# Crohn's with C-Diff Support Group



## Kinsey

when my son with Crohn's was diagnosed with C-diff all procedures for dianostics such as Colonoscopy, upper Gi, etc.. had to be stopped.  Can still take meds.  But can't seem to clear the C-Diff.  And last CT shows he got UC from the C-Diff now too.  What's a mother to do?  Kinsey


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## Kinsey

*Investigating*

Since I Have joined the forum I have recieved a wealth of knowledge and support, I have direction now and don't feel alone anymore with this monkey on my back (rather my son's back).  You know us mother bears.  I will being posting now more on the other groups since this topic goes under another classification, Dave, if you want to switch it somewhere do it.  I have figured out how to navigate around the forum somewhat better now.  Kinsey


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## David

Thank you for starting this support group.  I'll definitely send people to this group 

Something that might be nice if you find time is resources in the first regarding c.diff such as how to clean properly.  Just an idea


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## fodent

I got c-diff as well! I didn't notice i thought i was just having a flare up with my crohns!, Luckily I was put on antibiotics and it cleared! Hope things start to go better with you and your son (hugs) 

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## Daddy119

Hi,

I had the C-Diff adventure 2 years ago after taking IV antibiotics for a wound infection gone bad.  I knew nothing about it then and nobody told me to take Florastor/probiotics during it either.  Took 3 course of antibiotics for the C-Diff with Vancomycin finally doing the trick...but I swear it took a year to get my bowels back in some kind of order.  Every time I get D I get the anxiety about it coming back...  Throw a kidney stone in the middle of the ordeal and it is 4 months I want to forget.  

I took Florastor (2/day) for 6 months before I stopped it.  I now have probiotic yoghurt every day.  Don't know if it helps but it won't hurt.

Hope it works out for your son.  

Good luck,

G


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## CarolinAlaska

You rock that you started this support group!  Very cool.  I hope people see it soon and can join you in this.


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## LittleChloe

Chloe got c diff twice and it made her sicker than crohns ever did. It slowed her progress with Ldn and slowed her weight gain. She's better now but it took a lot of effort.


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## Kinsey

Yeah I did, but somehow I accidently cleared all by groups!!!  You rock!

Took my son Brad to the doctor yesterday, long story short, this dr. thinks that Brad will be clear from the current antibiotics by next week, and even had us schedule the next colonoscopy for April 11th.  Though, we do go get tested next week and if its still there then its a no go.  We shall see!  I've been spending time in the "what's your career, job, "forum" with 723crossroads, (we are at the bottom of forum, check it out if you can!  Kinsey:smile:


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## CarolinAlaska

Thanks for the update.  I hope he is cleared next week and can move on!


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## tlc7376

Hi everyone!! I am a newbie to the whole Crohn's IBD disease. I recently just did a two week stay in the hospital for having C-diff along with the Crohns. Is this something that happens frequently with this disease? I am hoping not seeing as it was extremely painful and very annoying to say the least.


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## blazeking

How do I tell if I have it when I looked up the symtoms and they seem almost exactly like a flare up?


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## Daddy119

Hi,

It can be very similar.  Usually the C-Diff occurs after a course of anitbiotics so if the "flare" happens then, you may suspect it.  Otherwise it is not often to just "get it" out of the blue regardless of having Crohns or not although I have read that having Crohns/Colitis can increase your susceptibility.  Mine came on after antibiotics.  If it is suspected, the only real way is to do a stool test with your Dr or at hospital where they will confirm C-Diff.  They can be quite similar though unfortunately.

G


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## annawato

I caught c diff whilst in hospital. The patients in rooms next to mine had it. Fortunately it cleared with vancomycin but took a while. The only reason I knew I had it was diarrhoea and tummy pains but yes that is just like crohn's or UC. Basically they were keeping an eye on me because it can be spread by spores so is highly contagious in hospital. unlike many bacteria and viruses the spores stay alive for a while when not on a human.


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## crohnscait

I had a really hard time clearing c.diff that I acquired during my first hospitalization for Crohn's. I relapsed 4 times and was on long-term vancomycin, which caused bad headaches. I was finally able to find a doctor who could preform a fecal transplant, and I had not had any further issues with c. diff. It is a rather icky procedure, but I am so glad that I did it. If I get c.diff again, it is going to be my first avenue of treatment. There are a number of c.diff support groups that highlight local doctors for those interested.


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## Spooky1

I get c diff, but I also get rotavirus too.  anyone else?


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## iriechic

I had C.Diff in May.  Treated with Flaygyl, Xifaxan, then fecal transplants.  I wanted fecal transplants to see if it would help with my colitis (plus, rid C.Diff).  I didn't notice a change, but only did 10 FTs.  I was wondering if anyone else had unpleasant symptoms once the C.Diff was gone?  The C.Diff and antibiotics really took a toll on my already inflamed (lymphocytic colitis) intestines.  I am on Entocort for 1 week now but I still have diarrhea and it floats.  I didn't have the floating issue prior to C.Diff.  MY C.Diff PCR test was negative, so I don't think it's C.Diff.  I'm just concerned and wondered if anyone else had strange bathroom habits and symptoms post C.Diff?  I hear it can take quite some time for things to heal post C.Diff. Thanks a million for any insight!!! I'd sincerely appreciate whatever feedback you can offer!


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## Crohnzie Girl

I was jus diagnosed w C Diff last week when I was hospitalized. I knew something wasn't right bc I suffer from constipation not diarrhea. The last time I took an antibiotic was in the summer. It makes scence I guess since I've been feeling I had jus one huge flare for like 3 mths straight. I'm currently back in the hosp bc this C Diff really took a roll on me. It was so painful and the big D was so bad I couldn't work. My surgeon feels that even having the C Diff he will still perform surgery tom. I've suffered for too long and he doesn't seem to mind that I have this infection. I'm currently taking that nasty tasting vancomycin and today was the first day in a long time I had no pain and diarrhea. So maybe its clearing up.


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## Spooky1

It's great to get rid of c-diff I must say, but constipation, is it because of a blockage?  Amazing, you must tell me your secret, lol.  Right, off to the bog!

good luck with the surgery though.  speedy recovery, too.


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## Crohnzie Girl

My Crohns lie in the sigmoid colon area so that part of my intestines becomes very inflammed and scarred. Makes it almost impossible to have a bm. I'd have to take lots of stool softeners and drink laxitive solutions jus to have a bm. It's horrible.


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## Spooky1

Actually I can imagine it to be very painful. I bet you spend a long time on the loo like us with chronic diarrhoea.

Hope all is well with your stay in hospital and surgery and recovery.


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## ronroush7

What are the symptoms of Crohn's with c tiff?


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## Crohnzie Girl

Hey Spooky1 thanks for the well wishes. It's been 6 wks since my surgery and I'm feeling better than ever before!  @ ronroush7 I can tell you that its the most painful experience I've ever had. It was extreme cramps, explosive diarrhea, couldn't eat anything, couldn't leave my bedroom. I'm telling you there's no wondering if you have it or not...you'll know for sure!


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## ronroush7

Being tested for the third time this year.


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## Spooky1

Yes, you definitely know when you've got it.  I'm going to have to do a poo sample sometime soon.  omg, crohns so bad.


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## ronroush7

Two months ago, I was on an antibiotic for an infection in my leg.  I accidentally took two pills at one time instead of one.  It tore my stomach up.  Ever since then,  I have had some cramping on and off.  I have had incontinence with my bowels.  I even threw up once so they are checking me again for c diff.  The thing is that I was tested more than a week ago.  I would have thought that I would hear the results by now.


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## Spooky1

Here in the UK, they wait until they see you again, perhaps two months, before giving results.  Nightmare.


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## carbuncle

I went through a series of cdiff infections, 4-5 that with 3 different hospital stays that culminated in triggering crohns.  Cdiff, for me is usually accompanied by very bloody stools with much pain and spasms.

Cdiff can be difficult to identify as it is anaerobic and is killed by oxygen exposure or air.


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## SugarberryGA

I was diagnosed with C-Diff today. The doctor prescribed Flagyl for 10 days. Should I stay home from work for a few days until the medicine kicks in?


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## ronroush7

In the last year, they have probably tested me six times for c-diff.  It keeps turning up negative.

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## emily_v

Hey everyone! Just wanted to share my experience with C-diff and Crohn's!
I actually got C-Diff from taking an antibiotic that was given to me for a skin lesson I was suffering from. This antibiotic was far too strong for my body and I ended up getting C-diff from that. I ended up in the hospital and was put on Flagyl, was then sent home after a week. Turns out- Im allergic to Flagyl! Came back to the hospital after 1 day, was put on another drug to get rid of the C-diff.. Was sent home after another week. Came back 2 days later because I was still experiencing horrible symptoms. It was the 3rd hospitalization that they put me on the IV antibiotics. When i got my 3rd negative C-Diff stool test, they did a colonoscopy and endoscopy on me and that was when I was diagnosed with severe Crohn's! 
November was sure 1 heck of a month! 

Emily, 17, Ontario, Canada 

Currently taking 150mg of Imuran, daily


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## SugarberryGA

Emily, I'm so sorry you had to go through that!!  Having C.Diff and Crohn's sure makes things more complicated.  I went to see a new gastroenterologist yesterday and am feeling a bit better about things.  He wants to see if I test negative for the C.Diff and if I do, then that means I'm having a Crohn's flare.  It's definitely a process of elimination (no pun intended).   Hope you're feeling better!!


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## emily_v

SugarberryGA said:


> Emily, I'm so sorry you had to go through that!!  Having C.Diff and Crohn's sure makes things more complicated.  I went to see a new gastroenterologist yesterday and am feeling a bit better about things.  He wants to see if I test negative for the C.Diff and if I do, then that means I'm having a Crohn's flare.  It's definitely a process of elimination (no pun intended).   Hope you're feeling better!!


I feel for you! My C-Diff brought out my Crohn's disease. I never knew I had it and I had no signs what so ever before my C-diff!!


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## lsimonson

I'm a Mom of a 25 year old son with Crohn's.  He got c diif March 2013 and was then diagnosed with Crohn's.   He had a horrific time with the predisone and weaned himself off all meds.  He was doing great for many months but recently got  flare up and is really suffering now.  He's now on 6mp - 50 mg, sulfasalazine - 500mg 2 x a day, and endicort  3mg.    He's not been able to work and barely get off the couch for 5 days now.

We are at a loss of what to do!  /any suggestions on diet?
How about fecal transplants?  We've read about a lot of success.  We are anxious to find a natural path rather the the continuos onslaught of drugs the doctors insist upon.


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## Searchingforhealth

Isimonson,FMT is a good option! There is a Facebook group that discusses this topic extensively. Also, has he tried low dose naltraxone (LDN). There is info on this forum and yahoo groups dedicated to giving you the research. Also lots of vitamin D is good for IBD.  Has he explored the use of  cannabinol with high CBD. I understand NY just made it legal for medicinal use. I keep reading everything I can that is being researched on potential treatments. Hoping he finds the right path to healing!


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## SugarberryGA

Isimonson, how is your son doing on 6MP?  I met with my doctor yesterday and he wants me to start on it next week.  Thanks.


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## lsimonson

I think it's too early to tell.  He doesn't seem like he's improving at all!  This is very scary as your just taking the Dr's word for it and then your all kinds of things with no real hope of geting better - just masking the sumptoms


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## ronroush7

Last night, my wife said she could smell my bm.  I have heard that sometimes that can be a symptom of c-diff.

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## SugarberryGA

I'm happy to report that I am C.Diff-free!  I was recently tested and tested negative.  I hope all of you get the same result the next time you're tested.  

Ronroush7, the smell is AWFUL!  It's like nothing I've ever smelled and hope to never again.  

Word to the wise... while you're suffering with C.Diff, buy a tube of Boudreaux's Butt Paste.  Your butt will be happy that you did. 

http://www.drugstore.com/products/p...yyEpSxOxB0zXEO40rPSYLOd28UN4b2GfRQaApAv8P8HAQ


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## ronroush7

That's terrific news.

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## Joleen23

Glad I found this support group  I have had Cdiff 3 years ago whilst in hospital , it cleared up quickly, I recently (may) had some antibiotics because of my excema becoming infected which I turn brough C-diff back into my life  was hospitalized in June with it, now July and had a few courses of metronidazole and have had 2 negative stool samples , my only problems is , the minute I finish a course of antibiotics the symptoms start again (explosive D - too the point that I'm having accidents , nausea, fever) my doctor isn't being massively helpful , there is another antiobiotic that they can try but he said it's very strong so not yet. I've been off work for 3 weeks now (I work in healthcare so their very strict about working with this condition) am very fed up now , I just want to be well again


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## Searchingforhealth

Joleen23, have you thought about doing a FMT? If the GI isn't responsive find a healthy donor, have him tested for hepB, HIV etc and do it yourself. This really helped get rid of my daughter's CDif. It may also help your colitis symptoms.


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## Joleen23

My GI is normally pretty good when you can get hold of him , it's my regular doctor that's being unhelpful , I've heard of FMT , I may try again to get hold of my GI and see what he thinks. I live in the Isle of Man (very small island in the UK) a lot if treatments don't get provided at out hospital , it's a bit behind times , a lot of our surgery a and such have to travel to mainland uk for treatment. I have an appt with my GI in about 2 weeks anyways so if I can hold out till then maybe he'll discuss it with me. Thankyou


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## Spooky1

Must agree, Joleen.  Down here in Cornwall the hospitals need to save money and therefore not spend it on us.  I have been looking for a clinic that will do this cheaper than the somewhat expensive Taymount clinic.  Believe it or not it seems getting it done in Australia could work out cheaper than the British clinic.  I'm not sure the Taymount have medically qualified staff.  Read up on them before approaching.  But it is expensive.
Good luck with whatever treatment you get.


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## pink&green

Just got a call from hubby GI(nurse) test came back positive for C-Diff he just got out of the hospital from kidney surgery. This is his second bout with C-Diff (2012).


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## ronroush7

I am sorry, pink&green.  Sending prayers.  To all,  is it possible to have c-diff and it not show up on the test?

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## Ann Morgan

I am so pissed off. Here is my story. I started getting diarrhea in 1997. Was prescried Questran by my PCP. I had a lower G I and Flexible Sigmoidoscopy by Internal Medicine Doctors. Diagnosis : IBS ?  Went to GI doctor in 2006. Diagnosed with Ulcerative Colitis. Took Asacol then Lialda, plus the Questran. Was doing okay. May 2014, drastic changes in my UC. Now I was severely constipated !  New GI doctor did a colonoscopy, said the result was "normal". New doctor said to discontinue all of my colon medications !  SAY WHAT. Never had a doctor tell me that. I cannot quit taking the Questran EVER because if I do I get very sick with yellow-watery diarrhea. Then I was informed by that I could keep taking the Questran "as needed". I had been taking 2 packets a day for years. Now with the new constipation issues, taking two a day made the constipation worse. Tried one a day and I was having success in keeping my bowels in order ( not the terrible diarrhea I had for years and not the severe constipation  I started getting in May 2014. )  

So, now, here is the part that really pissed me off........I got sick recently. Symptoms: sore throat ( NOT STREP), laryngitis ( eventually I could not speak at all and I had to use paper and pen to communicate ), cough, blowing my nose with green snot/mucus/phlegm. I have had laryngitis many times over the years, but it was just sore throat then LOSS of voice. ( Yes, I still have my tonsils. )  I went to my PCP about the green snot ( which means infection, right ?  I had been seeing this PCP for 7 months, gave him a detailed list of my medications/ health conditions / surgeries when I first met him.
So on November 17th, 2014 he prescribed me an antibiotic. I took the first antibiotic for 7 days and had terrible diarrhea for 5 of those days. I got prescribed a different antibiotic. I took that one for 3 days. STILL terrible diarrhea. So after ten days of antibiotics I just did not take anymore because of the terrible diarrhea. . My first prescription was for 7 days and my second one was for 7 days. I did not  call my PCP after I quit taking the second antibiotic. I wrote something on this site about my antibiotic symptoms and the folks told me that antibiotics can be bad for my Ulcerative Colitis and that I should always let my doctor (s) know about my UC when antibiotics are involved. My PCP knew I had UC  !!!!  I was sick for three weeks with the throat/laryngitis/cough/green snot/even wore a surgical mask for a few days so that I would not spread my germs and so I would not acquire any new germs. NOW I am stuck with this new diarrhea because my doctor gave me antibiotics !!!!!!!  

I am now back to taking 2 Questran Packets a day and taking the last of my Lialda pills from my very last refill. I am so mad about this new diarrhea. I actually almost had a diarrhea accident the other day at the Post Office. There are no bathrooms in the Post Office. Had to hop in my vehicle and drive real fast over to a Subway restaurant. So, here I am now, with diarrhea caused by antibiotics and I don' t know how long it will last. I don't like the GI doctor that I went to this year ( I had new health insurance ). So, I will have to find a new GI doctor in 2015 and start all over again
 (Sigh).

I am going out of town over Christmas time and I am mad that now I have this new diarrhea. I will be visiting my sister and her family. She knows about my colon disease but she doesn't understand it. She knows it causes me diarrhea. She is a very nice person but she doesn't understand that when I say I need to go to the bathroom that I mean RIGHT NOW.....not 10 seconds from now. Well, she has a brand new car, so let's see how fast she starts to drive it when I am in her car and I say " I have to have a bowel movement and I need a bathroom SOON !!!!".  

Tell me how long I will have this diarrhea caused by antibiotics ? I looked it up online and did not like what I read. Should I call my PCP on Monday and tell him that I am still having the diarrhea even though I am no longer taking the antibiotics ? I can't call my GI doctor that I have right now because he is an idiot.

Thanks for listening !!!!!!!!  I have an MRI on my kidneys tomorrow, I have a 1cm renal cyst. I hope I don't feel like having diarrhea while in the MRI tube. Ahhhhhhhhhh.

PS: If you have ever read any of my posts before, you know that they usually start out as a short story and end up as a novel. :-0


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## Robertsba92

I was diagnosed with Crohn's disease in 2011. I was a sophomore in college. I am now 22 years old and have had cdiff 4 times in the last 16 months. If I'm not battling the cdiff I am battling my Crohn's disease. I was forced to take a medical withdrawal from college when my disease was not under control. In my last cdiff episode I was hospitalized 3 times and was very close to having a fecal transplant. Has anyone had this before? The reason I have joined this website though is because I would love to find other people who are battling both cdiff and Crohn's. Yesterday I went for my 7th Remicade treatment. At about an hour in I started sweating, then wheezing. The next thing I knew I stopped breathing, my throat shut, my entire body turned blood red and my blood pressure a plummeted. The nurse yelled "code blue and were losing her" I have never had such a traumatic and deathly experience before in my entire life. I thought I was going to die. Luckily they found someone who could help me and the ambulance arrived and I'm okay. Sometimes I feel there is just no hope for me because I can never catch a break. If I'm not battling my worst episode of cdiff im about to die from my Crohn's treatment. Has anyone had a reaction like this after 7 infusions?


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## renaecihacek

My father is in the hospital and c diff test came back positive.  He has had 3 bouts of c diff already and I am pushing for the fecal transplant.  He is scared and depressed and the doctors are going to release him tomorrow.  The GI's that he is seeing do not perform the fecal transplant and the Mayo clinic will not take Bluecross Blueshield.  He is having horrible cramps and having too many accidents.  He is now 115 lbs and is gagging on food.  What can I do??


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## lookame

I just had a stint of c-diff about a month and a half ago. A week ago had a colons copy since my GI felt I had 2 issues going on (I was in a flare and I had c-diff). I got c-diff  out of the blue. Its possible I could have had it from when I gave birth 7 months ago and it just slowly got worse until last month but it seems unlikely.

Anyway my colon shows extensive pancolitis and bleeding ulcers again. I'm looking at a surgical consult and I'm waiting on biopsy results to see if i still have underlying infection. I'm curious how long it usually takes for your colon to heal after c-diff? Does anyone know?


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## Ann Morgan

My old GI was not on my Insurance plan last year
 Went to a new GI. I did not like him. I had a normal colonoscopy and was told to discontinue all of my colon meds.

Fast forward to today. I saw my old GI today because I wanted his opinion on some things from last year. Old GI is a great doctor. He said to go back on the Lialda and I should always take it. I am also continuing my Questran. He wants a stool sample to check for c-diff. He is not on my Ins plan. I brought his paperwork/instructions to my PCP. PCP will see me on March 31st. Then PCP will order the c-diff test and my Ins plan should cover it.

I DON'T KNOW WHAT C-DIFF IS !!!!!!!


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## Spooky1

there is a whole thread on it on here.  So many Crohnies suffer with it.  I've had it numerous times.  Is bad diarrhoea and sickness.   Google c-difficile (spelling might be wrong).  It's hard work to cope with when you get it with crohns or colitis, and I think I've picked mine up from gastro departments or the doctors.

Good luck with the tests Ann.


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## Ann Morgan

I have Ulcerative Colitis, not Crohns. I think my doctor just wants to make sure I don't have the c-diff just to be on the safe side ?   I spoke to a lady today that said if a person has c-diff that they have to be hospitalized !


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## Spooky1

Hi Ann, I must say I have never been hospitalised for C-diff, even with Crohns.  Think they don't want us giving it to other patients.  Could be the NHS though, no money to spend on patients.


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## lookame

I don't think you always require hospitalization if you have c-diff, only if you require iv fluids. I did a 10 day coarse of Flagyl at home and didn't go to the hospital...though it was pretty painful and I had a fever of 102...probably should have gone to the er...


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## Ann Morgan

Yeah, I always panic about everything and go to the ER!  I have been trying to control this obsession with the ER. There have been a few times over the years that I went to an Urgent Care Clinic or waited to go to my Primary Care Physician when I really SHOULD HAVE gone to the ER!  Ugh. 

Thanks for all of the information.: - )


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## Ann Morgan

okay, on the internet it says there are three different kind of lab tests that they can use to test for c-diff.  which tests have your doctors used ?  I would like to know which is the best and most common and accurate test for the lab to use before I see my primary care doctor on march 31st. thanks for your help.  I am probably worrying about nothing, but I am glad that my old gastroenterologist is going to have me tested anyhow.


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## Ann Morgan

I saw my old Gastroenterologist, whom I trust, recently. I talked to him about some things. After our conversation he recommended a c-diff test. He is not on my Health Insurance Plan, so he wrote out a paper for me to bring to my Primary Care Physician. I saw my Primary Care Physician today. My PCP ordered the c-diff test. Today I had to provide the lab with a stool sample. I don't know which c-diff test they are going to use or how long it will take to get the results. I saw a new Gastroenterologist last year and I don't like him, so I just paid cash for one visit to my old Gastroenterologist recently.
Okay, does anyone else get grossed out by doing this stool sample thing !  I did !


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## peluchde

Hate it!  I even have the lab lose it once and had to repeat the test!  Recently had to check stool constantly after a pillcam was stuck for 42 days.  Makes me hate these bodily functions!


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## Ann Morgan

I could NEVER talk to my sister about poop. She just tries to change the subject. Unfortunately my Ulcerative Colitis is a part of my everyday life. Did I have diarrhea today ? How many times ? Did I cramp up ? Did I have to run to the bathroom today ?  Did I have constipation today ? Was my Acid Reflux acting up today ? And I always worry about fistulas and abscesses coming back.  I would rather have a broken leg than have an Anal Fistula again or a Rectal Abscess.   ????


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## Ann Morgan

I have c-diff.
I gave a stool sample to the Lab just yesterday.
I received a phone call tonight, after hours, from my doctors office.
I am very sad.
I honestly thought I would just get a letter in the mail a couple of weeks from now telling me that everything was OK. 
Boy, was I wrong.


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## Ann Morgan

Why do I share my feelings and my life with my sister. I told her about my c-diff in an e-mail to her and she said "keep me posted" and "maybe you will feel better".  I sent her the c-diff article from the Mayo Clinic website. I bet she did not even read it. Why am I so stupid. I am tired.
Good Night.


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## Gra

You are looking for support, for someone to care.  We care.

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## Ann Morgan

I just started Flagyl this morning. 
Hope you have a good Easter weekend.


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## Ann Morgan

I just found out I have c-diff a few days ago and my PCP put me on Flagyl until I can see my new Gastroenterologist on April 9th.

Since I found out I had the c-diff the only toilet I have used is my own in my apartment.
I am infectious. I am disabled so I have just been staying at home because of the c-diff.

What happens if I am at the doctors office and I have to have a bowel movement and I am infectious !!!!!!!!!!!!     The whole restroom would have to be sanitized !!!!!!!
I don't think I can drive across town, fill out paperwork, have my appointment, and drive back to my apartment without using a restroom. 

I need answers : - 0


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## Ann Morgan

Ok. I just started to feel wierd and nauseous and then I looked at my pupils and they look larger that normal. Is this a side effect of Flagyl ?


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## Ann Morgan

These stories don't give me much hope that my c-diff is going to go away with just a ten day course of Flagyl.  I had a normal colonoscopy in August 2014. But then took some antibiotics in November 2014. I had a stool sample lab test on March 31st, 2015. Maybe I have had the c-diff since last year ?  I started the Flagyl on April 4th, 2015. I am really not looking forward to my new GI appointment tomorrow. Thanks for listening. I have written a lot this week because I am depressed about the c-diff. I have so many other health issues that I don't know if I can handle one more. Good Night.


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## Ann Morgan

Ok. I have to wait until tomorrow night for my Vancomycin. I get 56 pills, a 2 week supply and it will cost me $405.00 and I HAVE health insurance.

The more I read about the c-diff on the Internet the more confused and frustrated I am getting. Am I dying ?  Is this a big deal ? If it is a big deal why did I have to wait for a week to see a Gastroenterologist  and then another 5 days for the Vancomycin. I picked up a copy of my lab stool test and that is confusing too. After 2 weeks and $405.00 how is my Gastroenterologist going to tell if I am "cured" ????  I cannot take my Questran while taking the Vancomycin. If I don't take my Questran I have very horrible diarrhea. I have been on the Questran for several years now. If I have to continue antibiotics after the 2 week period then it is going to start costing me a fortune.

These doctors are confusing me and don't tell me anything ( like your stool sample should not be over 2 hours old or the test results can come out wrong?)  Doctors have not given me any print-outs about what c-diff is, about making sure everything is sanitized, giving c-diff to others, re-infecting myself, am I gonna die, is this a big deal, blah, blah, blah. I give up. I want to be informed and I am reading as much as I can so that I can be a responsible patient/person. Even I had to call my Pharmacy to double check to see if they got the prescription/final approval. At first, tonight, they told me they did not get it but then 2 minutes later they said they found it. Why do I have to do the work for other people. 

Good Night.   I have a headache now.


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## Crohn2357

A very informative article about C. diff. infection: 
Clostridium difficile outbreaks: prevention and treatment strategies
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3401971/ 

From the article:



> The life cycle of C. difficile begins in the spore form. These spores are easily transmitted as they are resistant to heat, acid, and antibiotics. The spores can remain viable for months outside of the human body. In the hospital, they can be found on bedding, furniture, medical equipment, as well as on the skin and jewelry of caregivers.8 Once ingested, the spores pass through the upper digestive tract into the intestines where they can germinate and colonize the colon. A study showed that 21% of patients receiving antibiotics and admitted to a general medical ward were colonized by this bacterium.9 Healthy individuals are usually protected from CDI by the normal bacterial flora of the gut, which resists C. difficile’s colonization and growth. Disruption of the normal microflora by antibiotics allows C. difficile to proliferate, produce toxins, and cause disease.10 C. difficile induces diarrhea and colitis through the release of two protein exotoxins, toxin A and toxin B. Greater than 60% of the population has serum and colonic antibody responses to these toxins.11,12 Low or absent concentrations of serum IgG antibody against C. difficile toxins has been shown to confer a greater risk of CDI among hospitalized patients who become colonized by this bacterium.13 Toxigenic C. difficile can be identified in more than 95% of pseudomembranous colitis cases and in 15%–25% of antibiotic-associated diarrhea cases.14,15
> ---------
> --------
> The role of probiotics in the prevention of C. difficile remains unclear.60,61 There are many studies in the literature regarding probiotics in the prevention of antibiotic-associated diarrhea, but fewer studies looking at probiotics in the prevention of CDI. In 2004, Plummer et al reported a double-blind, placebo-controlled trial examining the role of probiotics (Lactobacillus and Bifidobacterium) in the prevention of CDI.62 In this study, 150 consecutive patients receiving antibiotic therapy were randomized to receiving the probiotic or placebo. The results showed that, on the basis of developing diarrhea, only 2.9% of stool samples in the probiotic group were positive for C. difficile-associated toxins versus 7.25% in the placebo-controlled group. Despite this finding, the total number of patients who tested positive for C. difficile was actually higher in the probiotic group (n = 11) than in the placebo group (n = 9), so the effect of the probiotic in this study is uncertain. S. boulardii does not appear to be effective in primary prevention of CDI.33,63 At this time, there is insufficient evidence to support the widespread use of probiotics for the primary prevention of CDI. Larger randomized control trials are needed to support its use.


----------



## Ann Morgan

Thank U.


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## Crohnsveteran

I am so glad I found this support group.  I am new and I just asked in my story what the connection between Cdiff and Crohn's is.


----------



## Ann Morgan

I was diagnosed with C-diff in April.
My new Gastroenterologist prescribed me Vancimycin, 4 times a day, for 14 days.
I finished my medicine and saw him for a follow up.
He is satisfied with my C-diff treatment.
He said that I do not have to return to see him unless I am having problems with my symptoms.
My Gastroenterologist did not have me give another stool sample after my Vancomycin to make sure the C-diff is really gone and that sort of bothers me.
What do you guys think ?
Should I ask for another stool sample test to make sure I really don't have the C-diff anymore ?  
I would really like to be tested again because I suffer from Anxiety and I know that I am going to continue to worry until I see the proof that I no longer have the C-diff.
Any replies would be greatly appreciated.
Thanks !
PS: If you want to know my whole story, I have a thousand long posts on here that describe my C-diff story. : - )
Thanks for listening.


----------



## Ann Morgan

PSS: I started to take the Culturelle probiotics once a day. I was having terrible air/gas for several days. I have never had gas smell so bad......it was nasty !   Is this a side effect from the Culturelle ?  I read the label and it does say that I can have gas from the Culturelle but it will eventually go away.  But the label, of course, doesn't say how long it will take for the air/nasty gas to go away. One week. Two months. What ?

Good Night.


----------



## peluchde

Ann, you will know when the C-Diff is gone.  Stools are a different color, smell changes, pain is gone, and you can leave the bathroom.  Hang in there!  Took me, a while and lots of meds, but it's gone.  I did give another sample.


----------



## Ann Morgan

peluchde said:


> Ann, you will know when the C-Diff is gone.  Stools are a different color, smell changes, pain is gone, and you can leave the bathroom.  Hang in there!  Took me, a while and lots of meds, but it's gone.  I did give another sample.


Thank You for your response. I will wait a couple of weeks and then if I still feel uncomfortable about not being re-tested I can always call my Gastroenterologist and ask him to re-test me. I was not really having any crazy symptoms before I got tested with the C-diff on March 31st, just the diarrhea (?).  But I have had diarrhea for many years.


----------



## Ann Morgan

Joleen23 said:


> Glad I found this support group  I have had Cdiff 3 years ago whilst in hospital , it cleared up quickly, I recently (may) had some antibiotics because of my excema becoming infected which I turn brough C-diff back into my life  was hospitalized in June with it, now July and had a few courses of metronidazole and have had 2 negative stool samples , my only problems is , the minute I finish a course of antibiotics the symptoms start again (explosive D - too the point that I'm having accidents , nausea, fever) my doctor isn't being massively helpful , there is another antiobiotic that they can try but he said it's very strong so not yet. I've been off work for 3 weeks now (I work in healthcare so their very strict about working with this condition) am very fed up now , I just want to be well again


My PCP gave me Flagyl and I had diarrhea every day that I was on it.....six days !   My new Gastroenterologist prescribed me Vancomycin. The Vancomycin had to be Authorized by my Health Insurance Company before they would let the Pharmacy fill my Vancomycin prescription. PLUS, it was very expensive for me, even though my Insurance Company paid 67 percent of the cost. I paid 33 percent of the cost.......$405.22....for a two week supply ( four pills a day for fourteen days ).  I had to take it, so I paid the price.


----------



## Ann Morgan

renaecihacek said:


> My father is in the hospital and c diff test came back positive.  He has had 3 bouts of c diff already and I am pushing for the fecal transplant.  He is scared and depressed and the doctors are going to release him tomorrow.  The GI's that he is seeing do not perform the fecal transplant and the Mayo clinic will not take Bluecross Blueshield.  He is having horrible cramps and having too many accidents.  He is now 115 lbs and is gagging on food.  What can I do??


Do you mean the Mayo Clinic in Minnesota or Arizona ?   Insurance companies suck.  I know that my Insurance Company helps me a lot ( there was a time when I had NO health insurance ) but the cost the patient has to pay now-a-days is getting higher and higher. Not to mention that stupid "coverage gap" for my prescription medications !    Take Care and keep sharing with us. I would like to know more about FMT too.


----------



## Ann Morgan

It is me again.  I finished my vancomycin on april 29. Saw my doctor on april 30. Based on our conversation he said he was satisfied with my vancomycin c-diff treatment. He did not re-test me. For the last four days i have been keeping track of my bowel activity, just so i have some sort of record on how i am feeling since finishing the vancomycin. I am very uncomfortable that i was not re-tested and i won't be able to feel comfortable until i get re-tested. How could i get rid of the c-diff in just two weeks ?  I am having gas, air, loose bowels, smelly bowel movements, indigestion/heartburn, gurgling, bloating. Does the c-diff make your bowel movements smell really bad ?  Or does the vancomycin make it smell bad ?   Or is my new probiotic making my bm's smell real bad ? I have bad smelling gas as well. I am going to wait until monday and then i think i am going to call my doctor and ask him to re-test me. One day i had 6 bowel movements and was very miserable. Today i only had three little bm's but that is because i hardly ate anything yesterday. Today the only solid food i had was my rice/milk/cinnamon and sugar thing and a few crackers with a little cheese. I am hungry but then another part of me is not hungry....huh ?  I had better go to bed now.......too many worries.


----------



## Ann Morgan

It is May 11th. The other day I called my Gastroenterologist office. I wanted to ask my doctor again if I should be re-tested for my C-diff. The office gal took down my information, she talked to the doctor, then she called me back. Gastroenterologist still says I don't need to be re-tested after having my 14 day Vancomycin antibiotic treatment. I am going to call my PCP tomorrow to see what HE thinks about me being re-tested. I have read every post here and did not recall anyone getting rid of their C-diff after one course of treatment. I have had diarrhea for years due to my Ulcerative Colitis. I have been staying home since I got diagnosed on April 1st ( except to the doctor. ) I do not want to infect anyone. I know that I write on here constantly, but that is because this C-diff is something new to me and also in the past I have not been proactive in educating myself about my different health issues ( I just did what the doctors told me to do with no questions).

Have a great week. : - )


----------



## Spooky1

I have never been retested for C-Diff.  I would think that they are very sure of the efficacy of medications for this, otherwise they would ask everyone back to be retested.  No point in half treating a patient.


----------



## Ann Morgan

Spooky1 said:


> I have never been retested for C-Diff.  I would think that they are very sure of the efficacy of medications for this, otherwise they would ask everyone back to be retested.  No point in half treating a patient.


Thank you for your input.
I just want to get my life back together right now.
I am disabled, so I don't go to a job, but I was doing
something on a regular weekly basis before I got the
C-diff. Now that my Gastroenterologist says that 
I am okay, then I can resume my activities now.

I suffer from Major Depression and I have been
at home for six weeks and I think being alone for
6 weeks is getting to me. Hopefully this Monday
I will be socializing several days a week again. I 
could not be around the facility/program that I go
to because I was infectious with the C-diff.

Lots of activity and craziness at my apartment
complex too now, so I HAVE to get away from this
place more often !  Thanks for listening. Weather is
great here now.   : - )


----------



## Crohn2357

Ann Morgan said:


> Does the c-diff make your bowel movements smell really bad ? Or does the vancomycin make it smell bad ? Or is my new probiotic making my bm's smell real bad ?


It is most probably clostridium difficile.


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## Ann Morgan

Can C-diff come back ? And if it does is it worse than the first time around ? After having it in April I wash my hands even more than I ever did before ! I am more conscious about cleanliness and germs and cross-contamination and all that.
Good Night for now.


----------



## rru

Hey Emily!
I am really new to Crohns as well and your story resonates with mine. I got C-Diff from an antibiotic and then did a colonoscopy and got diagnosed with crohns thereafter. How are you doing on the Imuran?


----------



## rru

Hey everyone,

I am very new to Crohn's, so new that I am still in the stages of denial. I first had C-Diff did the colonoscopy and was diagnosed with Crohns thereafter. I desperatly miss my old life where i could drink two coffees a day, pizza, dessert, and still go out drinking that night. Crohns feels like its slowing down my life, I am used to a high paced life. Not being able to consume what I want has brought a negative effect on my once so optimistic mood. Anyways, I was just wondering if anyone had any tips on how they deal with this.

Thanks


----------



## heartsnstars4e

In the past 6 months I have had c diff.  Diverticulosis ( hospitalized)  Now I was just diagnosed with Crohns.  My insides are a total mess.  I still have the c diff too. I have been on and off vancomycin since last december


----------



## lookame

I have c-diff again ugh


----------



## peluchde

So sorry to hear this.  It's one of my fears.  Hang in there!


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## Spooky1

I always get a tad paranoid with loo's in the gastroenterology dept.  I swear every time I visit I end up with c-diff or rotavirus or norovirus and the like.


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## lookame

I think I got my first infection from the hospital after I had my baby. Im used to passing blood as part of having crohns. I also had several infections after having her (mastitis, uterine infection ect) One day I developed a 102 degree fever and my left side starting really hurting and then I got the diagnosis of cdiff. This time I was seeing a new GI so he ran a bunch of tests as a new patient thing and bam...cdiff not more than 6 months after my first infection.

Still not sure how I got this infection or even how I got my first infection...or even how to get rid of this stupid infection..m


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## Spooky1

I think any loo in a medical place is a bad idea for us Crohnies, but what are we to do.  Try not going to the loo, lol.  C-diff does seem to come back though.


----------



## Molly-Baby

Hi, all, so glad I found this support group! I've learnt so much from others' posts. You have all been so helpful I thought I'd share some of my adventures.

I'm late 50's female just diagnosed with Crohn's earlier this year. I had my sigmoid colon removed due to a stricture this summer. Was on Flagyl for 3 months.

Mid-Oct developed severe diarrhea (around 20 times a day) with a lot of pain. Didn't go to emergency :ybatty: as I thought it was a Crohn's flare, which usually improves over time, and I was having a colonoscopy early Nov. 

Fast forward to early Nov, I now have a C. Difficile infection. Was prescribed Flagyl for 2 weeks. I have an allergy to Vancomycin. My diarrhea has now subsided.

I will be getting tested for C. Difficile in late Nov. to ensure the infection is gone. Then further testing/colonoscopy for recurrent Crohn's.

My specialist has also told me that C. Difficile mimics Crohn's, which is why another colonoscopy once the C. Difficile is gone.

Hope this helps?


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## ronroush7

Welcome to the group.  I hope the best for you .


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## Molly-Baby

Thanks. I see you've also had problems . Keep you posted.


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## ronroush7

Thanks.  I have had my ups and downs.


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## Molly-Baby

Ref: Flagyl nausea

**Please consult with your doctor before taking any medications **

Flagyl is known to cause nausea. I was prescribed Metoclopramide 10 mg (trade name: Metonia) to deal with the nausea by the surgeon who performed the bowel resection. This has worked for me.

My GI specialist said Gravol is safe for me to use and should combat the nausea with my  current Flagyl. I haven't taken Gravol yet, but I will post once I do.


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## Molly-Baby

Hi, ronrush7, I have ups and downs too.


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## ronroush7

Molly-Baby said:


> Ref: Flagyl nausea
> 
> **Please consult with your doctor before taking any medications **
> 
> Flagyl is known to cause nausea. I was prescribed Metoclopramide 10 mg (trade name: Metonia) to deal with the nausea by the surgeon who performed the bowel resection. This has worked for me.
> 
> My GI specialist said Gravol is safe for me to use and should combat the nausea with my  current Flagyl. I haven't taken Gravol yet, but I will post once I do.


Flagyl caused numbness in my hands.


----------



## Molly-Baby

Ref: Flagyl nausea

** Please consult with your physician before taking any medication**

Hi, all, I've tried Gravol (x 2) to reduce the nausea caused by Flagyl. The Metonia works better.


----------



## ronroush7

emily_v said:


> Hey everyone! Just wanted to share my experience with C-diff and Crohn's!
> I actually got C-Diff from taking an antibiotic that was given to me for a skin lesson I was suffering from. This antibiotic was far too strong for my body and I ended up getting C-diff from that. I ended up in the hospital and was put on Flagyl, was then sent home after a week. Turns out- Im allergic to Flagyl! Came back to the hospital after 1 day, was put on another drug to get rid of the C-diff.. Was sent home after another week. Came back 2 days later because I was still experiencing horrible symptoms. It was the 3rd hospitalization that they put me on the IV antibiotics. When i got my 3rd negative C-Diff stool test, they did a colonoscopy and endoscopy on me and that was when I was diagnosed with severe Crohn's!
> November was sure 1 heck of a month!
> 
> Emily, 17, Ontario, Canada
> 
> 
> 
> Currently taking 150mg of Imuran, daily


I am allergic to flagyl.  Have you tried probiotic?  I have been told to double up when I am on antibiotics.


----------



## Spooky1

I have Metronidazole to start soon.  I'm planning on tomorrow and will start mega doses of probiotics too.  Must say, Ron, I get pretty ill on it too.  Will have to do my utmost to get through the course


----------



## ronroush7

Wishing you the best, Spooky.


----------



## Spooky1

Thank you, Ron.


----------



## ronroush7

Welcome


----------



## CarolinAlaska

Spooky1 said:


> I have Metronidazole to start soon.  I'm planning on tomorrow and will start mega doses of probiotics too.  Must say, Ron, I get pretty ill on it too.  Will have to do my utmost to get through the course


J has done it twice.  Not nice stuff, but doable.  Stay away from any form of alcohol or it will make you really ill.


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## ronroush7

Don't do the probiotics if it makes you sick.  Best to all.


----------



## Molly-Baby

Spooky1 said:


> I have Metronidazole to start soon.  I'm planning on tomorrow and will start mega doses of probiotics too.  Must say, Ron, I get pretty ill on it too.  Will have to do my utmost to get through the course


Hi, check with your dr. first, but try Gravol to deal with the nausea. Over the counter.


----------



## Molly-Baby

ronroush7 said:


> I am allergic to flagyl.  Have you tried probiotic?  I have been told to double up when I am on antibiotics.


Have you tried Vancomycin? Supposed to be better. I am allergic to Vancomycin though.


----------



## ronroush7

Is this an antibiotic?


----------



## Molly-Baby

ronroush7 said:


> Is this an antibiotic?


Hi, Ron, 
from http://www.drugs.com/vancomycin.html

What is vancomycin?

Vancomycin is an antibiotic. When taken by mouth it fights bacteria in the intestines.

Vancomycin is used to treat an infection of the intestines caused by Clostridium difficile, which can cause watery or bloody diarrhea. It is also used to treat staph infections that can cause inflammation of the colon and small intestines.

Oral vancomycin works only in the intestines. This medicine is not normally absorbed into the body and will not treat other types of infection. An injection form of this medication is available to treat serious infections in other parts of the body.

Vancomycin may also be used for purposes not listed in this medication guide.


----------



## ronroush7

Thanks.


----------



## CarolinAlaska

My doctor says that insurances will not cover vancomycin unless you have failed Flagyl three times.  It is very expensive.


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## ronroush7

Flagyl makes my hands or fingers nunb.


----------



## JaimeM

Hey everyone. So here's my story about Crohns and Cdiff.
I've been diagnosed with crohns since 2008. I work in the health care field and have had 2 bouts of cdiff over the years. In June 2015 I experienced my 3rd. Several years ago when I had cdiff I had a terrible time with flagyl so they put me on vancomyacin right away. After a few weeks I felt better and took my cimzia. Then once again got Cdiff. I was on another round of Vanco and was cleared then took my cimzia and got cdiff. (you can see how things are going here right?) Anyway after the third round of cdiff I had a CT scan that showed my Crohns site was obviously flared and had doubled in size since my CT 3 years prior. My Dr wanted to put my on difficid(a very expensive drug i believe it was 1700 out of pocket) Anyway I called my Dr saying I didn't know what to do bc I really couldn't afford something like that. So we did a fecal transplant. I did have to pay for my donors testing but otherwise has been a great success. It was done during a colonoscopy. 3 months have gone by and I still don't have Cdiff thankfully! I'm on my first round of antibiotics since then (I have a new fistula and a microperforation) So I'm praying and crossing everything on my body that I don't get Cdiff again. Having it June-Oct was a nightmare.


Edit ** I also had started taking VSL #3 during the last round of vanco


----------



## peluchde

Just recently in the hospital for another small bowel obstruction.  Was given IV antibiotics "in case of infection"????  Left hospital with diarrhea which continued the following week.  Finally tested for C-Diff.  Positive, again!  Liquid Vancomyocin 4x a day for two weeks.  Surgery scheduled for 4/25. Need to get the ileocecal valve and about 1 foot of small intestine removed.  11 obstructions have been way too many.    Hope C-Diff is gone by then.  Still using Stelara, Entocort, probiotics, Vitamin D.  Nothing works long term.  I'll probably try Remicade next.


----------



## CarolinAlaska

Sorry to hear it.  I hope this helps.  Nothing worse!


----------



## Lizette

Hi, my son has crohns since 2006 he is 16 he never had diarrhea or stomach pain, his only problem anal fissures, and pimples or abscess.. A year and half ago he started going to the bathroom more often and bleeding, bright red.  They dr put him prednisone a
For 2 months, the bleed stop and the bathroom stop, a year later exactly, nov 2015 he started bleeding and going to the bathroom more often, he lost weight, they put him again on prednisone for 2 months . Finished it 1st week on February.  After few week he started to bleed again, dr said is from the fissures that he has in the Anal area.. Then he started to go to the bathroom more often and watery. Lost 10 lbs in 12 days.  He has been in Flagyl and cipro for almost 8 years. 6 months one and 6 months teh kerosene, to keep the abscesses in the ano under control. Well he had a colonoscopy last week. All colon is swollen so he had colitis , dr suspected he had C- diff. ( he had this test done back in nov 2014 and nov 2015 both times came negative). The dr did a biopsy and came positive to C-diff. He started right away in vancomycin Hcl 125 4 times a day for 14 days. He dr does want him to be tested again in 30 days for c-diff.  Now. He stools are not smelly at all. He got the c diff due to the long term of antibiotics . The bleeding is from a deep tissue he has on the anal area.  How long does it take for the medicine to take effect. Will the diarrheal stop with the medicine? he was going to the bathroom recently every 2 hours.. Since he started the medicine he has not waken up at night to use the bathroom, during the day he does go but not as frequently as he used to, but still watery, maybe once a day he will have a solid stool. Is this because of the Medicine?  And also He has no pain even though all the colon has inflammation. How long for the colon to become normal? 
ThanK you Lizette 
Michael dx at age 6 now 16 almost 17
Pentasa, vitamin d, iron, probiotics and now vancomycin.


----------



## Ann Morgan

CarolinAlaska said:


> My doctor says that insurances will not cover vancomycin unless you have failed Flagyl three times.  It is very expensive.


I was prescribed Vancomycin about a year ago for C-diff. My Insurance Company had to do a "pre-authorization" for this expensive medicine. My Insurance Company paid about 66% of the cost and I paid the rest. Unfortunately my part cost me $405.00 for a two week supply. Outrageous !


----------



## Ann Morgan

I had C-diff a year ago.  Does this mean that I have a greater chance of getting C-diff again ?  Do people get C-diff over and over again ?  Just wondering.


----------



## leloupaccroupi

@Ann Morgan

It's certainly possible to contract C Diff repeatedly, especially if you have IBD i believe your chances of contracting it are higher than the average person's.

I was in the hospital this past week for pancreatitis caused by Imuran failure, I then contracted (I imagine) C-Diff during my stay. This came as a surprise to me as I didn't really have any symptoms of pain outside the normal untreated flare pain  (I was recently diagnosed, haven't started full treatment yet). They prescribed me a 12 day cycle of flagyl at 6 x 50mg pills a day. Bowel movements have been pretty well inconsistent, soft hardly formed, a couple nearly formed but not very often and only 2 bouts of actual watery D in a total span of 4 days. 

I know everyone heals differently but did anyone else experience anything similar, have a general timeline in which they healed? Any symptoms I should be aware of that warrant a return to the ER? 

Thank you very much for hearing me out and I hope everyone is well!!!

Keenan


----------



## Ann Morgan

leloupaccroupi said:


> @Ann Morgan
> 
> It's certainly possible to contract C Diff repeatedly, especially if you have IBD i believe your chances of contracting it are higher than the average person's.
> 
> I was in the hospital this past week for pancreatitis caused by Imuran failure, I then contracted (I imagine) C-Diff during my stay. This came as a surprise to me as I didn't really have any symptoms of pain outside the normal untreated flare pain  (I was recently diagnosed, haven't started full treatment yet). They prescribed me a 12 day cycle of flagyl at 6 x 50mg pills a day. Bowel movements have been pretty well inconsistent, soft hardly formed, a couple nearly formed but not very often and only 2 bouts of actual watery D in a total span of 4 days.
> 
> I know everyone heals differently but did anyone else experience anything similar, have a general timeline in which they healed? Any symptoms I should be aware of that warrant a return to the ER?
> 
> Thank you very much for hearing me out and I hope everyone is well!!!
> 
> Keenan


I was diagnosed with C-diff in April 2015 after my stool sample came back positive for C-diff. I was given a prescription for a two week supply of Vancomycin pills. I followed up with my doctor after the two weeks and he said I was OK. My doctor did not require a stool sample from me after my treatment. The prescription was very expensive, even with me having health insurance. 

My UC symptoms have always been diarrhea. But in 2014 I had terrible constipation. I got prescribed an antibiotic by one of my doctors and this brought my diarrhea back, and then some. Then I was diagnosed with the C-diff and was prescribed the Vancomycin. 

(  I was given Flagyl by my PCP after my diagnosis until I could get an appointment set up to see my new Gastroenterologist. Flagyl did not work for me, it just gave me worse diarrhea. )

Thank you for listening.


----------



## Ann Morgan

Keenan : I recommend the www.mayoclinic.org website for reliable information. 

There is also some information about C-diff on www.c-difficile-treatment.com, but I am not as familiar with this website. ( Note : they are trying to sell a book and their recommendations for natural health remedies ).


----------



## leloupaccroupi

Thank you very much for sharing both your story, and information! I'm sorry to hear it's been such a pain along with an already..

Hope all is well!!


----------



## ronroush7

I was just recently tested for c diff and it came back negative.  I was asked to take it again because my stomach has been torn up.  I attributed it to being off of Humira temporarily.


----------



## CarolinAlaska

ronroush7 said:


> I was just recently tested for c diff and it came back negative.  I was asked to take it again because my stomach has been torn up.  I attributed it to being off of Humira temporarily.


I'm glad it was negative.  I hope your tummy is back on track quickly.


----------



## ronroush7

CarolinAlaska said:


> I'm glad it was negative.  I hope your tummy is back on track quickly.


Thanks


----------



## Lynda Lynda

The last post here was 2016 ?  Is there another group for c-diff ?


----------



## ronroush7

Lynda Lynda said:


> The last post here was 2016 ?  Is there another group for c-diff ?


Not that I am aware of.


----------



## susangrant

My 17 year old son was diagnosed with probable UC/ but can't rule out Crohn's yet- so they are calling it unspecified. Its been a tough year with many meds, 
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response. 
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods. 

How long do people give remicade a chance? How soon should we see a response?

He is on his second round of antibiotics now for C-diff....
any advice?


----------



## love13

I am new to this forum...just reading some of your post I have learned so much about this awful disease. Praying for everyone.


----------



## thike1966

*C-Diff and My Roller Coaster Ride*

Hello,
I just got out of the hospital two weeks ago and I'm still on the antibiotic budesonide because it was my fourth round with C-Diff since last October. Seven more days in the hospital and I'm working with an Infectious Disease doctor. The last 16 months, every time I started feeling better, I got knocked back down and get weaker and weaker.

Last Friday I was getting ready to get on my bicycle that's on a trainer in the basement, twenty steps away from the bathroom. I tried walking but every time I get active I have to go to the bathroom. 

I lost 80 pounds since I was diagnosed and most of it is muscle. My nutritionist put me on an all liquid diet to give my intestines a break as the Entivio is now starting to work. It's from a company called Kate Farms and is the same formula used in feeding tubes. The proteins are broken down into peptides. At 500 calories a day, she wanted me to start on four a day and then move to 5 a day to help get my weight to move in the right direction. I haven't been 154 lbs. since I was a sophomore in high school in 1983. 

Unfortunately something in them sent me into diarrhea progressively worse. I was told that it might take a few days for my body to adjust so I stayed with it until it got too much and I couldn't keep up my hydration. After I started eating solid food, my poop got solid. 

After I finish tapering down budesonide I am most likely to get a Fecal Transplant. Which is good because as a child due to being born 8 weeks early with a hole in my heart where the four chambers had not closed. So in the sixties until the early eighties I was pumped up with antibiotics every time I had a cold, flu or my many bouts with pneumonia. Doctors thought antibiotics could do no harm. Even today we are just starting to understand the millions of cells in the biome. So my biome lost it's ability to defend me, where 80% of the immune system resides. A fresh biome will be a blessing. 
I'm on Wellbutrin and Cymbalta which helped me from jumping into the abyss lake of depression. I can't help but wonder, not when I will reach remission, but what the hell is going to happen next. 

Remicade starting working than failed. Humira started to work and whether or not it was C-Diff or the Humira failing, I went to the hospital for my first battle with C-Diff. I kept up the Humira until my third round with C-Diff.

To further complicate my life, one week ago my ankles, knees and elbows joints got inflamed.  My doctor tested me for Rheumatoid Arthritis (RA), another autoimmune disease.

I'm trying to be cautiously optimistic as I feel my guts settling down and my joints have calmed down, other than a torn muscle in my left foot from walking down the stairs with inflamed ankles. It's interesting it happens on the left foot.  My left knee has been dislocating. My knees are misaligned. The year before I developed Crohn's I had surgery on my right knee after an unfortunate collision during a competitive volleyball game. I asked my orthopedic surgeon about the misalignment. He told me my knees were strong enough to not worry. All of my bike riding and volleyball paid off. 

Now that my body has shrunk me into a ghost of what I used to be, my strong knees are gone. Luckily everything is loose enough that nothing is being damaged. The MRI was clear. I have a fancy knee brace that I need to wear more often, but at night when most of the dislocations happen because I am an active sleeper, the brace tangles and my blankets go away. The best way to remedy this is to ride my bike, which was about to happen when my joints inflamed. I find out next week if my blood test shows RA.

When I turned 50, my doctor prescribed medicine for my high blood pressure and high glucose. I did the unconventional route and started exercising and making better food choices. I didn't need any medicine and was feeling great. I hit a plateau at 235 lbs. I prayed to lose 20 more pounds and the next week when Criohn's assaulted me and my high fiber diet. After ten days, I was hospitalized 25 pounds lighter, water weight from massive dehydration and lack of absorbing food for many days had me 4 days away from organ failure and as the doctor explained, 4 days form never going home again.

It’s been a real roller coaster ride, but hopefully by the end of next summer, I’ll be riding my bike in the Colorado Rockies that I look at every day from my Centennial home, a suburb of Denver.


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## Spooky1

Thike, I sincerely hope things improve for you soon.  What a terrible time you've had.


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## thike1966

Thank you Spooky,
Having a good day today. I cautiously hope this turn around is going to lead to remission.  

Next week I will receive an aloe tincture from Univera, it's concentrated to only the healing compounds. A good friend of mine and her and her grandmother that she lives with both are feeling ten years younger using Univera products. So onward I go.

Cheers,
Michael


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## Spooky1

Is this product available without prescription?  I could do with feeling 10 years younger, Thike.  I try all sorts of things to help me, but not many do.  I hope you manage a good phase of remission.  It's the fatigue with me, along with RA.  Somehow i think they will find a cure once i'm gone to Heaven, lol.


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