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

I’ve be plagued with daily diarrhea for several years. Lost some weight, not as much as you. Never knew when it would hit. Can’t ever make plans for my mornings. Like you, out of 7 days, I would have diarrhea 5 days, sometimes up to 10 times/day. Went to the Dr. He wanted to run the same tests I had 2 years ago. All came back normal except the bills! I did my own doctoring instead. Went lactose free a couple of yrs. ago. Started glutton free. There was some improvement, but not totally. Last month, I pulled out my back for the first time in my life. I took some opioids to get me to sleep at night. Usually, one pill always constipated me & I’d stop. Instead, it stopped my diarrhea! A miracle! I feel so much better. I know I can’t stay on the pain meds forever, but I’m just sharing with you what worked for me. Wish you the best. I know what you’re going thru.

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Diarrhea can be caused by so many things. @66andcounting has your diarrhea stopped altogether. Was the cause ever discovered?

@rinstaffordaz: In many people, scleroderma harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Here is more information from Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/scleroderma/home/ovc-20206014

@joyful1 @ctkoontz @suzylulu @mooneagle and @dash99999 have talked about scleroderma here on Connect and may have more insight for you with regards to the diarrhea. I’d also like to let you all know about the upcoming Video Q&A about Scleroderma on November 15. See more details here:
https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

@rinstaffordaz did you decide to go ahead with the surgery? How are you doing?

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