Diagnosed with scleroderma: Inability to stop diarrhea

Posted by rinstaffordaz @rinstaffordaz, Oct 14, 2017

Diagnosed with Scleroderma December of 2016
After one year of many doctors began treatments lost 70 lbs in less than one year unexplained
Since treatment began lost another 80 lbs
Was accepted at Mayo in Scottsdale June 28, 2017
Weight was 127
Gained 20 lbs with TPN and IVIG TREATMENTS
PROBLEM is severe Diarrhea
Have 2 good days and 4- to 5 bad days losing 10 or more lbs
GI team prescribed DIPHENOXYLATE- ATROPINE to replace IMODIUM
during that time I've consistently had Diarrhea everyday but one when I had horrible constipation
I'm scheduled for Surgery Monday am to install an IMPLANTABLE VASCULAR ACCESS DEVICE ( IVAD )
Can anyone advise how to stop the Diarrhea?
Should I cancel the surgery till feeding better?
Thanks

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ricey | @ricey | Nov 12, 2017

But I'm in a lot off discomfort I can't feel like this until April I will be like a skeleton I phonedthe doctors secretary to see if I could get a earliereply appointment but no one got back to me

Teresa, Volunteer Mentor | @hopeful33250 | Nov 12, 2017

@ricey

You need to keep calling and report your symptoms. Sometimes we have to persist in order to get help. It is important to be your own patient advocate.

Teresa

sonya_nc | @sonya_nc | Nov 24, 2017

Hi. I am having gi issues and have limited scleroderma. I am wondering about the value of having my gut flora evaluated to id which bacteria strains are / aren’t present so that I can target the appropriate mix of probiotics to better align my gut and hopefully improve its’ health and strengthen my immune system.

Has anyone done this and did you have improvement? Are there labs I can access via the mail (sending stool samples) who would provide results and make probiotic recommendations or should I see a GI and specifically make this request?

I saw this article: https://www.nature.com/articles/s41598-017-14889-6 and felt it was something I should explore.

Thank you. Sonya

Colleen Young, Connect Director | @colleenyoung | Nov 24, 2017

In reply to @sonya_nc "Hi. I am having gi issues and have limited scleroderma. I am wondering about the value..." + (show)

Sonya, I'm tagging @olga1dubrovsky2_babies @mooneagle @aussiemagpie @gmaapple @csjolundjr and @mariann in this discussion. Perhaps there are some who can speak to gastrointestinal (GI) issues and scleroderma. You may also be interested in this discussion started by @rinstaffordaz, who also has scleroderma.

* Inability to stop diarrhea https://connect.mayoclinic.org/discussion/inability-to-stop-diarrhea/

Sonya, have you talked to your GI specialst about gut flora evaluation and the effectiveness of probiotics to improve the gut flora?

sonya_nc | @sonya_nc | Nov 24, 2017

In reply to @colleenyoung "Sonya, I'm tagging @olga1dubrovsky2_babies @mooneagle @aussiemagpie @gmaapple @csjolundjr and @mariann in this discussion. Perhaps there are..." + (show)

@colleenyoung Thanks for tagging others for this post inquiry. I have rheum appt in about a week and will requesting GI referral. Thanks for your help and ideas. Sonya