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03-22-2012, 06:32 PM   #1
Mom2oneboy
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C Diff?

And so the emotional roller coaster continues....

S continues to have blood in his stool-day 4. This is unusual for him. We've NEVER had blood in the stool before. Called the doc and they want a stool sample to check him for c diff. He has been on antibiotics for 2 or 3 months now. What are we up against if he now has c diff?

He's also starting him on VSL #3.

The good news is he continues to feel well. Going to school...playing basketball, etc.

My nerves are just shot! I could just cry!
Shelley
03-22-2012, 08:13 PM   #2
imaboveitall
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V's doc used to routinely check for c-diff, it's not a big deal.
He likely doesn't have it as it causes a distinctly foul odor and explosive diarrhea. It's kind of hard to miss.
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03-22-2012, 08:47 PM   #3
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Ahhh Shelley, It is such a roller coaster ride! Sounds like you could be hitting another twist! Take a deep breath....yes I cried when Daniel got C-Diff. I work in the health care field so I know what this stuff is! But it can be treated, all though it will take time & a lot of patience. We don't know he has it so TRY & stay calm. I know easier said than done! First line of defense until you find out either way.....WASH WASH WASH your hands! Everyone in your house hold has to be diligent about this! After Tidy Bowl Room visits & before you put anything in your mouths! If you have an extra bathroom maybe designate it for his use. We have 2 full baths & a powder room. The powder room became Daniels. No one else used it. Just extra precautions. Also since Daniel had/has the same side effect issue with Flagyl that your son does. The only way to treat C-Diff is with Vancomycin. Daniel was on this antibiotic for 4 months. Yes it might seem like over kill but it is the ONLY antibiotic & the way it helped Daniel. Your Dr. has started you on the right path with the pro-biotic! It is written in the Medical Journals that this is the way to treat C-Diff. Not only did we see his GI Dr. but we had to go to a Infectious Disease Dr. as Daniel had it twice. I don't tell you this to scare you .... I tell you this to get it treated properly the FIRST time. IF he has it. With C-Diff it becomes a spore about 7 hours after it is formed. As a spore it makes it impossible for anything to kill it but bleach or cavicide. The bacteria form spores inside your gut only when the spore opens can the Vancomycin kill the bacteria. It takes about 3 weeks (as I remember) for the spore to open. You need to have the med in the gut to catch them when they open. Thus Daniel took the Vancomycin on a descending dose for 4 1/2 months. 1 pill 4x's a day for 2 weeks, 1 pill 3x's a day for 2 weeks, 1 pill 2x's a day for 2 weeks & so on until we were down to 1 pill every other day for a week then every third day for a week.

I know this is long winded but I don't want anyone to go through what Daniel did. There are many levels of sickness if you will to C-Diff. Mild to Very Severe! It's nothing to fool around with & can also make you go into a flare or your Crohns worse! Nip it in the bud real quick is my Motto!

Please let us know how things go. If you have ANY ?'s please ask. Here or Privately! I will try & answer as soon as I can! Julee

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Meds taken...Prednisone 60 mg start, ended 12/25
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03-22-2012, 09:07 PM   #4
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imaboveitall.....Yes I do agree with you that it has a di-STINK-tive smell & is usually explosive D to boot. But in my son's case & with my first hand knowledge as I have worked with many patients with it. I was FLOORED when my Son's test came back positive with it!!!! It didn't have the usual STINK & D was loose formed if you will & since he hadn't gotten his flare under control totally. There wasn't a big change in what I was seeing other than a few flakes of blood. More mucus & more frequency by 2-4 times a day. Maybe he was the exception to the rule. When he got it the second time a month later (it was only treated with a 2 week course of Vanco.) He was really sick we didn't mistake it the second go round at all! I don't want anyone to go through what he did that second time! I hope he doesn't have it. But being on Flagyl for more than a month (could be even less) without having a pro-biotic on board can cause you to get C-Diff. He will have to take a pro-biotic the rest of his life because of the C-Diff.
This was my son's experience. Not a normal one but one that can happen when antibiotics are taken for long periods of time.
03-22-2012, 11:10 PM   #5
Mom2oneboy
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Julz,

Thank you so much for the great info. I'm at a point where I can't even google it to find out about it. So your info is most helpful.

His poop isn't overly foul smelling and it's not explosive (typing that makes me giggle). I'm having a flashback to when my MIL had some sort of explosion in my bathroom and literally sprayed my wall like a skunk. Anywho, back to the topic S's poop is no different other than it has blood in it.

Tomorrow I will collect a sample and take it to the lab. I wonder how long it will take to get results back on that? The waiting game kills me! When God handed out patience he skipped me.

Shelley
03-23-2012, 06:23 AM   #6
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Shelley, Even us seasoned CD parents get wound up when things start snowballing! I hope you don't mind but I giggled with you! Sense of Humor helps to get you through the Messes in Life! Although some DAYS...Ok on to the answer to your ? !

It depends on the Hospital. My son goes to Hershey, but we usually do most of the tests at our home town hospital. It's much much smaller but they still have results to us within a day. Sometimes within hours. How ever our Dr's say once you have had a positive result yours will always have one. I think some way they know when it's in ACTIVE faze & the counts are much higher. I will have to look into this more as I am not totally sure. But he did have the C-Diff test several times after & somehow they were able to know if he was sick or not with it again.

Keep in touch! I hope results get back to you quickly! Julz

P.S. I did some digging & found this on "Lab Test Online"
Maybe this is overkill again but I found some of this info. very useful. Sometime we forget some important notes when it comes to testing. I underlined each ? they had. So you can read what you want to & skip the others.


How is it used?
---------------
Clostridium difficile toxin tests are used to diagnose antibiotic-associated diarrhea and other conditions and complications caused by toxin-producing C. difficile. Conditions resulting from this infection include pseudomembranous colitis, in which dead tissue, fibrous protein, and numerous white blood cells form a lining over the surface of the inflamed bowel, toxic megacolon, and perforated bowel. Testing may also be ordered to detect recurrent disease.

There are a number of tests that are available to detect the infection and to determine if the strain that is present produces toxin. Some tests are very sensitive but take some days to complete, while other tests are rapid (several hours) but are not considered to be very sensitive or specific. Therefore, a combination of tests may be used to help make a diagnosis. Some of the commonly used tests include:

C. difficile toxin B, or toxins A and B, by enzyme immunoassay (EIA) tests are some of the most common tests used by laboratories. Results are typically available within 1 to 4 hours. Though these tests are rapid and widely available, they are not sensitive enough to detect many infections; they miss up to 30% of cases. Therefore, they are not recommended for use by some professional organizations.
A glutamate dehydrogenase (GDH) test detects an antigen that is produced in high amounts by C. difficile, both toxin and non-toxin producing strains. It may be used as a first step to rule out an infection with C. difficile, but it should not be used alone. Since it is not very specific for toxin-producing C. difficile, it is often used in combination with a test for toxin by EIA or a cytotoxicity culture.
Tissue culture to detect the C. difficile toxin is a test that looks for the effects of the cytotoxin on human cells grown in culture. It is a more sensitive method to detect toxin, but it requires 24 to 48 hours to get the test result.
A relatively new molecular PCR (polymerase chain reaction) test can rapidly detect the C. difficile toxin B gene (tcdB) in a stool sample. This test is sensitive but is not widely available.
Toxigenic stool culture, which requires growing the bacteria in a culture and detecting the presence of the toxins, is the most sensitive test for C. difficile, and it is still considered to be the gold standard. However, it can take 2 to 3 days for results. A culture will also not distinguish between C. difficile colonization and overgrowth/infection.

Currently, there is no one test that is rapid, widely available, and sufficiently sensitive and specific. Until the development of such a test, the Society for Healthcare Epidemiology of America (SHEA) and the Infectious Diseases Society of America (IDSA) recommend a two-step testing process:

Perform an initial screen on stool samples using a test for glutamate dehydrogenase (GDH). This test is considered to be very sensitive.
Follow up positive screening results with a specific test for the toxin or the gene that codes for the toxin.

When is it ordered?
------------------
Tests for C. difficile toxin may be ordered when a hospitalized patient has frequent watery stools, abdominal pain, fever, and/or nausea during or following a course of antibiotics or following a recent gastrointestinal surgery. It may be ordered when someone develops these symptoms within 6-8 weeks after taking antibiotics, several days after chemotherapy, or when a person has a chronic gastrointestinal disorder that the doctor suspects is being worsened by a C. difficile infection. Tests for C. difficile toxin may be ordered to help diagnose the cause of diarrhea when no other discernable cause (such as parasites or pathogenic bacteria) has been detected.

When a person treated for antibiotic-associated diarrhea or colitis relapses and symptoms re-emerge, C. difficile toxin testing may be ordered to confirm the presence of the toxin. Testing should not be ordered to monitor the effectiveness of treatment or on those who are symptomatic. A subsiding of symptoms (diarrhea ceases and stools are formed) indicates a cure from infection.

What does the test result mean?
-------------------------------
If tests for C. difficile toxin are positive, it is likely that the person's diarrhea and related symptoms are due to an overgrowth of toxin-producing C. difficile.

Negative test results may mean that the diarrhea and other symptoms are being caused by something other than C. difficile. Since the toxin breaks down at room temperature within 2 hours, a negative result may also indicate that the sample was not transported, stored, or processed promptly. If there is a concern that a stool specimen has not been collected and processed properly, a repeat test may be performed.

Is there anything else I should know?
-----------------------------------
If a person has positive C. difficile test results, the doctor will typically discontinue any antibiotics that the person is taking and prescribe an appropriate treatment of oral antibiotic, such as metronidazole or vancomycin, to eliminate the C. difficile bacteria.

An endoscopic procedure can be used to diagnose C. difficile colitis. A specialist (gastroenterologist) can examine the colon and biopsy any characteristic pseudomembranous lesions that may be present.

Last edited by MomofIBD's; 03-23-2012 at 06:51 AM.
03-23-2012, 07:14 AM   #7
Devynnsmom
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Shelley,
I don't have any advice, but I hope you get answers and he is feeling better soon.
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
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03-23-2012, 09:43 AM   #8
imaboveitall
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MomofIBD's, THANKS, wow, I had no idea!
V's doc was the one who told me "you'll know it if she ever gets it" and described how distinctive it is...but yet he tested for it at every f/u (not anymore but back in the day in 08-09) though she had no symptoms of it ever because I guess some can present as you described!

I love learning from this site...you guys all rock
03-23-2012, 11:21 AM   #9
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imaboveitall, No problem! Most people present as you described but some with more or less intensity. But with CD, my boys gas/poop smells foul often in our house!!!! But your right it is a little different & does have a different odor. I guess my concern is when our children are on the Flagyl (which is used to treat C-Diff) for weeks/months at time. It sets up perfect conditions for C-Diff. Especially in Daniels case of also being combined with Prednisone or another immune compromising drug. If you are not on a Pro-biotic you should be in conjunction with the Flagyl. In fact I think taking a Pro-biotic should be more main stream with taking most antibiotics especially if your taking one more than 10 days. My DIL's UC was caused by taking one for an infection after the birth of her first son. She is now in the process of getting ready to have a Colectomy done in the near future. I don't know if the pro-biotic would have prevented the [email protected]!! she has gone through the last 3 + years! It's too late now we will never know.

If only more Dr's were vigilant or believed in having a pro-biotic with their prescriptions! Like they are with their antibiotics! I wonder how much PAIN, SUFFERING, & MONEY would be saved each year!????
03-23-2012, 12:18 PM   #10
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Oral clindamycin did that to Alex, he tested negative for C diff. Scary stuff. Probiotics really did seem to help, we used Culturelle. Hope it clears up for him soon! <hug>
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03-23-2012, 01:00 PM   #11
Mom2oneboy
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Poop was delivered to the lab at 8am this morning. Now we wait...and wait...wait. They say we should know this afternoon. I'm giving them a couple of more hours then I'll be calling.

Thanks for all the feedback and support!
Shelley
03-23-2012, 01:44 PM   #12
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Fingers, toes, (my eyes if they wouldn't stay that way) crossed!!!!! Not sure who is to call you. But it was our Dr's office that did. In fact it was after hours that he called to let us know. I know we can go to the hospital for lab results....not sure if you can get them over the phone because of HIPPA.
03-23-2012, 02:01 PM   #13
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Fingers, toes, (my eyes if they wouldn't stay that way) crossed!!!!! Not sure who is to call you. But it was our Dr's office that did. In fact it was after hours that he called to let us know. I know we can go to the hospital for lab results....not sure if you can get them over the phone because of HIPPA.
I'll be calling the doc's office. Did your son have any side effects from the Vanc?
03-23-2012, 02:12 PM   #14
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No.....not a one! He tolerated it pretty well. He took it with food too. It's major heavy duty, but it's the only other med that covers except Flagyl! I'm pretty sure unless they have something new! Oh I hope you have good insurance! $1,000 for about 25 pills before my insurance covered it. Ouch! Well we are getting ahead of ourselves!!! I am still crossing everything!!!
03-23-2012, 02:20 PM   #15
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Holy guacamole! Thanks for the warning! Wonder if it makes a difference if they can't take the flagyl due to allergic reaction?
03-23-2012, 03:36 PM   #16
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Don't think so the drug company still needs it's pound!!!
03-23-2012, 03:38 PM   #17
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Good luck Mom! Fingers, toes and everything else crossed that the test is negative!

Dusty. xxx
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03-23-2012, 04:56 PM   #18
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Grrrrr! Lab tech was wrong this morning. Cdiff tests are sent to another location and results won't be ready until tomorrow around noon. Guess what tomorrow is......Saturday!! I'm sure I won't hear anything until Monday.

I refuse to get tied up in knots the next few days. It is out of my control. We will continue to watch him closely, monitor bms for any change in blood, make sure there is no fever, etc. If at anytime things look like they are getting worse we will go to ER.

He had his first dose of VSL #3 today. So we shall see how that goes.

S is outside playing basketball so I'm off to join him and enjoy the sunny and 80 degrees we have today.

I hope everyone can find a little joy and peace this weekend!
Shelley
03-23-2012, 05:57 PM   #19
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My Chloe had C-diff at age 18 monthes. My little one had problems with weight loss and poor appetite. The GI in Hershey found it. We are not sure how long she had it, but definetly diareha. She was on her first antibiotic when she got it. We used compounded flagyl and worked great. She was in the hospital for dehydration with the stomach flu at age 21/2 and they tested her again. I think once you get it they continue to test.

Hang in. It is fustrating when you wait for a phone call and the stuff gets messed up. Good luck!!!
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03-24-2012, 06:47 AM   #20
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That stinks Shelley! You know the hospital doesn't close. Figure out when out patient labs closes today. If it's noon time call them 15 minutes before & see if they have the results in. You don't have to wait for your Dr. It's your information! In fact call them first thing this morn & ask them what their policy is for getting that info to you is. Whether you have to sign something or if you can get verbal via the phone.
If you don't get the results keep busy & try to enjoy your weekend with your family!
03-24-2012, 04:21 PM   #21
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I read about using fecal transplant to treat c. diff. infections. The woman they profiled had it and traditional efforts to treat it weren't having much success. The fecal transplant produced amazing results after the 1st session (I believe the treatment consisted of four transplants in total). I don't know whether doctors/hospitals in your area consider this a potential treatment (if your child has it) but it might work both on the c. diff and IBD too.

A doctor in this province, with a patient who'd contracted c. diff. in hospital, prepared to do a transplant because traditional treatments weren't working. He'd set everything up and found/tested/prepared the transplant when the hospital vetoed the procedure. They said they wouldn't permit it until they had studied, consulted and prepared written guidelines for same. Meanwhile, the patient (their victim) continued to deteriorate. I'm hoping that, should the need arise in your son's case, the medicos will fully co-operate.
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03-24-2012, 11:38 PM   #22
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I just wanted to add that izz was misdiagnosed with c diff prior to her crohns dx. She is a carrier of c diff, but it isn't actively producing toxins, therefore it isn't what is making her sick. (Sadly I found this out after 2 rounds of compounded flagyl, which tastes nasty, btw!) They had to do three stool cultures before they found it but didn't check for toxins, so she was on precautions unneccessarily (and stuck in her hospital room ). Hope its neg but if not bleach wipes are your new best friend!
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03-26-2012, 01:04 PM   #23
imaboveitall
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Angie, Violet is TOO.
I got a call from a nurse (way back, this was maybe 09):
"Guess who is pos for c-diff?" (Yes verbatim ) "she needs to start Flagyl".
Me: She has perfect stools, I doubt that.

I emailed The Saint. His reply: "Not all pos c-diff do we treat, some test pos who are just carriers, no treatment needed unless she develops symptoms".

Apparently C-diff can be present but not overgrow to the point of "infection".
06-16-2013, 07:37 AM   #24
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Hi all, I am a newbie to this thread and hope that someone can point me inthe direction of where to put a new topic. I am hubby's caregiver and he has his second round of cDif and I am about to go out of my mind, I am so stressed and live in a little town in NB canada with nowhre to turn for good info. I just want to run away and need some support and info thanks all
06-16-2013, 07:58 AM   #25
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Hi SandraS
My Grace has dealt with cdiff. It's horrible. Does your hubby also have IBD?
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06-16-2013, 09:28 AM   #26
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I dont know if he does or not, he has never been tested but by what I have read it sounds like something is going on other than the cd, last year he had bleeding in his stool a lot, like fill the toilet and that went away but being him he wont go to the dr, so now it is the stinking cd, it is so terrible, cant go anywhere, do anything, I feel like my life is over and he is the one dealing with it
06-17-2013, 05:34 AM   #27
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Hi all, I am a newbie to this thread and hope that someone can point me inthe direction of where to put a new topic.
Hey Sandra,

I see you have worked out the system.

I am sorry to hear about your husband and I hope he is able to get answers and relief very soon! Good luck!

Dusty. xxx
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