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kiwimum03

Scleroderma Esophagus

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Hi Kiwimum,

That is a downer isn't it, but I don't think Motilium is the only drug available. Bearing in mind that I am not a doctor etc. etc. and I don't know the first thing about lactin and prolactin - and probably never will - if it was me I would be asking about alternatives.

 

I know how much I hate it when I get those cramps so I do feel really sorry that you have to endure them. I hope you are trying to get some balance into what you can eat, you don't want to find you are anaemic or malnourished in some other way. I was put onto a liquid meal replacement when my stomach was recovering from surgery and I was dead skinny - but maybe you would say that won't stay down either.

 

We will keep thinking of you and hoping to hear that you find a solution.

 

Warm hugs

 

Judy T


Judy Trewartha

(Retired) ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Judy,

 

I am definitely going to ask the doctor when I see them for my biopsy results about alternatives to Motilium.

 

I also asked about the meal replacement last time as I am already anemic (I have been for years, which I have been told is due to chronic disease, I have microcytes which are small and pale).

 

They were a bit reluctant to give me meal replacement as I have been vomiting, but honestly I need something. Even if half of it stays down that's better than nothing. :)

 

But I have faith, it will all get sorted, hopefully sooner rather than later.

 

Thanks for your support :)

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Hi Kiwimum,

 

Sorry to hear you are still suffering so much, but glad your doctor is taking you seriously. Stand your ground girl and if you are not satisfied with your results then ask to see someone else. You know how bad you feel and if these doctors had to spend one day in the life of you, they would understand how poorly you really do feel, so don't ever be brow beaten!!!

 

The past eighteen months in particular for me (although I have had gut problems for about nine/ten years now ) have been a bit of a nightmare with symptoms changing and worsening, although I have to say my symptoms have not been as severe as yours. I had an endoscopy and biopsies a couple of months back which revealed nothing and then a barium swallow last month. Anyway I finally have an explanation for my problem backed up by the xray results from the swallow. Now waiting to see if new meds prescribed by gastro doctor will be the solution to the problem (but trying to get hold of them is a bit of an issue right now, so will let you know how I get on)

 

Don't give up, if you don't fight your corner, no one else will and hopefully an explanation and help for all of your problems is just around the corner for you too.

 

Take care, my thoughts are with you.

 

Sandy B

 

P.S. Have you tried drinking full fat milk for it's nutritional value, little and often?

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Thanks for your lovely message Sandy,

 

I am sorry to hear you have been having a hard time with gastro issues too. I do hope your new medication can help.

I have tried drinking milk, but am not having much luck with dairy, it gives me diarrhea unfortunately, I don't know if it is the milk or the fat.

 

But I will keep chugging along :)

 

thanks again,

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