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Question for those with GI issues

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#1 Chopper


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Posted 20 April 2011 - 01:56 PM


On Tuesday I will see my GI doctor, who may not know yet I have limited scleroderma. I want to make it a productive visit, of course. I've searched older posts here, and I see there are others similar to me (GI trouble, no/little skin involvement). I started having symptoms of gastroparesis in August and it has worsened since then, which of course concerns me for the future. I am not on any 'sclero' meds. So, I want to ask him, do you care for other patients with scleroderma with gut involvement? If not, should I see a GI doctor who does? Or if so, what should we be prepared for, test for, or watch out for?

I appreciate any additional advice or suggestions for questions.

Thanks a bunch!

Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#2 Jeannie McClelland

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Posted 20 April 2011 - 02:20 PM

Hi Chopper,

I'm fortunate enough to have a GI specialist who deals primarily with autoimmune related GI issues, but I understand that it might be rare to find one who does. If you're being seen by a scleroderma specialist, you might ask him if there is anyone he'd recommend (and/or ask his nurse, they're usually a great resource for this sort of question). I wouldn't rule out a doctor who has no scleroderma patients though.

Like any other regional involvement (lungs, kidneys, skin, etc.) it's the symptoms that are treated and the symptoms that seem to precipitate any special testing. And, like all the other scleroderma 'goodies', GI involvement is a highly individual thing. Some people seem to be hit harder in one area of the GI system and not at all in others. I've got involvement from top to bottom, but since having a fundoplication, GERD is the least of my problems. :) I'd say my symptoms are fairly mild and well contained. Everybody is different. Not anticipating problems before they happen is the best thing you can do for yourself, but to be informed, have a browse through the medical pages on GI Involvement.

Best wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#3 kacklebird


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Posted 20 April 2011 - 05:28 PM

Hi Chopper,

I don't know which state you live in, but there's a Dr. William Ravich who is one of Hopkins GI doctors who specialize in motility disorders and treats patients with autoimmune related issues. Good luck.

Take care :emoticons-line-dance:

#4 enjoytheride


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Posted 20 April 2011 - 09:20 PM

If he doesn't feel he has the expertise to deal with this, he can still help with general issues until you find someone.
I'm sure that others will be able to give you more direct, experienced information.
If you haven't done it, the UK forum might be a good place to look as I have seen more threads there about specific treatment.

I hope this is the start of success for you. (hugs)