Preeetty pissed

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Canaveral
Regular Member


Date Joined Aug 2016
Total Posts : 222
   Posted 6/14/2017 11:25 AM (GMT -6)   
So as most of you know, I'm in clinical remission from UC (though I am increasingly skeptical that this diagnosis might not be correct), and have tested C. Diff free twice in the last two months now, but I am still having the exact. Same. Symptoms I've been having for over a year now. Urgent, watery D.

"It must be IBS," said my GI.

The ONLY treatments that have worked for me are Vancomycin, the first week of Xifaxan, and Augmentin of all things. (Augmentin, which is supposed to wreak havoc on UC patients.) On all of these I was having normal, formed stools within 24 hours. GI brushed off my response to Augmentin as coincidence.

To me, this seems indicative of some kind of bacterial problem. I reached out to my doctor inumerous times over the last month with this information, asking for more extensive stool testing for different bacteria beyond the normal stool panel and C Diff test. He avoided answering my question at all junctures. Kept prescribing IBS meds, none of which are working.

Finally, today I spoke with his physician's assistant. (His preferred method of communication is email -moist of which go unanswered despite numerous follow-ups on my part.)

"Oh, he's an IBD specialist. He doesn't deal with other types of GI problems like bacteria. You'd have to go to someone else to get stool tests for other types of bacteria."

Are. You. KIDDING me.

Over the last six months, you've given me FOUR rounds of Vancomycin, one round of Dificid, performed a fecal transplant on me for C. Diff, and you DON'T DEAL WITH GI BACTERIA? You are THE IBD specialist in the largest hospital in one of the largest cities in the state, and despite my obvious response on antibiotics, you haven't even considered bacteria as being a potential cause because all you care about is IBD? YOUR colonoscopy report says explicitly that 'a chronic infection process cannot be completely ruled out.'

I'm done. Absolutely done. I have an appointment at Mayo July 17th. This is war.

Post Edited (Canaveral) : 6/14/2017 11:29:39 AM (GMT-6)


iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 9555
   Posted 6/14/2017 12:20 PM (GMT -6)   
I hear you, I'd be more than a little peeved myself. Good luck in your war. Have the right general and you might have a decisive victory and win a long lasting peace, and I hope Mayo Clinic is that answer! They're supposed to be among the very best!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 75mgs 6MP, 4.8g Lialda, and rowasa

I swore to myself that once i was off of prednisone that I'd burn both the pills and bottle with great hedonistic enjoyment: booze, food, and dance. And if I ever need a colectomy... ;-)

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3708
   Posted 6/14/2017 3:08 PM (GMT -6)   
The PA may also not have said things just right. The unanswered email is another issue.

But antibiotics manipulate gut microbes as much (or more) than they fight infection. Responding to a anb does not absolutely mean it is an infectious source.

I don't think you can expect doc to become a research scientist vis-a-vie non-c-diff infections. He/she should have referred you to infectious disease specialist at your request.

good luck
11/08: ischemic colitis and scope perf colon. 12cm colon/ileocecal resected. IV antib:sepsis.
01/10: Dx: Mod. UC pancolitis. Rx: Lialda 3x.
02/11: Major flare w/antib:sinus. Rx: 40mg Pred taper. 6mp.
07/11: Histol remiss rt/trans; worse sigmoid. Rx: Rowasa & hydrocort
---
Curr: 1-2 soft-formed stool, no urgency: Lialda 2x, NO PRED, probiotics, Vit-D/C

Canaveral
Regular Member


Date Joined Aug 2016
Total Posts : 222
   Posted 6/14/2017 3:16 PM (GMT -6)   
If I may have a condition that my doctor knows is outside of his realm of expertise, he darn well better own up to it and refer me to the correct doctor himself, instead of evading my questions and flat ignoring my attempts to contact him.
28 years old
Female
Diagnosed UC Sept 2016
Current medications: Remicade, Symax Duotab

Past medications tried: Symax Duotab, Bentyl, Entocort, Asacol, Lialda, prednisone, fecal transplant

WorriedUCer
Regular Member


Date Joined Jul 2014
Total Posts : 276
   Posted 6/14/2017 3:25 PM (GMT -6)   
Interestingly, I also responded positively to Augmentin after I had to take it for something else, and like you antibiotics tend to wreak havoc with me!

FlowersGal
Regular Member


Date Joined Feb 2017
Total Posts : 204
   Posted 6/14/2017 5:15 PM (GMT -6)   
Let us know how it goes at mayo. Which location are you going to?
Partial Colectomy for diverticulitis Sept 2014
UC pancolitis DX March 2016
Apriso .375 g x 4/day,
Canasa & Uceris foam
Supplements: Zinc, L-glutamine, Probiotics: Reuteri perals, VSL #3, Folic Acid, CoQ10, turmeric, boswellia
Started Entyvio Wed., 3/29/17
Constant flares since March 2016 only relieved by Prednisone

Canaveral
Regular Member


Date Joined Aug 2016
Total Posts : 222
   Posted 6/14/2017 6:49 PM (GMT -6)   
I'm going to Jacksonville since it's two hours away. Does anybody have any feedback on doctors there?
28 years old
Female
Diagnosed UC Sept 2016
Current medications: Remicade, Symax Duotab

Past medications tried: Symax Duotab, Bentyl, Entocort, Asacol, Lialda, prednisone, fecal transplant

Blandnuts
Regular Member


Date Joined Apr 2013
Total Posts : 47
   Posted 6/15/2017 3:45 PM (GMT -6)   
Jacksonville Florida? I had a doctor there that I liked who was easy going.

Canaveral
Regular Member


Date Joined Aug 2016
Total Posts : 222
   Posted 6/18/2017 12:55 PM (GMT -6)   
Yep! Which doctor was it? The one I'm seeing is Dr. Picco.
28 years old
Female
Diagnosed UC Sept 2016
Current medications: Remicade, Symax Duotab

Past medications tried: Symax Duotab, Bentyl, Entocort, Asacol, Lialda, prednisone, fecal transplant

Blandnuts
Regular Member


Date Joined Apr 2013
Total Posts : 47
   Posted 6/18/2017 4:47 PM (GMT -6)   
Paul A. Sievert

http://hscj.ufl.edu/directory/bio/1241/paul-sievert/


I had him for ~3 years and then moved. Whenever I brought up anything alternative he listened and would spend time looking up any files he could about it. example-nicotine
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