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Crohn's Disease Forum » Parents of Kids with IBD » C diff--isnt it wonderful? NOT!!


10-25-2017, 09:40 AM   #1
coolbeans
 
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C diff--isnt it wonderful? NOT!!

Hi everyone!! I haven't posted in a while because we were doing so good. DD gained almost 20 pounds in two months & about an inch in height--WOO HOO!!
Alas all good things have to come to an end when Crohns is involved. We have acquired the lovely c diff & it is a big ball of suck!!!! I have researched the forum but I am having trouble finding any recent posts dealing with it. She is on Flagyl right now for that (been taking since last Friday). She takes Humira (just started 9/20), Imuran, Prilosec, Zyrtec, multivitamin & one probiotic for the CD. She is at home today with terrible belly pain & bloody stool.
Are there any new meds/tips/treatments that I should be asking about?
10-25-2017, 11:16 AM   #2
my little penguin
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Vsl#3 double strength by prescription probiotics
Is supposed to be proven to help cdiff and prevent future occurrences
---
Ds has been on it for years
Most prescription plans will not cover it though
So it's pricey out of pocket
Hugs on the cdiff
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10-25-2017, 11:36 AM   #3
Maya142
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My kiddo has had CDiff twice. It is NOT fun - you're right about that. Honestly, there is not much you can do except wait for the antibiotics to work.

My daughter was put on Vancomycin, not Flagyl, both times. It took about 6-7 days before she felt better. The second time (which was this January), her Crohn's flared because of the CDiff, and she ended up on steroids to get it under control. So watch out for that - if she isn't better after the course of antibiotics, then they need to consider either a different antibiotic or a flare as a possibility.

We used VSL#3 as a probiotic - her GI prescribed it.

CDiff is really infectious - we confined my daughter to one bathroom and no one else used it. You have to use bleach to kill it - CDC has guidelines that you can look up online. Just a note - Clorox wipes do not have bleach in them, we had to buy special medical grade wipes and cleaning products.

Tell her to hang in there!!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
10-25-2017, 11:47 AM   #4
pdx
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I don't have any other advice, but just wanted to say that I'm sorry to hear about the c diff. I hope that the treatment works quickly for her. Glad to hear about the weight and height gains!
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
10-25-2017, 12:22 PM   #5
Jmrogers4
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Been through it once, second the VSL#3, we were given a bunch of samples from the doctor so he only took it for a week after finishing all the antibiotics. That was quite a few years ago and have not had a reoccurrence (knock on wood, salt over the shoulder, etc. etc.)
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
10-25-2017, 01:10 PM   #6
coolbeans
 
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thanks peeps--I sent a message to the doctor's office asking about getting the VSL#3. The nurse sent me some info about C diff--it is some pretty nasty stuff. I bought bleach, bleach and some more bleach to fumigate the bathroom with. DD is still able to eat a little & is still doing the EEN so I am hoping we wont lose too much of our recent progress.
Did your children miss school while they were dealing with this? Do you do anything special about diet or just let them eat what they feel like? I have really been pushing fluids while she has been having so much toilet time but didn't know if bland would be better at soothing her tummy?
10-25-2017, 01:16 PM   #7
Maya142
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Yes, my daughter missed school. It's very infectious - I don't think you can send her to school with it anyway. The school nurse just about had a heart attack when I mentioned to her that M had CDiff - said M couldn't come back to school till she was cleared by her GI.

M felt pretty awful and she happened to have CDiff over Thanksigivng, so she didn't miss that much school.

But I would check with your GI - I'm pretty sure with an active infection, they are supposed to stay home for a while. I just can't remember if it was till the entire abx course was over or just a certain number of days.

In terms of diet, we just let her eat whatever she wanted - which was bland food. She had no appetite and lost 4 or 5 lbs. We did push fluids.

The second time she had CDiff, she got so dehydrated that we ended up in the ER twice for fluids. They wanted to admit her but she refused (she was over 18, so could choose).

We were giving her Pedialyte through her feeding tube but she was going to the bathroom so much that she still got dehydrated and needed fluids.

We used a heating pad for the belly pain.
10-25-2017, 01:18 PM   #8
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I just got over C.diff. I ended up being hospitalized for 9 days. I was on flagyl and vancomycin, and they had to keep increasing the dosage of the vancomycin because I wasnít getting better as quickly as they wanted. I finished a 22 day course of antibiotics on October 4th, and it seems to be gone, or at least Iím praying itís gone and stays gone. If heís not feeling better in a few more days, Iíd call the doctor and see what the next course of action is. Maybe adding vancomycin or just switching to vancomycin all together. Thereís also a newer drug called dificid that seems to be effective at getting rid of c.didf, but itís expensive and you have to fail the other antibiotics before most insurance companies will pay for it.

I stayed home from work before I was hospitalized. I felt really terrible and I donít think I would have been able to sit through work. I guess it depends how he feels and if he thinks heíll be able to make mad rushes to the bathroom in time.

I was on bowel rest for the first few days in the hospital. When I started eating again, I stuck to eggs, chicken and carbs. I tried to stay away from any type of fresh fruit or vegetables, dairy, and anything tomato based.

Hope he starts to feel better soon. C.diff was the absolute worst. Worse than any flare Iíve ever had.
10-25-2017, 01:29 PM   #9
coolbeans
 
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Oh my, they didn't say anything about school & I didn't even ask. I will get with them & see what I need to do about that. I am glad I asked you all. I feel terrible but I honestly didn't know.
10-25-2017, 01:41 PM   #10
Farmwife
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We've been there. Hate cdiff.
I hope she feels better soon.
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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
10-25-2017, 01:50 PM   #11
Jmrogers4
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He had it during the summer so no issues with school but diet was pretty much whatever he would eat. He felt pretty awful but yes lots of bleach it's highly contagious. He used one bathroom in the house and everyone else used the other ones.
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