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08-07-2014, 08:30 PM   #1
SCAR2003
 
Join Date: May 2014
Location: DFW, Texas

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C-Diff questions

DD has been off of Flagyl for a month and Prednisone for 3 weeks. She has been on 6MP for 11 weeks. Since ending the Pred, her symptoms have been increasing - but they were never completely gone. She had another set of scopes/MRE/VCE a few weeks ago which showed multiple ulcerations in small intestine and lingering ulcers in large bowel, esophagus, and stomach. (We have an appt scheduled 8/18 to discuss possibility of adding Remicade.)

So, last night she calls me to the restroom and she's had very loose, bloody stools. Twice. Her diarrhea was back to "normal" by this morning. I sent pics to the GI nurse. The GI's colleague mentioned that "if I want to pursue, I can collect samples and have her tested for C-Diff." IF I WANT TO PURSUE??? From what I've read, this is not a casual thing. And, she is supposed to go to Camp Oasis on Sunday. She will be devastated if she cannot go. I asked about quickness of test results and if she would be able to go to camp, but have not heard back from nurse.

I need your knowledge. In your non-medical, experience, etc., what do you think?
08-07-2014, 08:46 PM   #2
my little penguin
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Anytime DS has loose stool for more than a few days or bloody loose stool at all
His GI does standard bloodwork and stool tests ( Ova parasite cdiff etc...)
We have done them so much when I turn in one set of specimen cups I ask for replacements so I can just take the samples in when the doc orders it no extra trip to the lab kwim .
I would ask for the script and see what the Gi says.
Good luck
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08-07-2014, 09:01 PM   #3
Maya142
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Same here - M has had bad diarrhea for a while and we just did a whole lot of stool tests. Our GI tests first for infections then if those are negative (M's just came back negative), we do fecal calprotectin.

CDiff usually comes back pretty quickly but ova and parasites took about a week. I hope she's able to go to camp!
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08-07-2014, 11:42 PM   #4
awmom
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Yup, I would have the test done, especially if she is going off to camp. N's GI has also tested him a couple of times when he had bloody D. Once was positive and once was not. Hope she gets better and has a great time.
08-08-2014, 06:37 AM   #5
Johnnysmom
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Have the test done, and ask for the script just in case it's positive. Send it with her to camp and call and let them know if she should start it or not. I would probably call daily to check in with camp nurse just to see how she is doing.

On the 'if you want to pursue note', that drives me nuts too. I find that for some reason Dr.'s are using this lingo more often. I don't know if people with crohn's tend to question or fight their advice so they don't push or what but I would say, 'what do you mean if I want to pursue?, Does the Dr think testing is unnecessary?'
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08-08-2014, 05:25 PM   #6
my little penguin
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We tend to push back with the "if it were your kid what do you recommend ..."
This tends to get better answers .
08-10-2014, 05:04 PM   #7
Patricia56
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There is a quick c. diff test that comes back in 24 hours.

The camp is LIKELY to refuse to take her if she has an active c. diff infection. If you tell them she has been tested but no results yet they may refuse to take her until results are back. If they do take her and she turns up positive my guess is they will send her home.

All that said, typically (but not always) c. diff diarrhea is persistent, smells awful, worsens with time, often brings on fever and belly pain and eventually the child is clearly sick.

Since you're not describing a scenario that fits this very well I would tend to think c. diff is unlikely. Sounds more likely that she is steroid dependent at this point (assuming her symptoms were significantly better while she was on steroids). The fact that she doesn't fit a profile for c. diff doesn't mean she doesn't have it but may explain the doctor's comment.

Sounds like stepping up to a biologic may be needed.
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Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
08-10-2014, 05:08 PM   #8
SupportiveMom
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Does her poo have a distinct smell? Every time D has gotten c diff this nasty smell comes. It is a strong odor. The first time she had c diff & I didn't know what it was I didn't know what that smell was for & just thought it was extra smelly, but once you know the smell you will easily detect c diff again. You can get c diff 1st and the smell comes a few days later, but the smell always comes if treatment isn't started. So it's now Sunday. What did you do? My kid just went to camp Got2Go. Didn't even think about c diff with all the IBD kids. Crossing my fingers she doesn't come back with it. Every time she has gotten c diff she has gotten into a nasty flare ( or had a nasty flare & then got c diff) & ends up in the hospital. C Diff is lousy. Hope your kid doesn't have it!
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08-12-2014, 11:59 AM   #9
SCAR2003
 
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Thanks, all. When I finally got the nurse on the phone, she said it's just protocol. (I guess not having her normal GI tell us that it made me more nervous.) The nurse said not to keep her from camp. So, she is at Camp having a marvelous time, I'm sure! And, I bet the results come back negative.
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