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rinstaffordaz
@rinstaffordaz

Posts: 6
Joined: Jul 02, 2017

Inability to stop diarrhea

Posted by @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

REPLY

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.

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?

I have had severe diarhhea for 6months just had camera down and MRI scan it showed I have intestinal metastasis in my biopsy does that mean it could be cancerous

@colleenyoung

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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Went to the Dr. this week. He renewed my pain medication for my back pain. Take 1 pill every night to get to sleep. The bonus is it continues to regulate my diarrhea so that I can say I am now normal! Nice side affect! I don’t worry about becoming addicted since I only take 1 pill/day.

@ricey

I have had severe diarhhea for 6months just had camera down and MRI scan it showed I have intestinal metastasis in my biopsy does that mean it could be cancerous

Jump to this post

@ricey

Welcome to Mayo Connect, we are glad that you joined us! Regarding your question about your biopsy results – have you contacted your doctor with this question? At Mayo Connect we are patients, just like you, and cannot interpret test results or make diagnosis. This is best left to your doctor. I would encourage you to call the doctor’s office or send a message through your patient portal and make this inquiry.

We would enjoy getting to know you, so please share more with us, as you feel comfortable doing so. For example, have you ever had a cancer diagnosis previously? Is the diarrhea the only symptom you have?

Teresa

@colleenyoung

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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Yes I did have the POWER PORT surgically installed in mid October
My wife and I were being trained ( As we had been with the P.I.C.C. Line ) by the Home Care Nurses
The second day of training the nurse confirmed a temperature of 100.7 and said she had to report this to the Mayo staff
Two hours later after completing a two hour massage and feeling great I checked my voice mail and the Mayo’s message said report to the hospital’s emergency department immediately
I was admitted for 5 days numerous CT Scans
Lab works,
The infectious disease team was able to determine I had a blood infection and urinary Infection as well as E Coli bacteria infection
They concluded due to the infections that the POWER PORT was compromised and would need to be removed
They recommend going back to the PICC Line
THE first 3 days I was limited to clear liquids to rest the Gut
The last 2 days I could eat anything and did left hospital feeling better and for 2 to 3 days ate too much then the Constipation returned and extreme Bloating and Pain
Now on second straight day of Diarrhea
Two steps forward five steps back
Sent home with Levofloxacin antibiotics administered through PICC LINE daily
Wound from POWER PORT must be dressed and changed daily
Just living the dream

@ricey

I have had severe diarhhea for 6months just had camera down and MRI scan it showed I have intestinal metastasis in my biopsy does that mean it could be cancerous

Jump to this post

Hello @ricey! I would like to add a “welcome” to Teresa’s. Great to have you join the group.

Sorry to hear you have been having such symptoms as diarrhea for 6 months. Can you tell us a little more about yourself? Have you had any other symptoms?
When do you see your doctor for results?

I’ve got to wait until April for my appointment I have been feeling weak and dizzy but I can’t keep anything in my stomach food just goes right through me I have lost a stone in weight

I am very concerned

Hello @ricey,

I can certainly understand your concern. From what you said I don’t think it is a good idea to wait until April to report these symptoms to your doctor.

Will you call the doctor’s office and at least inform them of this severe diarrhea next week?

Teresa

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

@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

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