C Diff with total colectomy and many autoimmune issues?

[itsnotez]

I am a 56 year old newly diagnosed (10 days) and on last day of Flagyl 10 day prescription. Little improvement. C Diff is a result of taking Clindamycin for 5 days due to Perifacial Lymph Nodes. I have been disabled unable to work mostly bedridden for 16 years due to ME/CFS, Crohn's, CRPS, CNS issues, Lupus, Sjogren's, Hashimoto Thyroiditis, Raynaud's....etc etc...
I had a Total Colectomy with ileorectal anastomosis due to my central nervous system paralyzing my large intestine.
I am interested to know if anyone has experienced C Diff with Colectomy and how the outcome or experience may differ from non Colectomy patients.
What I do know is that I am suffering tremendously and feel like I am dying.I feel overwhelmingly much weaker and tired than I already experience with extreme joint pain headache and low blood pressure (86/53). For the last 16 years I have been on constant pain meds and other medications for autoimmune and other issues.
Am I alone in this experience? Should I be looking out for more problems because of my other issues?
So glad to have found this site as not getting any info from dr. other than if I test positive after this medication I will most likely be hospitalized with IV Vancomycin.
Any information or advice would be appreciated!!

[roy]

BIG LOUD ALARM BELLS!!!
IV VANCOMYCIN IS TOTALY USELESS AGAINST C.DIFF.!!!
Oral vancomycin is the treatment or better still Dificid.
Newest guidelines say flagyl should not be used unless vanco is not available.

[itsnotez]

Thank you Roy. Where can I locate these guidelines? My doctor told me that he looked up 2018 guidelines and that Flagyl was the go to for it.

[NanciT]

Hello and Welcome to the site Please read the first thread for all new posters

Sorry you are going through this, we have had one or two posters with a colectomy over the last few years, I am not sure they are still on here. Most will leave once recovered.

What Roy has mentioned is that VANCO IV is not given for CDIFF, generally by mouth. Please review with your GI. There is alot of information online about the treatment with a Vanco Taper and now there is MUCH more on DIficid taper which is what finally cured me.

Sadly Flagyl is still given, most have difficulty with it
NanciT

[georgina]

Your doctor should consult or refer you to a Infectios disease specialist as it seems to me he doesn't know much about CDiff. Vanco should be used only oral for Cdiff , not iv . The only iv drug that can be used (along with oral vanco) is Flagyl but this oral Vanco/ iv Flagyl combo is reserved for most complicated cases.

[itsnotez]

Thank you all for your replies. It is my primary doctor that is currently treating me. If my test results are still positive that I will give to lab tomorrow he then will send me to a Gastro. It is his understanding that a failed flagyl treatment means a hospital admittance with vanco IV, although he has never had a patient test positive for C Diff. I have been his patient for 30 years.
My concern is my Colectomy. Do you all recommend a Gastro or an Infectious dr.? Does this make for a more difficult case to solve? To cure? Is the mortality rate higher for a patient like me? Of course I am frightened. And confused. And have been ill for so many years. This is just taking away any bit of reserves I have.

Thank you again for information.

[roy]

https://www.healio.com/infectious-disea ... py-changes

https://academic.oup.com/cid/advance-ar ... 85/4855916

Read paragraph XXIX

[roy]

Also see an expert.
C.diff is not a disease, it is a normal gut bacteria that causes a disease if it overgrows.
That disease is inflamation in the colon but you do not have one!
Testing positive is NOT the same as having it as a disease.
You need to seek advice from an expert.
In fact the ultimate "cure" for life threatening c.diff is to remove the colon.