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02-12-2015, 10:37 PM   #1
SJ!
 
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Help! anyone with knowledge of C Diff

Hi

Greg's been steroid dependent for 2 years.

Dr tried to ween him off the pred and he has flared big time.

Dr was fantastic and organised to start urgent remicade. Any way I suggested he have a stool test just in case he has an infection as he is so sick.

He started remicade on Wednesday and today the Dr phoned for us to pick up a Vancomycin script for c diff.

So my question is is C diff likely to be the cause of his illness or a result of a sick and susceptible bowel?

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Wife to Greg who has Indeternminate Colitis

Diagnosed November 2012 Indeternminate Colitis

Current Meds.
3.5grams Sulfasalazine
Remicade
Prednisone
Vancomycin
Vitamin D
Iron[/COLOR]
Previous:2012 PANCOLITIS, C-Diff, 100mg IV pred, Vancomyacin, Flagyl, blood transfusions.

Last edited by SJ!; 02-13-2015 at 12:59 AM.
02-13-2015, 12:36 AM   #2
FrozenGirl
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I'm not entirely clear what your asking but by my interpretation, both. The C Diff makes you feel horrible and symptoms tend to be the same as CD but worse and more severe at times. Why he got it, may be a result of IBD. For reasons I'm not entirely sure of people with IBD are more likely to get it even if they don't have usual risk factors ( antibiotic use, immune defiency etc).

I got C Diff and IBD was the only reason I could see. Been on antibiotics once in my life. I hope he gets better from the C Diff quickly.
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02-13-2015, 12:55 AM   #3
SJ!
 
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Thanks Frozen Girl for the response!

I didn't phrase my question well. I think I was clutching at straws for an easy solution out of feeling helpless for him!

Basically there is apparently a possible cure for recurrent c diff that involves feacal transplant. And I had this bright idea that maybe all his IBD was just because of background C diff that mimicked Indeterminate colitis apparently this is possible.

But I have now remembered that his last colonoscopy and stool in August showed no c diff infection.

It was a question formed from tiredness and stress and a poor one at that in a ridiculous bid for a quick cure!

Thanks for listening!

Sarah
02-13-2015, 12:57 AM   #4
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I usually don't think this way and make random posts but he's really sick and Sometimes when you feel like you understand everything, all of a sudden I can't think clearly and forget the facts!
02-13-2015, 01:14 AM   #5
FrozenGirl
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No problem, I totally get it. I can be an incoherent mess when I'm stressed out. They have found fecal transplants have been successful for lots of recurrent C Diff cases so if he has had C Diff all along just containing it may be a possibility for him. Negative stool however does seem to rule that out, though I guess it could be just frequently coming back, hard to say.

I believe we go have a spouses/caregivers support group if you are interested.

Don't ever feel bad for wanting a quick fix. Until I was officially diagnosed, even when my primary care docs said it was probably IBD I clung to the idea maybe it was a bug or a crazy virus. We all wish we could feel better like boom.
02-13-2015, 01:15 AM   #6
FrozenGirl
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And I see you are in both groups now, ignore that sentence.
02-13-2015, 02:00 AM   #7
SJ!
 
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Thanks Fozen girl!

I'm glad you get my train of thought! Yes the negative tests were at the same time as a scope with active disease.

But I think it is still a question worth asking on Monday morning at the docs!

Thanks for that!
02-28-2015, 10:40 AM   #8
SupportiveMom
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SJ Did you get your questions answered regarding c diff? How did the visit with the doc go?

My kid has had c diff 3 times now since diagnosis in 2012. One of the times she caught it while being in the hospital. It is rampant in the hospital environment, and those with CD or UC or on any immune suppressing drug is highly susceptible. Fecal transplants, in my experience, are only suggested if someone has had c diff and doesn't respond to antibiotic treatments. I hope you were able to get answers for your husband and he is now free and clear of c diff. Gosh I hate the smell of c diff!
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02-28-2015, 02:56 PM   #9
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Hi Supportivemom,

Thanks fpr your reply, no I was hoping for more advice, it's a tough time here, Greg was hospitalised from Monday to Wednesday just gone and the Micrbiologist diagnosed Greg with refractory C Diff. He doubled the Vancomyacin dose last Monday and he seemed to pick up but unfortunately he has started going downhill again. Explosive diarrhea and what feels like a very bad stitch, he is using a heat pack on his stomach.

We realy are living day to day atm
02-28-2015, 03:12 PM   #10
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The microbiologist said they are certain though that his disease is indeterminate colitis and not just a susceptability to C Diff.

He didn't say much about the transplant, except that in Greg's case it's not possible.
04-03-2015, 04:21 PM   #11
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I had C-diff when I was diagnosed with ulcerative colitis / crohns. It wasn't until I got really sick that's what was causing the flare up. They treated me with flagyl / metranodizole as well as probiotics. I got better fast but it took months to fully recover and anytime I went off probiotics I would have issues. I take 1 - 2 tablets a day of culturelle. Also drinking kefir helps. Another time I had salmonella for over 4 months and nearly died because Dr.'s kept saying it was crohns / ulcerative colitis. I found GI doctors and regular doctors to be incompetent often.
04-04-2015, 10:39 PM   #12
Ann Morgan
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I just found out I have c-diff three days ago.
My Primary Care Physician started me on Flagyl today because I am not able to see my new Gastroenterologist until this Thursday.
I will have a lot of questions for my new doctor, but generally doctors have very little time to answer questions at all.
If I use Flagyl three times a day for ten days, will my c-diff go away ?
Or will I have this c-diff for a long time ?
I was getting out of my apartment four days a week, attending a program/facility that is helping me learn/reinforce my Coping Skills and to help me socialize in order to end my isolation. I have Major Depressive Disorder and Anxiety.
Well, now I am infectious and I am sure that I will not be able to attend any more classes until I get a "clean bill of health".
Now I am just staying home and eating and watching TV and isolating......this all is just no good for my mental health. I can revert back to my old habits quite quickly.
I have read about c-diff on the Internet, but it confuses me more than comforts me.
Thanks for listening.
04-05-2015, 12:31 AM   #13
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Also I would like to reiterate how great kefir and culturelle are. Lifeway Kefir is almost 100% lactose free, it's gluten free as well. It has loads of probiotics in it and is great to drink if you have any GI bacteria infection or have crohns / colitis. It really helps balance natural bacteria in your GI tract. Definitely give it a try, strawberry and raspberry are the best flavors.... the others aren't good in my opinion. It has more active cultures in it than most yogurts and since you drink it, it's easy to routinely include in your diet.
04-05-2015, 02:06 AM   #14
Ann Morgan
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Jeff: Thanks for the information. Not one of my doctors has ever mentioned probiotics to me ! I did go to a Nutritionist last year for a one time visit/consultation. After a one hour conversation she wrote up some recommendations for me based on our conversation and one of her suggestions was probiotics. I did not want to take anything like a probiotics before I talked to a doctor. I make a smoothie every day that has banana, apple, carrot juice, greek yogurt, soy milk, honey and vanilla. I will look for the products you mentioned. : - )
04-06-2015, 07:52 PM   #15
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Most GIs recommend probiotics to all Crohn's/UC patients. I say go for it!
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04-06-2015, 09:13 PM   #16
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Hi Ann,

i wouldn't worry too much about transferring C-Diff to others unless you were visiting the hospital or Dr's office! Most people wouldn't get sick from it.

By all means stay home if you feel sick though!

Greg had bad symptoms while he was having his Infliximab infusion, His infusion is at the oncology and Infusion centre and we were so worried we would give it to someone with cancer!

The nurses gave him his own bathroom to use with a big "do not use" sign and cleaned it with bleach after we left!

As for how long you will have C-Diff, it is hard to know!

As it is your first infection you might not get it again, hopefully.

I'd like to know how you get on at the GI!
04-08-2015, 10:32 AM   #17
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Hey SJ,

About three months ago they found an unhealthy balance of C Diff in my gut, I have been diagnosed with UC since July 2014. They first course of action was a 2 week course of Flagyl and after those two weeks were up I felt as if nothing had changed and was sure the infection was still there. Turns out the C diff infection was still there so the next course of action was Vancomycin (and if that didn't work out, I too was informed about the lovely techniques regarding the stool transplant :/ ). Luckily for me, the Vancomycin worked and the infection disappeared, however I was surprised by this as I felt sure nothing had changed. I felt no difference in my symptoms and was still on a bad flare, so it was disappointing as we had hoped that it was contributing to my condition.

I can't say for sure, but very recently my symptoms have been starting to get better, before my doctor put me back on Pred and started me on Imuran I felt like my flare had been improving to a small degree (after being flared for a whole month with no medication except for Mesalazine) and maybe this is due to the removal of the C Diff and all that needed was time?

Hopefully you find some answers to your thoughts, the C Diff may be playing a larger part in your Husbands condition, for me it did not appear to be so.

Best of luck
04-08-2015, 12:27 PM   #18
Ann Morgan
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Hey SJ,

About three months ago they found an unhealthy balance of C Diff in my gut, I have been diagnosed with UC since July 2014. They first course of action was a 2 week course of Flagyl and after those two weeks were up I felt as if nothing had changed and was sure the infection was still there. Turns out the C diff infection was still there so the next course of action was Vancomycin (and if that didn't work out, I too was informed about the lovely techniques regarding the stool transplant :/ ). Luckily for me, the Vancomycin worked and the infection disappeared, however I was surprised by this as I felt sure nothing had changed. I felt no difference in my symptoms and was still on a bad flare, so it was disappointing as we had hoped that it was contributing to my condition.

I can't say for sure, but very recently my symptoms have been starting to get better, before my doctor put me back on Pred and started me on Imuran I felt like my flare had been improving to a small degree (after being flared for a whole month with no medication except for Mesalazine) and maybe this is due to the removal of the C Diff and all that needed was time?

Hopefully you find some answers to your thoughts, the C Diff may be playing a larger part in your Husbands condition, for me it did not appear to be so.

Best of luck
Thank you for sharing your story.
04-08-2015, 12:36 PM   #19
Ann Morgan
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I see my new GI tomorrow late afternoon. I am going to ask about probiotics and the plain Greek yogurt and Kefir and stuff like that. I would not mind going back to the Nutritionist I saw one time last year. I would only be able to afford one visit because this doctor is not on my insurance plan. She charges $120.00 per hour ! I have not even followed a fraction of the recommendations she gave to me last year, so going back to see her would probably be stupid. Does anyone here drink a lot of water every day ? I was given a formula to figure out how much water I should drink every day based on my weight. 188 pounds divided in half = 94. I am supposed to drink 94 ounces of water a day ! Have a great Wednesday.
04-08-2015, 09:06 PM   #20
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Hi All,

It is amazing how much better Greg is feeling! After almost three years of constant flares and only one day in HIS WHOLE LIFE where he thinks he had one normal bowel movement, Greg thinks he may be in remission!

Infliximab is working and the double dose and extra long tapered course of Vancomyacin has seemed to work.

His scans show how sick he was with many finger like psuedopolyps in his transverse colon. The pathology shows that he has no dysplasia of which he is in the high risk group for so now we are just so grateful.

I am hoping the C-Diff doesn't ever come back so I will be cleaning with bleach for quite some time into the future.

Greg is getting out of bed early in the morning and taking the train into the city for work, this just would have been an impossibility before.

IBDlivingfree, I do believe Greg had the C-diff so bad due to chronic UC. The microbiologist explained to us that keeping the integrity of the bowel lining healthy will protect against C-Diff. This is why the GI tried the "rescue Infliximab". Your story seems a little similar, thanks for sharing it!

We are too close to just being out of the woods as Greg's C-diff infection was heading towards being a life threatening situation very quickly! For now it feels so good to have Greg looking and feeling well but I think we are both still in shock at how nasty a combination UC and C-Diff can be!

In between the C-Diff infections he tested as being totally clear of C-Diff but he still suffered from chronic moderate UC and he was steroid dependant over the last 3 years, he couldn’t drop below 35mg and still function and go to work.

I'm wondering about the transplant options and exactly when Dr's decide to use it, for example, is it done in an emergency setting?

This time it was not considered for Greg at all by the DR's. But I'm wondering if the transplant is more often done on patients with chronic C-Diff as opposed to Acute Fulminant C-Diff which has a real mortality rate if an urgent colectomy is needed?

Greg's infection was bad enough for him to be very sick in hospital with the need for blood transfusions etc but not at the point of no return for his bowel if that makes any sense.

At the end of the day everything all just seems to have fallen into place and my husband seems to have more lives than a cat! I must get Greg on the Kefir!
04-08-2015, 09:13 PM   #21
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Oh and not only does he seem to be in remission with the Infliximab, he has fully tapered off Prednisone! The steroids were indeed a long haul!

In fact the whole reason Greg started to get very sick was because the GI tried to taper him off Prednisone to start the Inliximab, it was like staring down a gun barrel!

Is this the usual approach or should the GI have started the Infliximab first and then tapered the steroids? All these retrospective questions!
04-09-2015, 06:15 PM   #22
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Oh my gosh! I feel like the hypochondriac medical wife and mother where there's always a sick person in my house!

Can't we get a break in our house! Greg said last night after work that he isn't really "going that great" and was so tired this morning and couldn't get out of bed at 5.30am. He slept in until 6am and then he was in the bathroom so long this morning he missed the early train!

One week was all he had!

To top it off... my 13yo son who over the years has been monitored closely for IBD who is already diagnosed IBS at 5 with anal ulcers (very suspect indeed and not really an IBS symptom but we didn't want to make mountains out of molehills)

Anyway my son was clenching his red watery eyes in pain with a nasty bout of uveitis (happens every couple of weeks)! Both Greg and my son suffer from acute uveitis! I took him to the Dr for a check up as he is off on a scout hike for three days on the National Park!

The GP just looked at my son and said "You do know IBS is a blanket term for we don't have a formal diagnosis yet. And eye problems are often because of IBD, your son needs to go to the Paediatric Opthamologist and back to the GI, Here's a stool test"

I don't mean to whine but it gets to be too much, both financially and emotionally.

Aside from IBD my daughter had a fall a few years ago and fractured her vertebra and her sternum and also lives with daily pain.

There, how annoying am I with all this stuff. And apologies in advance for my depressing tone. I know I shouldn't expect Greg to be totally well so soon after what he's been through, and there are many people with much sicker kids than mine.

But I do hope to be person on this forum who can give more that I take.

Thanks for all you guys x
04-09-2015, 09:43 PM   #23
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Yikes! Anal ulcers and uveitis, yet told IBS???
04-09-2015, 11:00 PM   #24
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Oh I know 2th Fairy!

It's mostly my fault and a matter of timing that we haven't pursued a diagnosis fervently.

He was quite healthy by the time came for both GI appointments (he's been to only 2 specialist appointments).

The first was when he was 5 and I don't even know if the fecal calprotectin test was available then and I agreed that a colonoscopy would be a bit invasive for a single bout of ulcers and transient diarrhoea and a lack of appetite in a young child. Thinking about it retrospectively though, he always had mucus in his nappy and always runny poo as a baby, but again I thought it was all normal. How Obvious!

And, Greg although sick all his life was only diagnosed 3 years ago as he was so sick he was literally bleeding to death! Typical man who never went to the DR, thank goodness he has changed his behaviour! The irony is when I first took our son to the Dr I said to Greg that I think he had IBD way back in 2006! Greg thought I was the loony wife diagnosing him with a nasty disease...

And at the second appointment in 2013 at a GI. Greg's GP was so convinced our son has UC or Crohn's as his referral requested a colonoscopy! I was definitely disappointed with her! By this time I knew all about IBD after Greg's untreated UC had progressed to the pancolitis I mentioned. Any way she was really rude and pretty much said to my son that he was making it all up, and just because Greg had IBD doesn't mean my son has anything at all, I think she was jaded to have a request for a colonoscopy from just a GP!. What a waste of $300!

And just life happening etc, I hadn't been game enough to waste more money and he really only has had mild symptoms on and off, I can pinpoint a few times when he has looked really unwell over a few weeks, but to be honest we had just accepted that that was who is was. a kid that often couldn't eat
!

Ironically there was long a letter sent to the office of my GP from this second GI that I had no knowledge of at all. It said to the effect "yes Elliot has quite severe IBS symptoms and he needs a follow up test on occult white and red blood stool samples and then to review after that" Totally different approach to what she said to us face to face! She didn't even give us the testing forms. The GP was gobsmacked the other day as she thought the GI was dealing with us! The truth is the GI told the GP she was following up but told us not to return! Really strange!

Anyway he is back from his hike looking 110% healthy so I'm going to wait on the test until he feel a bit unwell, which will only be couple of days anyway!
04-11-2015, 01:33 AM   #25
Ann Morgan
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Hey SJ,

About three months ago they found an unhealthy balance of C Diff in my gut, I have been diagnosed with UC since July 2014. They first course of action was a 2 week course of Flagyl and after those two weeks were up I felt as if nothing had changed and was sure the infection was still there. Turns out the C diff infection was still there so the next course of action was Vancomycin (and if that didn't work out, I too was informed about the lovely techniques regarding the stool transplant :/ ). Luckily for me, the Vancomycin worked and the infection disappeared, however I was surprised by this as I felt sure nothing had changed. I felt no difference in my symptoms and was still on a bad flare, so it was disappointing as we had hoped that it was contributing to my condition.

I can't say for sure, but very recently my symptoms have been starting to get better, before my doctor put me back on Pred and started me on Imuran I felt like my flare had been improving to a small degree (after being flared for a whole month with no medication except for Mesalazine) and maybe this is due to the removal of the C Diff and all that needed was time?

Hopefully you find some answers to your thoughts, the C Diff may be playing a larger part in your Husbands condition, for me it did not appear to be so.

Best of luck
Thank you for saying that the Vancomycin worked for you ! My PCP gave me Flagyl until I could get in to see my new GI this week. I was on the Flagyl six days and it gave me diarrhea all day long. I saw the new GI on Thursday and he wants me to take Vancomycin. My insurance company just got the paperwork from my doctor and now I am waiting to see if my insurance company will approve the medication for me. Even if they do approve it, it will be expensive. I hope the Vancomycin works for me. ( My colonoscopy was normal last August, but I took antibiotics in November ). I have Ulcerative Colitis. I currently take Lialda and Questran. I mentioned Probiotics to my new GI. He gave me the names of the ones he would recommend. I bought some today and will start taking them tomorrow.
04-11-2015, 04:24 AM   #26
SJ!
 
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Hi Ann Morgan,

Sorry to hear you have C-Diff

I thought I saw you mention on a different thread about Injections for Vancomyacin?

To treat C-Diff you must take the oral Vancomyacin. IV vanc will not get from the blood stream to the gut to kill the C-Diff or vice versa. So you need the more expensive pills. Also you need to have a really thorough cleaning regiment over the next few months.

Probiotics are good, but just check for any contraindications with your regular medicines.

For example Greg can't take saccharomyces boulardii with Infliximab.

I hope your insurance company pays for the medicine. And asking about Fecal transplant is probably a good idea, I'd like to know what your Dr thinks of FMT
04-11-2015, 12:13 PM   #27
Ann Morgan
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What do you mean by "cleaning regimen" ?
04-11-2015, 09:12 PM   #28
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C-Diff is highly contagious, it is an infectious disease.


http://www.azdhs.gov/phs/oids/hai/do...et-general.pdf

A cleaning regimen is having a really thorough hygiene standard so you can make sure you don't get re-infected.

Basically C-Diff has these spores that can live dormant on surfaces in the home for many months only to be re-ingested and then reinfect you. Apparently Bleach kills the spores.

I also recently started a whole tread on how to clean up after C-Diff as I never knew this before.

That is why when Greg has been hospitalized with C-Diff he has to be in isolation and visitors need to wear gloves and a gown etc, not for Greg's protection but to stop the spread of an infectious disease to other patients in the hospital.
04-11-2015, 10:32 PM   #29
Ann Morgan
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SJ: Thanks for the information, I will read up on this.

I found out on April 1st that I had the c-diff. The only toilet I have used since then is my own. I have been only going outside of my apartment for just the bare neccessities. I did not know I could reinfect myself. Why don't doctors tell me any of this, I don't get it.

I WAS participating in a program for 3-4 days a week for the past 5 weeks before I got the c-diff diagnosis. I was going there each week to socialize to combat my isolation and also to learn/reinforce my mental health coping skills. After the diagnosis I could not go back to the program, which has left me very depressed. I have a past history of isolation and I was doing very well at socializing during those 5 weeks. Now I sit here at home and get depressed.

I should be starting my Vancomycin very soon. I can't take my Questran AND the Vancomycin, which is unfortunate. I suffer from anxiety too, so this whole c-diff thing worries me greatly. I know it is a thing to take very seriously. I think my sister thinks I will just take the antibiotic and it will all go away in 2 weeks. I am trying to relax, but I can't. Not taking my Questran is going to cause me some very terrible yellow watery diarrhea every single day while I am taking the antibiotic. And the Vancomycin will cost me a lot if money, I have to pay 33 % of the cost of the drug because it is a Tier 5 drug with my health insurance company.

I am very tired.
04-12-2015, 12:13 AM   #30
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So sorry to hear all this Ann

Bleach is inexpensive which is one positive. Why can't you go back to your group? Are the immunosuppressed people, or are you just too sick?

I hope you get the medicine you need soon
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