I HAVE C-DIFF

Clostridium difficile - C. difficile - CDI

WHAT DO I DO NOW?

WHO AM I?

Let me begin by saying I am not a doctor. I have no medical experience. Before starting any new diet, regimein, or medication, you should consult with your doctor.

So who am I? I am a c-diff survivor and would love to provide an inside look into the illness and provide tips and information from my experience with c-diff. Once I was diagnosed with c-diff I found all of the information online very confusing and frightening. I have compiled the best information I could find right here in one organized place. I will also tell you how I got rid of c-diff and what I currently do to prevent c-diff from reoccurring.

Read My Story

EVERYTHING YOU NEED TO KNOW ABOUT C-DIFF

HOW DO YOU GET C-DIFF

C-DIFF SYMPTOMS

***Symptoms

Some people carry the bacterium C. difficile in their intestines but never become sick, though they may still spread the infection. Signs and symptoms usually develop within five to 10 days after starting a course of antibiotics, but may occur as soon as the first day or up to two months later.

Mild to moderate infection

The most common symptoms of mild to moderate C. difficile infection are:

Watery diarrhea three or more times a day for two or more days
Mild abdominal cramping and tenderness

Severe infection

In severe cases, people tend to become dehydrated and may need hospitalization. C. difficile causes the colon to become inflamed (colitis) and sometimes may form patches of raw tissue that can bleed or produce pus (pseudomembranous colitis). Signs and symptoms of severe infection include:

Watery diarrhea 10 to 15 times a day
Abdominal cramping and pain, which may be severe
Rapid heart rate
Fever
Blood or pus in the stool
Nausea
Dehydration
Loss of appetite
Weight loss
Swollen abdomen
Kidney failure
Increased white blood cell count

When to see a doctor

Some people have loose stools during or shortly after antibiotic therapy. This may be due to C. difficile infection. See your doctor if you have three or more watery stools a day and symptoms lasting more than two days or if you have a new fever, severe abdominal pain or cramping, or blood in your stool.***

***https://www.mayoclinic.org/diseases-conditions/c-difficile/symptoms-causes/syc-20351691

Remember you can get c-diff months after finishing your antibiotic! This happened to me. Also many people say

c-diff poop is yellowish in color (which I had) and has a distinctive overpowering smell (I did not have).

FIRST STEP

Common 2 ways

Antibiotics: C-diff bacterium is found in many peoples stomachs. However, good bacteria keeps c-diff growth in check so you would never know you had it. Antibiotics wipe out all the good bacteria in your tummy, allowing c-diff to spread like wildfire.

From an infected person: You can also become infected from another persons fecal matter (fecal to oral route) if they have c-diff, even if their c-diff is asymptomatic.

Go See Your Doctor

If you think you might have c-diff, go see your doctor immediately. They will most likely take a stool sample or refer you out to a diagnostic center for stool sample testing.

If you are meeting with your primary care doctor, have them refer you to a trusted Gastroenterologist, if you don't already have one. They will be more skilled at managing your medication.

Write down all your questions and concerns before your visit. You can also write down their answers so you wont forget!

TREATMENT OPTIONS

More antibiotics

Ironically, even though antibiotics can cause c-diff, they can also get rid of it.

Most treatment for mild to moderate infections begins with metronidazole (Flagyl) an oral antibiotic. I had terrible side effects from this antibiotic. It has been argued by some that the antobiotic's side effects can be worse than the c-diff symptoms themselves. However do not fear! Most infections are cleared up with one round of this antibiotic. I took Flagyl for ten days. With my insurance it cost me $10.

***For more severe and recurrent cases, vancomycin (Vancocin), also taken by mouth, may be prescribed.

Another oral antibiotic, fidaxomicin (Dificid), has been approved to treat C. difficile. In one study, the recurrence rate of C. difficile in people who took fidaxomicin was lower than among those who took vancomycin. However, fidaxomicin costs considerably more than metronidazole and vancomycin. Common side effects of vancomycin and fidaxomicin include abdominal pain and nausea.*** Vancomycin cost me $300 for a ten day supply! AHHHH

***https://www.mayoclinic.org/diseases-conditions/c-difficile/diagnosis-treatment/drc-20351697

If all else fails and usually as the last option, there is the fecal transplant. EEEEEKKKKKK. The first time I heard of a fecal transplant I was horrified, but after a few days of c-diff I would happily get a strangers poop pumped into me.

What is a Fecal Transplant?

Fecal Microbiota Transplant

***Fecal Microbiota Transplant (FMT) is a procedure in which fecal matter, or stool, is collected from a tested donor, mixed with a saline or other solution, strained, and placed in a patient, by colonoscopy, endoscopy, sigmoidoscopy, or enema.

The purpose of fecal transplant is to replace good bacteria that has been killed or suppressed, usually by the use of antibiotics, causing bad bacteria, specifically Clostridium difficile, or C. diff., to over-populate the colon.

And there are many patients who have never even heard of this treatment, even though the success rate for treatment of recurrent C. diff. is estimated to be well over 90%.***

***http://thefecaltransplantfoundation.org/what-is-fecal-transplant/

I did not have to have a fecal transplant, but my friend who had c-diff for 8 months had this procedure and it was a success!

Many doctors do not know of this procedure and if your doctor does not mention this option to you, then it's time to get a second opinion!

Probiotics

You have options here as well. Natural food probiotics are great and probably the best option at delivering probiotics naturally, however I had a very hard time eating when I had c-diff so supplements worked better for me.

Supplements

Used in conjunction with other treatments, probiotics are used to get rid of c-diff faster and used to prevent reoccurence.

The first probiotic I suggest is Florastor! AGAIN CHECK WITH YOUR DOCTOR BEFORE TAKING ANY MEDICATION. I Came across this PROBIOTIC on a c-diff forum site. It is one of the only probiotics that can survive while taking antibiotics and is proven to reduce c-diff reoccurrence. You can find coupons on their website Florastor.com and you can locate stores that sell them on their website. Many Cvs's have them.

****studies show that adding the yeast-based probiotic Saccharomyces boulardii (sold under the brand name Florastor®), can cut the rate of recurrence by about half.***

***https://www.eurekalert.org/pub_releases/2008-04/bi-rrc042908.php

I have also taken Culturelle, Align, Trubiotics and Ultimate Flora at various times. If you currently have a c-diff symptoms ask your doctor about Florastor. I still take it everyday and am a big advocate. It does not need a prescription, but its best to ask your doctor before taking it.

Take your probiotics as far spread out between antibiotic doses as you can. This increases the good bacteria's survival rate. Some probiotics need to be refrigerated, so keep that in mind. Also never leave probiotics in the heat, even if they don't need refrigeration. This can ruin them. Also probiotics can be pricy! Do you research to find the best fit for you. I doubled up Florastor recommended doses while on the antibiotics.

While genreally safe, probiotics are not for everybody.

***They can trigger an allergic reaction. You might have stomach upset, gas, diarrhea, or bloating. Those symptoms usually go away after your body gets used to them.

If you have an immune system problem or another serious health condition, you may have a greater chance of issues. Some reports have linked probiotics to serious infections and other side effects. The people most likely to have trouble are those with immune system problems, people who've had surgery, and others who are critically ill. Don't take probiotics if you have any of those issues.***

***https://www.webmd.com/digestive-disorders/probiotics-risks-benefits#1

Probiotic food sources

Prebiotics are nondigestible carbohydrates that stimulate the growth and activity of healthy bacteria species in the large intestines. Probiotics are live microorganisms present in fermented food or supplements and offer health benefits to the human host. The use of prebiotics and probiotics together is called microbiome therapy. You don't need prebiotics for probiotics to work but it greatly increases the survivabilty of the probiotics if you have prebiotic material in your stomach.

The problem with probiotic food sources is that the range of options here seemed horrible to me when I was sick and nauseous. While I love Sauerkraut on a good hotdog. That was the last thing I could imagine eating in my state.

Make sure you check the back of all food labels. It must say "contains live and active cultures" to contain proboitics. Not all yogurts and pickles have proboitics so you gotta do your research.

I will tell you some of my go-to foods in the next section "What to Eat"

WHAT DO I EAT WHEN I HAVE C-DIFF?

Keep it bland! Stick to the B.R.A.T Diet.

You don't want your food to make your diarrhea any worse!

You need to have:

***Plenty of fluids. Choose fluids containing water, salt and sugar, such as diluted fruit juice, soft drinks and broths.
Good nutrition. If you have watery diarrhea, eat starchy foods, such as potatoes, noodles, rice, wheat and oatmeal. Other good choices are saltine crackers, bananas, soup and boiled vegetables. If you aren't hungry, you may need a liquid diet at first. After your diarrhea clears up, you may have temporary difficulty digesting milk and milk-based products.

Avoid:

milk and dairy products (except for probiotic diary foods such as yogurt)
fried, fatty, greasy foods
spicy foods
processed foods, especially those with additive foods
pork and veal
sardines
raw vegetables
rhubarb
onions
corn
all citrus fruits
other fruits, like pineapples, cherries, seeded berries, figs, currants, and grapes
alcohol
coffee, soda, and other caffeinated or carbonated drinks
artificial sweeteners, including sorbitol***

***https://www.healthline.com/health/what-to-eat-when-you-have-diarrhea#foods-to-avoid

Eating enough food was one the most difficult challenges I faced when I had c-diff. No exaggeration, it would take me over an hour to eat a piece of toast. My nausea was so bad. I lost 25 pounds in 3 and a half weeks. I was already at a healthy weight and after the 25-pound weight loss so I was dangerously underweight. It's important to try to eat as much as you can, so you can stay strong and help your body fight the illness off. You especially need to eat before taking your antibiotics (if your antibiotic instructs this). This will make the antibiotic easier on your stomach.

My go-to meals.

When I didn't feel like cooking I would get two plain baked potatoes from Wendy's drive thru. I bought a huge tub of plain Greek yogurt at the store and would top my potatoes with it (it taste just like sour cream). Id' let them cool a bit so not all the good bacteria would get killed off.
Live Kambucha Soda
Sports drinks (Provided needed calories as well)
Sprite (soda and sports drinks may not be the best but I wanted them and could tolerate them)
Pedialyte® helps prevent dehydration and replace nutrients and electrolytes lost through vomiting and diarrhea in adults, children & infants.
rice in chicken broth
plain mashed potatoes
pickles https://bubbies.com/
apple sauce
toast with peanut butter and banana
broth
crackers
oatmeal with banana
water, water,water

Your diet is very important for your recovery! Make sure you are replenishing all the nutrients and water you are losing. I had to go to the hospital because of dehydration. Try your hardest to drink, drink, drink!

HOW TO PREVENT REOCCURRENCE AND SPREADING C-DIFF TO OTHERS

LIFE AFTER C-DIFF

THE FUTURE OF C-DIFF

Recurrent infection

Up to 20 percent of people with C. difficile get sick again, either because the initial infection never went away or because they're reinfected with a different strain of the bacteria. But after two or more recurrences, rates of further recurrence increase up to 65 percent. (This does not included the fecal transplant so you still have that option if antibiotics don't work)

Your risk of recurrence is higher if you:

Are older than 65
Are taking other antibiotics for a different condition while being treated with antibiotics for C. difficile infection
Have a severe underlying medical disorder, such as chronic kidney failure, inflammatory bowel disease or chronic liver disease

AHHH THIS IS SCARY! But we can up our chances of success by following some guidelines.

1. Don't take antibiotics unnecessarily!

Some doctors give out antibiotics like candy. The increase in c-diff diagnoses is correlated to the over prescribing of antibiotics. The Flu and colds don't need antibiotics. Make sure in the future you discuss with your doctor your concerns and let them know you've had c-diff before. Unfortunately sometimes you can't avoid them and they must be taken. Remember to take probiotics during treatment and long after you've completed your round of antibiotics to prevent a c-diff reoccurence. Your doctor might recommend taking Flagyl or Vancomaycin along side your antibiotics to help prevent c-diff. Some antibiotics carry a lower risk of c-diff reoccurence than others. Always finish your antibiotics. Many people stop half way because they think they are cured, however this can increase the likely hood of the infection not being treated and needing another round of antibiotics. Here's a list of high to low risk antibiotics. This list was pulled from a c-diff forum site (compiled by many of the forum site's users) not a medical site. So take this information with a grain of salt.

***LIKELY TO CAUSE C. DIFFICILE:
Clindamycin
Keflex
Ceftin
Ceclor
All other cephalosporins
Amoxicillin
Augmentin

MIDDLE OF THE ROAD:
Cipro
Levoflex (also Levaquin)
Tequin
Avelox
Bactrim
Erythromycin
Biaxin
Zithromax

SAFE TO TAKE:
Macrodantin (Macrobid)
Sulfa
Aminoglycoside
Flagyl (metronidiazole)
Oral and IV Vancomycin

As you'll see, Cipro is considered moderately safe/dangerous. Many posters have recommended taking probiotics in proximity to the antibiotic;.***

***http://www.cdiffdiscuss.org/PHPBB3/viewtopic.php?t=12152

Just because you've had c-diff before doesn't mean you will 100% get it again while taking antibiotics, but your odds do increase significantly. However, I know a few people who have previously had c-diff and have taken antibiotics successfully with no reoccurence. I myself have not had to take antibiotics since last getting c-diff and I avoid antibiotics like the plague.

2. Clean Clean Clean (with Bleach!) and prevent reinfecting yourself and others

Did you know you can reinfect yourself with c-diff spores from your own fecal matter? That's right! Even if you've gotten rid of c-diff, uncleaned areas with c-diff spores can reinfect you!

****C. difficile spores can be shed to the environment by both asymptomatic and symptomatic patients and may survive for up to 5 months on inanimate surfaces (17).***

***https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4313175/

Wash Your hands!!! Sing happy birthday twice and that's how long you should wash your hands. After a bowel movement you can also wear gloves to hold the toilet paper and then dispose of after each use to help decrease c-diff from spreading.

Lysol, household cleaners, and hand sanatizers don't don't kill the hearty c-diff spores! You must clean toilet handles, toilet bowls, sink handles, remotes, bathroom light switches, etc. with bleach. You cannot be too clean! if you can use your own bathroom and have other housemates use a separate toilet, that would be ideal.

Dispose of soiled underwear. Washing soiled underwear can spread spores to other clothes and into you washer. (buy a bulk bag of cheap underwear or consider diapers if you keep soiling your underwear)

Wash bedding and clothing often and in the hottest setting of water. Heat helps kill more spores! If you wear whites you can bleach them for the best protection.

Run an empty load with just bleach to sanitize your washer in between uses to help protect others from infection.

Avoid preparing meals for others if possible. If not possible, then was your hands extremely well before preparing each meal.

Avoid hospitals if you can. Hospitals carry the most resistant strands. Although if you or a loved one is in the hospital don't worry. Just try to stay as clean as possible and wash hand thoroughly after using restrooms.

You can only spread c-diff from fecal matter so hugs and kisses are fine!

3. Avoid sick people

Avoid sick people then you avoid getting sick and needing antibiotics. Say no to strep throat.

4. Take Probiotics

As previously stated, continue taking probiotics even after you have gotten rid of c-diff. Again, Florastor is my personal favorite. Take a good variety and eat a good variety of probiotics to build back up the good bacteria that the antibiotics wiped out.

Taken with antibiotics and after can greatly increases you chances of stopping c-diff from reoccurring.

Growing rapidly in cases year to year for the first time it looks like c-diff rates are now declining.

***The rate of new Clostridium difficile or C. diff infections climbed year after year from 2000 to 2010, researchers found. But an early look at 2011-2014 data from the Centers for Disease Control and Prevention's Emerging Infections Program suggests infection rates are improving... thanks to new guidelines on antibiotic use and stricter cleaning standards in care facilities..***

***https://www.npr.org/sections/health-shots/2017/06/29/534870581/c-diff-infections-are-falling-thanks-to-better-cleaning-and-fewer-antibiotics

There's new treatment options that may soon become available in the Us and is already available in some countries.

***'Poop pill' capsule research paves the way for simpler C. difficile treatment

Fecal pill effectiveness is similar to more invasive treatment for stubborn intestinal infection

Date:

December 1, 2017

Source:

University of Calgary

Summary:

A clinical trial has shown Fecal Microbiota Transplant (FMT) is effective in treating clostridium difficile (C. difficile) infections whether delivered by colonoscopy or by swallowing capsules. The finding could revolutionize and broaden the use of FMT, which restores the healthy balance of bacteria living in the intestine by transferring a healthy donor's stool to the gut of a person with C. difficile.***

***https://www.sciencedaily.com/releases/2017/12/171201091026.htm

There are even some vaccines in the works for c-diff prevention and cure.

***Vaccines appear to be a promising intervention that provides long-term protection against CDI episodes, and several are in various stages of development.***

***https://www.infectiousdiseaseadvisor.com/clostridium-difficile/status-of-clostridium-difficile-vaccines/article/646015/

So the future of c-diff doesn't look so bleak!

What can you do to help the c-diff cause?

Don't take antibiotics unnecessarily.
Tell your c-diff story! Awareness can help others dealing with c-diff or help the public become aware of this problem.
Wash your hands well and frequently.
Enjoy your life! Don't let the fear of c-diff ruin your future. Eat, drink and be merry!

After my first c-diff free stool sample Wahoo!!! I continued to have bouts of diarrhea not normal to me before c-diff. I would get tested and it would come back negative for c-diff. My doctor said this was normal and my body was healing. So make sure you stay on top of this and get tested if you continue to have diarrhea, but just know your body may take a while to revert back to normal and honestly some people never fully go back to normal. I also was diagnosed with post infection IBS. Sodas, coffee, red meats, and especially alcohol would ruin me. If I drank half a glass of wine I would wake up in the middle of the night with horrible stomach pains, diarrhea, and in cold sweat feeling like I was going die. After a full year though I am almost 100% better! I have gained back most of my weight and can eat almost anything I want. However, coffee and alcohol still give me problems.

Mentally I needed lots of work. I developed a huge fear of sickness (needing antibiotics) and fear that c-diff would come back. I will never wash my hands the same. I always sing two happy birthdays while washing my hands after using public restrooms. I already suffered from anxiety and this set me back in many ways. However, there is hope! C-diff was so scary because I didn't know anyone who had it. Now you know me! Also mine was more moderate/severe so it prevented me from working and functioning normally. However, my co-worker had it for almost a year and she seemed unfazed by it and participated in her normal activities. So there is a wide spectrum of symptoms and severity.

Don't worry! Online information can be frightening, but hopefully now you know some good tools to deal with this or help a loved one! It's important to stay on top of it. Don't be afraid to annoy your doctor to get the answers you need.

Surround your self with a support system. Don't be afraid to ask for help. I stayed with my newlywed sister and her husband for three months while I was sick and recovering. I'm sure they hated that HA.

The most important information I can share is about probiotics and the fecal transplant! Make sure you are actively communicating with your doctor and doing what you need to do to get better!

The truth is c-diff can be serious and even life threatening, however, there is hope! Now that you have more knowledge and tools, you can stay on top of it! Don't stress!! Stressing will only slow down your recovery. Just be open with your doctor, eat, drink, and take your medicine!

Good Luck my c-diff friends! I wish many happy c-diff free poops in your future!

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