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Crohn's Disease Forum » General IBD Discussion » Has any one had long term c-diff


04-01-2016, 08:10 AM   #1
deben2102
 
Join Date: Apr 2016
Location: United Kingdom
Has any one had long term c-diff


Sorry I'm very new to this, it's a bit long winded but I will try and be brief.

In November 2014 I was very heavily pregnant and admitted to hospital with food poisoning/ crohns flare where as I had both crohns and gestational diabetes I stayed for 2 weeks until on the 2nd of December I had my beautiful baby boy. A dreadful labour led to another 8 days in hospital but eventually we got home where I became gradually worse, the baby weight fell of at a drastic rate and after months on predisolone and modulin I returned to hospital for bowel rest...

A colonoscopy showed a bit of active crohns and I ended up having my gall bladder out... 6 weeks later I came home. Where I still got worse, sick after food and terrible back pain and tummy ache.. In August my son got took ill and ended up in hospital, and when he came out I went back in only to discover he had salmonella poisoning... After actually (for the first time )testing my stool they found so did I. They treated me for salmonella and I returned home but I was even worse so returned to hospital for more iv fluids and antibiotics only in September to test positive for c-diff....

6 months later .... I still have c-diff .... They tried metronidazole( very allergic) vancomycin 5 times and tapered vancomycin... I had a fecal transplant which we thought had worked but I then tested positive for salmonella yet again which appears to have never gone either..I am now on tpn as I have lost over 4 stone ... Elemental.. Vancomycin .... Tapentadol liquid and tablets... Pregabalin.... Renitadine... Ondansetron....cyclazine.....paracetamol and various vitamins.....

Please can anyone give me any advise?

Had bowel resection nov 2011
Was on azathioprine until May 2016
Currently untreatable for crohns

Last edited by deben2102; 04-01-2016 at 08:35 AM.
04-01-2016, 08:40 AM   #2
lisadc1
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Join Date: May 2014
Location: Kentucky

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Have they not tried Difficid It is the third/final antibiotic...I have had recurrent C-Diff, 4 times in a year and a half. I have tried the flagyl, vanco, vanco taper, and Difficid. My infectious disease dr. says that people can be carriers of it and it reoccurs that way. If I get it again, they say the fecal transplant is the next option. How long were you on the taper? I finished my taper last week..I had issues since the middle of January with this last one. I had flagyl vanco, and difficid all three in hospital and the vanco taper lasted six weeks after I was discharged.
04-01-2016, 08:55 AM   #3
Eridon2002
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Location: Saint Louis, Missouri

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Sorry the hear about all the difficulties you have been having. In terms of the Salmonella, do you think you could be reinfecting yourself or there is a source in your home where you are getting reinfected? It's hard enough dealing with C.Diff alone. From the WHO website: http://www.who.int/mediacentre/factsheets/fs139/en/

Sources and transmission

Salmonella bacteria are widely distributed in domestic and wild animals. They are prevalent in food animals such as poultry, pigs, cattle; and in pets, including cats and dogs, birds and reptiles such as turtles.
Salmonella can pass through the entire food chain from animal feed, primary production, and all the way to households or food-service establishments and institutions.
Salmonellosis in humans is generally contracted through the consumption of contaminated food of animal origin (mainly eggs, meat, poultry and milk), although other foods, including green vegetables contaminated by manure, have been implicated in its transmission.
Person-to-person transmission through the faecal-oral route can also occur.
Human cases also occur where individuals have contact with infected animals, including pets. These infected animals often do not show signs of disease.
04-01-2016, 08:58 AM   #4
LaCali
 
Join Date: Feb 2016
You could try Difficid or have another FMT. I think some people have to have multiple FMT sometimes... I could be wrong. Sorry you are going through all this!
04-01-2016, 10:28 AM   #5
JaimeM
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I had Cdiff between june-Oct last year. Did several doses of vanco. I ended up bleaching the entire house (it's the only thing that kills cdiff) had the fmt and haven't had it since (knocking on wood as I type!) I hope you find relief! it's hard enough with a little one! My baby was 8 months when I got sick. It was really hard on everyone
__________________
Diagnosed Terminal Ileum Crohns 2008
Remicade 6yrs
Had a healthy baby boy 2014
Switched to Cimzia but didn't work 2015
Back to Remicade and added Azathioprine 2016
04-01-2016, 11:08 AM   #6
deben2102
 
Join Date: Apr 2016
Location: United Kingdom
Have they not tried Difficid It is the third/final antibiotic...I have had recurrent C-Diff, 4 times in a year and a half. I have tried the flagyl, vanco, vanco taper, and Difficid. My infectious disease dr. says that people can be carriers of it and it reoccurs that way. If I get it again, they say the fecal transplant is the next option. How long were you on the taper? I finished my taper last week..I had issues since the middle of January with this last one. I had flagyl vanco, and difficid all three in hospital and the vanco taper lasted six weeks after I was discharged.
Hi thank you I tried difficid and on one tablet I projectile vomited and passed out on the bathroom floor ... I have said im happy to try again but they are more interested in my nutrients At the momen and won't colonoscopy until next week... I was in vancomycin taper for 4 weeks but was to poorely with the c diff so they sent me for the fecal transplant ... Not very nice but they thought it worked now they think it didn't im the Only one in my family/ friends who has it and they have all been tested for salmonella and c-diff.. Thank you for your help when do you get re tested?

Last edited by deben2102; 04-01-2016 at 11:30 AM.
04-01-2016, 11:35 AM   #7
deben2102
 
Join Date: Apr 2016
Location: United Kingdom
You could try Difficid or have another FMT. I think some people have to have multiple FMT sometimes... I could be wrong. Sorry you are going through all this!
I was sick on difficid and passed out .... Should have said that on my post sorry
04-01-2016, 11:36 AM   #8
deben2102
 
Join Date: Apr 2016
Location: United Kingdom
I had Cdiff between june-Oct last year. Did several doses of vanco. I ended up bleaching the entire house (it's the only thing that kills cdiff) had the fmt and haven't had it since (knocking on wood as I type!) I hope you find relief! it's hard enough with a little one! My baby was 8 months when I got sick. It was really hard on everyone
Thank you I see him for 2 hours a day I am just lucky to have wonderful parents
04-01-2016, 11:39 AM   #9
deben2102
 
Join Date: Apr 2016
Location: United Kingdom
Have they not tried Difficid It is the third/final antibiotic...I have had recurrent C-Diff, 4 times in a year and a half. I have tried the flagyl, vanco, vanco taper, and Difficid. My infectious disease dr. says that people can be carriers of it and it reoccurs that way. If I get it again, they say the fecal transplant is the next option. How long were you on the taper? I finished my taper last week..I had issues since the middle of January with this last one. I had flagyl vanco, and difficid all three in hospital and the vanco taper lasted six weeks after I was discharged.
Was on the taper for 4 weeks then the fecal transplant but they don't think im reinfecting they think it's just never gone.. No-one else has it they have all been tested and difficid made me sick and pass out.... I need a miracle I think
04-01-2016, 11:40 AM   #10
deben2102
 
Join Date: Apr 2016
Location: United Kingdom
You could try Difficid or have another FMT. I think some people have to have multiple FMT sometimes... I could be wrong. Sorry you are going through all this!
Thank you
04-01-2016, 11:45 AM   #11
deben2102
 
Join Date: Apr 2016
Location: United Kingdom
Sorry the hear about all the difficulties you have been having. In terms of the Salmonella, do you think you could be reinfecting yourself or there is a source in your home where you are getting reinfected? It's hard enough dealing with C.Diff alone. From the WHO website: http://www.who.int/mediacentre/factsheets/fs139/en/

Sources and transmission

Salmonella bacteria are widely distributed in domestic and wild animals. They are prevalent in food animals such as poultry, pigs, cattle; and in pets, including cats and dogs, birds and reptiles such as turtles.
Salmonella can pass through the entire food chain from animal feed, primary production, and all the way to households or food-service establishments and institutions.
Salmonellosis in humans is generally contracted through the consumption of contaminated food of animal origin (mainly eggs, meat, poultry and milk), although other foods, including green vegetables contaminated by manure, have been implicated in its transmission.
Person-to-person transmission through the faecal-oral route can also occur.
Human cases also occur where individuals have contact with infected animals, including pets. These infected animals often do not show signs of disease.
The salmonella is exactly the same strain as it was in August. The micro biologist say I have never got rid of it ... My family have all been tested and they are fine but my little boy had it so he gets tested more frequently now... Im never home very long I seem to be in hospital all the time. Thank you for your help my mum has a dog! May be worth testing him for it!
04-01-2016, 04:41 PM   #12
Eridon2002
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Location: Saint Louis, Missouri

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The salmonella is exactly the same strain as it was in August. The micro biologist say I have never got rid of it ... My family have all been tested and they are fine but my little boy had it so he gets tested more frequently now... Im never home very long I seem to be in hospital all the time. Thank you for your help my mum has a dog! May be worth testing him for it!
Crohn's patients and young children would be more susceptible to Salmonella infection due to their immune system vs. the rest of your family-which could be why they tested negative(their bodies could clear it). I would just recommend bleaching surfaces and washing hands well to make sure you don't reinfect yourself with the C.Diff or the Salmonella. A 2007 Clemson University study found Salmonella can survive up to 4 weeks on surfaces. Try taking probiotics/eating yogurt(plain) to help recolonize your GI tract. You'll likely need more rounds of FMT.
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