual ones for you, too:

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Margaret,

 

Oh, poor Gareth, having his oesophagus stretched; it does sound rather unpleasant, but what a good thing that he has such an understanding doctor!

 

I do hope that, along with his increased medication, this will improve things for him and he will soon feel much better. Wanting to eat is a good start! ;) :)

 

Best wishes to him, along with a :bravo:  and a couple of dancing  :happy-dance:  


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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:emoticon-hug:  :emoticon-hug:  :emoticon-hug: Hi Gareth!  :emoticon-hug:  :emoticon-hug:  :emoticon-hug: 

 

Hi Margaret,

Thanks for letting us now how Gareth is doing. He knows we all care about him and hope he gets some relief from the procedure. 

 

Love,

miocean


ISN Artist

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Hi Margaret,

 

The description of Gareth's Oesophagus sounds rather like mine.   Four years ago when I had some Heart investigations I had a TOE Trans Oesophageal Echo.

and the technician had a very hard time trying to look at my heart from that direction

because he said my Oesophagus was floppy.

 

Now they say I have a condition called Achalasia which means it doesn't push food down the way it should.   So Gareth and I would seem to be sharing an unsually awkward problem.   I have had a dilation once years ago and there hasn't been any need to repeat that.

 

I know how he feels, it is tricky making sure dinner all goes down properly.   I have to make sure my food is soft and easy to swallow, which is not very different from lots of us here anyway.

 

Best wishes to Gareth

 

Judyt

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Hi Judy,

 

Is it painful or just discomforting?  I don' t know and Gareth doesn't communicate well enough to tell me.  :(  He starts this contorted *ticking* action with neck, face, and shoulder when eating. But if I ask, *Are you hurting?* he will say no.  It sure looks like he's hurting, somewhere.  Maybe his contortions and stretching are forcing the esophagus to go straighter and food goes down.   Who knows?!?!?     :emoticon-dont-know:   He already washes his meals down with milk, juices and water. 

 

Thanks for all the support. Gareth smiles and laughs at your emoticons!! 

 

Take care, Everyone.

Margaret

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Hi Margaret and Gareth,

 

No swallowing is not painful, and in some ways I can understand Gareth's contortions, but never feel the need to do that myself.   The worst/most annoying thing is that I get hiccups very easily.   My food seems to be going down OK then suddenly I get a 'log jam' feeling and next thing I am hiccuping.   That can be quite uncomfortable and embarassing in public.

 

The most important thing is that the food should be moist and easily masticated, and then I must remember to eat slowly.   Sometimes, just sometimes, I get quite hungry and forget to go carefully and that is when things go wrong.

 

I believe that I have Gastroparesis as well, nobody has said as much but recent manometry could find no activity in my Oesophagus or stomach, and in the past Gastroscopies have shown a total absence of Peristalsis.   Because of this I follow the Gastroparesis dietary guidelines I found on-line and I know that helps.   Because of the Gastroparesis my stomach emptying is very very slow - gravity is the biggest help - so unless I eat small amounts and infrequently I feel over full.

 

Has Gareth had Gastroscopies recently, and if so what sort of comments have been made about what can be seen?

 

Best wishes to you, you are such a great Mum.

Judyt

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Hi Margaret,

 

I'd just say that in general, difficulty swallowing is not painful.  As in, not continuously painful, for most of us but there are exceptions, especially when there is a lot of heartburn or throat ulcers, or severe narrowing.

 

And when food goes down very slowly or actually gets stuck, that can be another matter entirely, and one that sometimes depends on the food, too.  For example, soft scrambled eggs would be perhaps a bit uncomfortable if stuck (although its not as likely to get stuck at all if it is well chewed), but dry toast, poorly chewed, could feel very harsh or grating or irritating or downright painful, like it is scraping the sides of the throat going down.

 

Most of us quickly learn that we need to eat slowly and chew carefully, and we tend to favor softer foods.  So for example, Gareth would probably find a breakfast of custard preferable to dry toast, or prefer a smoothie over chips and salsa.

 

Oddly enough, though, there is a gene that causes some people to dislike soft foods (like pudding) because to them such things taste slimey. However, most people thoroughly enjoy soft foods and incorporating more soft foods -- or even "liquid diet" recipes -- can make mealtimes much more enjoyable when trying to cope with swallowing difficulties.

 

See more on our Scleroderma and Difficulty Swallowing (Dysphagia) page.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Well, Shelley a 'gene which causes one to dislike soft foods' I had never thought of that.   Our children always loved jelly and custard and stewed apple but our grandies can't stand those foods.

 

Our daughter bemoans their fussiness because she still loves those comfort foods.   For my birthday dinner this week she made those things for dessert but the children stuck to their usual icecream.

 

Whatever next!!!

 

Judyt

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That's cute....a gene to dislike soft foods.  Try throwing in the autism gene for a SUPER finicky eater!!!  :(  For years, Gareth would only eat Cheerios, Spaghetti 'Os, ice cream and fruit salad (a concoction of fruit cocktail, orange jello, and cool whip).  Everything else was met with distaste, gagging, vomiting, etc. It's very common among autistic kids.  Fortunately, that phase has passed. :emoticons-clap:

 

Take care, Everyone.

Margaret

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Hi Margaret,

 

I hope Gareth feels better. I am sure the whole procedure will be painful to him as well as you.

 

Please take care.


Kind regards,

 

Kamlesh

 

 

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Sorry to have missed this! Big  :emoticons-clap:  :emoticons-clap:  :emoticons-clap:  :emoticons-clap: to Gareth and big  :emoticons-clap:  :emoticons-clap:  :emoticons-clap:  :emoticons-clap: to Margaret as well. 

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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