IBD and C diff

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jstep813
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IBD and C diff

Postby jstep813 » Thu Jan 10, 2019 3:51 am

Hi, my name is Jennifer 34/F. I am new to this board and have joined in hopes to reach out to people who have been in my shoes.

Here is a quick background of my battle with C diff: last year Sept 2017 I was diagnosed with Ulcerative colitis. Oct 2017, I was hospitalized for an awful UC flare and was put on Cipro to treat a UTI. 24 hrs later, my stool was tested and came back positive for C diff. Drs immediately stopped the cipro and started me on Flagyl. After 24 hrs of no relief, I begged to be put on vancomycin. After 14 days of being on 125 mg vancomycin I thought I was in the clear. Never thought about any kind of C diff relapse.

Fast forward to January 2019, I begin having awful abdominal pain and urgent need to use the bathroom. On my worse, I was going 20 x's a day. I never suspected C diff with it being a year out. But I see my GI Dr and immediately get tested for C diff. I get the dreaded phone call confirming its C diff and immediately start 250 mg vancomycin taper. My Dr said I will be on it for 2 months.

The last few days have been hell for me. I constantly worry about my family getting it bc for 8 days I did not bleach my bathroom after using it. Also I feel defeated, I have read of so many horror stories of people with IBD not having the best success stories. I hope that this isn't what my life has come to, having to constantly worry about my C diff reactivating. Any advice would be greatly appreciated as I feel so down and out.

NanciT
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Re: IBD and C diff

Postby NanciT » Thu Jan 10, 2019 4:55 pm

Hi

Sorry you are going through this and had to find us. The Vanco should work and improve the D within 24/48 hrs. It's not clear how long you have been on it or if symptoms have improved. Your case is more complicated with the history of UC, please make sure you have an excellent GI you are confident in. You may even consider seeing and ID that can work with them.

The other thing I want to mention is to speak with your GI about Dificid. If this is a true relapse and you have been on Vanco, that is what I would do. I would also consider a Dificid taper. With your history of UC, this all needs to be put into the equation.

Hope you feel better soon

NanciT

jstep813
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Re: IBD and C diff

Postby jstep813 » Fri Jan 11, 2019 6:50 am

I have been worried about relapsing again bc it was over a yr after my first bout with c diff! I don't even know how it happened this time around. GI Dr seems to think with my UC and low immune system, the C diff thrived and came back. Mind you, I have been taking Florastor for the last yr so I feel like it was all pointless. I just feel very defeated and unsure I will beat this.

I haven't brought up Dificid but I want to. I really don't want another relapse and I've heard the relapse rate is really low compared to vanco.

Another thing, I've been staying at my sister's in fear of my daughter and husband catching this awful thing. For a week before even knowing it was C diff, I did not bleach our bathroom or shower. Have been kissing my husband and daughter. So I'm stressed they will get it.

roy
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Re: IBD and C diff

Postby roy » Fri Jan 11, 2019 8:13 am

To spread c.diff traces of your poo has to get into someone's mouth.
Even then they have to have a compromised immune system before it becomes a disease.
Kissing does not spread c.diff.

jstep813
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Re: IBD and C diff

Postby jstep813 » Fri Jan 11, 2019 8:36 am

But I haven't been bleaching until now. Any advice on not relapsing a 3rd time?

AllisS
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Re: IBD and C diff

Postby AllisS » Fri Jan 11, 2019 10:28 am

You don't need to bleach your bathroom after each time you use it; waste of time and energy. If it would give you peace of mind, you could wipe down hard surfaces -- countertop, door knob, toilet handle, etc. -- with either a home-made bleach solution (one part bleach to nine parts water) or using the Clorox Germicidal Bleach Wipes, which are only available online (e.g., through Amazon). Make sure you wear disposable gloves when handling bleach products or solutions.

More important for avoiding future infection: continue with thorough handwashing with soap and water after bathroom use, prior to preparing food or eating, and returning home from being outside in the world.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

jstep813
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Re: IBD and C diff

Postby jstep813 » Fri Jan 11, 2019 1:31 pm

I've had people tell me C diff is highly contagious and to bleach everything I touch! I don't have the strength to do that. I've only been bleaching the bathroom toilet, sink and shower. Do I really need to bleach everything I touch and/or lay on?

AllisS
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Re: IBD and C diff

Postby AllisS » Sat Jan 12, 2019 1:36 am

jstep813, I already answered this question, but evidently you weren't reassured. What I wrote earlier wasn't based on what "people" told me, which is where you say you got your information, but rather on what a prominent C. diff specialist at a major Boston hospital said to me when I had C. diff five years ago. I'd initially been advised, by my regular GI doctor's NP, to "sanitize the entire house." Soon after that, I switched my care to the specialist, who dismissed that advice as unnecessary. C. diff is spread by hand-to-mouth contact with fecal matter, not by touch or via an airborne route. If you're observing good hand-washing hygiene -- again, as I outlined earlier -- the risk of spreading C. diff to others is minimal-to-none. If the sheets, furniture, etc., that you're lying or sitting on are not soiled with fecal matter, the risk is zero. If "people" are telling you it's "highly contagious" they are speaking out of ignorance. Maybe you could educate them so they don't continue to believe false information ...
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

jstep813
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Posts: 14
Joined: Thu Jan 10, 2019 12:44 am

Re: IBD and C diff

Postby jstep813 » Sat Jan 12, 2019 8:37 pm

Sorry, I came here for reassurance and advice. I was told about this discussion board in hopes of calming my anxiety and depression. Having UC and c diff isn't fun. Thanks for the advice

MKW
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Re: IBD and C diff

Postby MKW » Sat Jan 12, 2019 9:27 pm

Hi, just want to say there is a good board on Reddit for UC sufferers. I go on there for SIBO and IBS.
I had c Diff 4 times and was cured by a FMT in March 2017.
I have two daughters now 21 and 14.
I was terrified I exposed them. My first doctor did NOT tell me c Diff was contagious and definitely not that it could only be killed by bleach. I sprayed with Lysol and figured that would certainly kill off anything I had!
Once I found out about the ten minutes of bleach at minimally 10%, I have to develop some type of sanitary practices that would not be OCD and time consuming, but reasonable to protect my family.
Here is what I did, and some of it still do.
I only use one bathroom in the house to have BM’s.i keep nothing in that bathroom out in the open; no bath rugs, towels, stuff on the counter, just a bottle of hand soap and trash can by the toilet. I keep the towels outside of the bathroom. I wear vinyl or nitrile glove on the hand I wipe with and throw away when done. I close the lid when I flush. Toss the glove in the trash. I buy bleach wipes off amazon. After flushing i put on another glove and I wipe the seat, lid and handle with a bleach wipe, I spray the inner part of the toilet with a bleach solution. Leave it for ten minutes and flush. I keep the bleach stuff and gloves in the cabinet under the sink.
Lots of detail??? Sorry! But this is how I feel I don’t expose anyone, and it just became habit. I do all this on automatic now like it’s normal routine. I clean that bathroom with a bleach solution once a week, instead of other miscellaneous cleaners.
I still do not wash my laundry with other peoples. And I use white towels that I can wash with bleach.
I have tested pcr negative twice since having the FMT.
But it’s a psychological thing for me. What if I still have spores. I need to feel I am not risking harming the people I love most in the world.


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