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New Story: Mars: Scleroderma with Full Gastrointestinal Involvement

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#1 Judy Devlin

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Posted 19 July 2010 - 08:34 AM

We have just posted Mars' story on the main sclero.org site and invite you to read it:

Mars: Scleroderma with Full Gastrointestinal Involvement I finally started total parenteral nutrition (TPN, or tubal feeding) in May 2010 and it was an absolute success...
There are over 1,000 patient and caregiver stories on the main Sclero.org site.
Warm regards,

Judy Devlin
ISN Archive Committee Chair
International Scleroderma Network

#2 Sandy B

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Posted 20 July 2010 - 01:12 AM

Hi Mars'

Just wanted to say what a gut wrenching story yours is (no pun intended). You have been through so much and talked about difficult and very private subjects with such dignity, when at times given all the bowel problems you have had to put up with, you must have felt quite undignified. Your story has really moved me.

Take care

Sandy B

#3 judyt


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Posted 20 July 2010 - 12:27 PM

Hi Mars,

So sorry to read of your problems, and I have great admiration for your graceful acceptance of what is happening to you.

I too live in New Zealand (Auckland actually) and often envy the access people in other countries have to Scleroderma Specialists - I don't think we have even one in the whole country. Do you know?

However, it would seem that you are getting very good care and that is comforting. I have frequently thought my CREST might progress to that stage, but so far it doesn't seem to be. My rectum is rigid and the anal sphincter next to useless in spite of 2 surgeries to tighten it, but as far as I know so far my small bowel is pretty much okay. My medication seems to control the spasms in the jejunum and stomach so I have my fingers crossed for a halt to the progression of stiffening.

Hope you will continue to post and keep us in touch with you.

Best wishes and warm hugs,

Judy T