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RE Update Nissen Fund/Gastroparesis Esop Spasms


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#1 Sharonvandee

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Posted 26 June 2009 - 06:59 PM

Thanks so much to all those who sent well wishes to me they were very much appreciated. I am sorry I havenet replied till now.

I have had my Nissen Funduplication/Hiatus Hernia repair. After some drama post surgery Heart/Lung/Stomach/feberal temps I am slowly recovering. It is nice not to have the acid burning out my lungs and ruining my teeth. Lol not to mention the weight I am losing.

Unfortunately it has worsened the symptoms of my Gastroparesis to the point where soup n liquids is the best I can managed. Mashes and medication cause all sorts of issues from spasms to severe stomach pains. I can only drink half a cup of liquid at a time and dinner is now three to four tablespoons of soup and I am so full. The Gastroparesis means that I never get hungery and only eat as I know it is essential to survival. There are days when 1 meal is all I manage whereas the dietician says 8 meal is what I needs.

Is there anyone else out there with Gastroparesis either after surgery or before? What is the long term treatment?
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#2 Jeannie McClelland

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Posted 27 June 2009 - 05:36 AM

Sharon, I'm so sorry you didn't get complete relief from the fundoplication. Mine went like a dream, after the recovery period when I could only manage 'full' liquids in fairly small quantities. Once that was past (a good six weeks) I've been able to eat practically anything.

There is a Gastroparesis and Dysmotility Association website that has a lot of information that might help with some of the questions you might have.

Are you feeling well enough for a hug? Yes? Well, then I send you best wishes and lots of hugs,
Jeannie McClelland
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International Scleroderma Network

#3 Sharonvandee

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Posted 27 June 2009 - 03:58 PM

Thanks Jeannie

The webiste was very informative the seminar/webcast was invaluable giving me lots of information that helps me to put the pieces together.

I am trying to see the positve in all this but at times that can be hard silly me hoped I would get rid of a majority of the symptoms and live a Normal life lol What is normal? I now have to reevaluate and change that difinition.

I am extremely lucky though that my family is so loving and supportive it must be very hard for them at times I am sure.

So thanks again (((((((Hugs))))))))
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#4 Jeannie McClelland

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Posted 27 June 2009 - 04:59 PM

You're really very welcome!

I had to smile when you said you were "trying to see the positve in all this but at times that can be hard." Isn't that the truth!

I've developed this silly game I play with myself. When I think of one of the not fun things about systemic sclerosis (in my case), I say "Well, it could be worse. My leg could fall off and then these pants would really be too long" or something equally as ridiculous. Most of my family plays the game now too and they've come up with some crackers at times. People look at us like we're all crazy, but hey, the laughter and distraction really helps.

Thanks for the hugs and here are a few more for you!
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#5 Sharonvandee

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Posted 27 June 2009 - 06:12 PM

Jeannie

Got to laugh at your game and is similar to what we have been doing to cope I was devastated hubby says well at least you are alive, at least you dont need a feeding bag yet, at least when you are old n your teeth fall out you will have no problems with a soup and mash diet cause you will already be used to it.

Got to love em for there humour
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#6 red

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Posted 01 July 2009 - 12:46 AM

Hi Sharon, glad to see you back on the forum, but sorry you are having a rough recovery.
When did you have your surgery - was it May, if I remember correctly?
When I had mine done, they told me I would be eating normally by about 6 to 8 weeks after, but it took a lot longer than that to progress from eating just soft foods - more like 4 to 5 months. Even now, after 8 months, I still feel very full after only a half of a sandwich, and am uncomfortable if I eat bulky foods - salads, harder meats, pizza, bagels, etc. If I overeat, I get very unpleasant intestinal cramps, bloating, gas and diarrhea - my doctor says this is "dumping syndrome" - common after gastric surgery - the stomach can't handle the volume of food so it dumps its contents, only partially digested, into the intestines. I can keep it under control if I eat slowly, stick to small meals, and chew very thoroughly. I consider it a more than fair trade-off for complete relief of that terrible reflux that I had for years.

I remember well feeling painfully full after eating only a few tablespoons of mashed food. It may help to not have any liquids with your meal, wait 15 minutes after eating, then have a half a glass or so to clear your esophagus.

I am hoping you are feeling better very soon! Keep us informed about your progress.

red