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04-11-2013, 08:25 PM   #1
awmom
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Join Date: Sep 2012
Location: College Station, Texas
C-dif questions!

Sorry to be posting with several threads but the story goes on...and on.
Last week Nico had 2 days with diarrhea and lots of blood in it, so i called the GI and he ordered a stool sample. After adding oatmeal to his diet, the D stopped. A the same time he started taking 6mp as his maintenance med. His BMs were fine, sometimes felt a little urgency but not a big problem, but he started having nausea and loss of appetite.....this I know is due to the 6mp because this has happened before. So today I called the GI to see if he could switch back to remicade (what he had been taking pre surgery), and the doc said Nico had tested positive for C-Dif and was to start Flagyl and thats why he felt no appetite and was nauseous. he Took him off his maintenance meds. Today actually he feels great because he did not take the 6mp last nite and I am so sad he has to start with Flagyl tonight which makes him feel so horrible!

My question is , can he have c dif without diarrhea? Really, his stomach has been doing well since the oatmeal. I do know that c Dif is nothing to take lightly so I am following docs orders. He is anemic, and his stool is kinda dark brown, but not black.

Don't we all have c Dif in our systems?

What is good to give in terms of probiotics....s. boulardi, vsl3??? Any foods?

Wow, any help would be really appreciated. Thanks!
04-11-2013, 10:22 PM   #2
Devynnsmom
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awmom, I have no knowledge about C Dif, but I hope Nico feels better soon! I will be watching this thread about the pro biotics. I am going to start Devynn on them. My dr said he likes Bio K and VSL#3. Apparently you have to order the VSL3 online. I am going to look into it.
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Samantha, AKA Devynn's mom


Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
04-12-2013, 01:20 PM   #3
awmom
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Thanks Devynnsmom, I will also let you know what I find out about Probiotics!
04-12-2013, 06:18 PM   #4
Devynnsmom
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Thank you! The VSL3 is expensive! I looked it up last night.
04-12-2013, 06:35 PM   #5
Farmwife
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Location: Michigan

My Support Groups:
If your in the USA, you might be able to get a script for it.
Our GP wrote one for Grace so we have to get through the process of submitting it to the insurance for coverage. We were warned it might be denied at first but the second or third will be the charm. It's a year long script. Worth it to us!
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
04-12-2013, 09:29 PM   #6
awmom
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Join Date: Sep 2012
Location: College Station, Texas
Thanks.......for the moment I am giving him Florastor because I can give it together with the Fagyl, but I want to keep him on probiotics for a long time after he's done! I have heard that VSL3 is one of the better ones. Funny how none of Nico's docs have ever mentioned probiotics, microbiom, or anything of the sort. If he starts losing weght on the Flagyl I'm going to ask to have a fecal transplant for him. They actually have a FT center at Texas children's so hopefully they can do it. What worries me is that he is due for his remicade treatment next week and we are already at 10 week intervals, so I'm afraid he will stop responding to it if we wait much longer.
04-12-2013, 09:41 PM   #7
Devynnsmom
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Farmwife, I'm in Canada and its not covered here
04-12-2013, 09:51 PM   #8
Kimberly27
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Location: Mendocino County, Northern California

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UCSF suggested VSL#3 also. Reed felt like it was kind of strong. He couldn't tolerate it.

The best price I found was, surprisingly, through the pharmacy at my grocery store.

Good luck.

Kimberly
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"You never know how strong you are until being strong is the only choice you have."

Mom of 17 year old son with Crohn's
2000 mg Pentasa
125 mg. Azathiorpine
Calcium/Vit D
Multi-Vit

Past Meds:
Metronidazole (Flagyl), Ciprofloxacin, Levofloxacin, Xifaxin, Zosyn, Augmentin-ES, VSL#3
04-12-2013, 09:55 PM   #9
Devynnsmom
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Thank you Kimberley, my doc said you have to order online. I called all over today and nobody carried it.
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