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Is it Colitis Symptoms or C-Diff…There IS a Difference

Hey UC’ers,

I hope you all are doing well, and I wanted to send out a quickie message since there is a bit of a nasty distant relative of ulcerative colitis that we all should be on the look out for.  His (maybe it’s a she…ok ok…) name is C-diff.  Or as some of the scientists might call it:  Clostridium difficile Infection.

You can find all sorts of information online, here is a link from the Center for Disease control about c-diff: http://www.cdc.gov/HAI/organisms/cdiff/Cdiff_infect.html

C-diff is unfortunately more common with folks who have UC.  I myself have come down with it a few times and its not pretty, sure doesn’t smell pretty, and it often has very similar symptoms to ulcerative colitis.

 

c-difficile cartoon

If you had a big group of UC’ers in a room, there would be a very good amount of them who have been dealt the unfortunate experience of going through a c-diff infection and treatment.  And it is a bit scary cause like symptoms of colitis, you’re often running off to the restroom with some urgency, maybe some bad cramping, and it can get out of control pretty quickly.

The good news is that there are a few ways to treat it.  The most common way is with antibiotics, however there is a recent move with a growing amount of scientific studies mentioning the use of fecal transplants to cure the c-diff as well.

Heck, there was even an interview we conducted on the site where this exact topic and fecal transplants was talked about by two different doctors (one being my very own gastroenterologist Dr. Stollman who was one of the lead scientists in a study about c-diff and fecal transplants or FMT).  That story is here: Fecal Transplant Question and Answer Interviews

So, the reason for this post is simple, be aware that c-diff and UC are very different, however the symptoms are often the same.  Treatments can be different as well, so when in doubt…talk to your doc and request a stool sample test to rule out c-diff, especially if you are having a super hard time getting past UC symptoms that just don’t seem to be responding or if you just think something else might be up besides the UC symptoms you may be used to.

Best of luck to you all with a great rest of the week, and great rest of the summer (northern hemisphere folk:), it’s not tooo far away Australianos either:)

To hard poops and single toilet paper wipes for all,

Adam




c-diff

18 Responses to Is it Colitis Symptoms or C-Diff…There IS a Difference

  1. Amy August 5, 2015 at 3:35 pm #

    I have had C Diff 15 times in the past year and a half. Tried every drug and every combination, nothing would work. I got down to 103lbs (I am 5’5) couldn’t tolerate food, almost died from being so depleted of nutrients and fluids. This is a very serious condition, especially for the elderly. I finally had a fecal transplant that worked for me, but I had to wait for 6months for the study and myself to be approved. Fecal transplants are not easy to get and mos UC and Crohns patients do not qualify….my colon has been so damaged by c diff and severe colitis that I have to have my colon removed due to scar tissue. TELL YOUR DRS TO WASH their hands with water and soap, especially while you are in the hospital, hospitals are feeding grounds for c diff. It is your right to tell ANYONe who comes in to contact with u to WASH hands with soap and water first. Anti-bacterial does not kill c diff. Always WASH hands after using the restroom. And PLEASE take probiotics of you ever get on antibiotics. I would also advise against anyone with UC to take cipro because that is the strongest anti-biotic and causes c diff in a lot of patients. People are so uninformed about this disorder. I am not even sure how long I actually had the infection before being tested and treated for it. Usually white blood cell count is elevated but that is not always the case. Thank you so much for discussing this topic.

  2. Amy August 5, 2015 at 3:38 pm #

    Oh and by the way I am 26 years old. If I was an older person I would be dead by now.

  3. Kim August 5, 2015 at 3:57 pm #

    I had c diff for 4 months straight. Medication just wouldn’t touch it. Probiotics didnt help at all. Finally my GI sent me to an infectious disease specialist and he put me on a drug called Dificid. He also took me off of all colitis medication to give my immune system a chance to strengthen and fight off the c diff. Finally I got a negative stool sample.

    When I first got c diff, I didn’t know what it was and my GI never thought about it being c diff. Just a stubborn flare. There was also nothing indicating that i had been exposed to it. I hadn’t been on antibiotics, or hospitalized. I just felt different. For me, the way i tell is that i along with the usual diarrhea, cramps, etc. I always had lower abdomo al pain that was more like an aching feeling in my pelvic area. I dont get this ache with my colitis. My GI just didn’t think it could be c diff. It wasn’t until it put me in the hospital that someone finally tested me for it. After 4 months of medications, I was happy to get a negative result. Getting a fecal transplant in Alberta is not obvious. Now when I have what seems like colitis symptoms, my GI will always do a stool test for c diff.

  4. Cara vainish August 5, 2015 at 4:39 pm #

    My 14 year old daughter tested positive for C Diff I think it was from the acid reflux medicine she has been on for three years. She has UC . We were able to get a FMT procedure approved by our insurance. This is the only approved disease for a FMT
    Procedure. There are quite a few clinical studies being conducted around the world .
    We tried 20 home treatments to see if we could calm her UC. But she had a flare and the treatments stopped It did get rid of her C Diff I would recommend avoiding antibiotics a and go straight for the FMT procedures

  5. liz August 5, 2015 at 5:42 pm #

    Thanks for this Adam. I had a c.diff infection years ago and thought I knew what to look for – you don’t forget the smell. BUT… maybe we get used to flaring and excuse everything as a flare. I’d recently been in a flare for 3+ years and it finally looked like Entyvio was working, and then I started spiraling backward again. Like you said, no blood, but ended up in the emergency room where they said I needed an emergency colectomy, and it turns out I had a raging c.diff infection! We think there’s a good possibility that c.diff was the culprit of my disastrous intestinal deterioration… if only I’d thought to check for that sooner, I might still have my colon, i might be able to say entyvio worked for me, and/or might have qualified for FMT, finally! (I’m in the states, so c.diff is the only way unless you’re cool with DIY). I did meet with an FMT specialist in NYC before my semi-emergency surgery who seemed pretty awesome, but I was too far gone to do the procedure. However, if anyone out there in the Northeast is looking for FMT for C.Diff, check out Dr. Ari Grinspan at Mt.Sinai, he was really friendly and enthusiastic, while somehow still coming across as professional and knowledgeable. Seemed like a cool guy.

  6. Alex August 5, 2015 at 6:43 pm #

    I had c diff with my first flare up after taking antibiotics for a sinus infection. Flagyl is a popular drug to treat c diff and even is just given to treat Crohn’s for some reason even without c diff. For whatever reason it made me about 10 times worse. I’d recommend vancomycin to anyone that gets c diff.
    As to why inflammatory bowel disease people get it more often I’m not sure. I was told by my doctor that I could test positive for it for months after having it. As Amy mentioned hand washing with soap and warm water is huge especially when using public bathrooms.

  7. Sweden August 6, 2015 at 12:54 am #

    Hi!

    Thanks for the article! I have also had experience of C-diff. I got it from eating an antibiotics called Klindamycin. When I called my UC nurse she said right away:”Oh, that medicine will giva you C-diff”. Not so much fun to get that medicine in the first place!

    I had it for 6 weeks and got antibiotics. I was home from work 10 days or so but then the doctors wanted me to work. Strange when you think about how easy C-diff can spread to someone else. And of course it was scary with the possibility to infect my children at home, trying to clean and clean the bathroom with clorine bleach.

    Now I know which medicine to awoid!

    Best regards!

  8. Amy C August 6, 2015 at 5:52 am #

    I’m 33 and have had UC for 14yrs, I got my first C-diff infection after a dose of Kelflex prescribed by an ER doc b/c I was having a severe reaction to a Wasp sting. I didn’t know it was C-diff when I was having symptoms, but my GI doc right away said Kelflex is known to cause C-diff in IBD patients. To make things worse, I had a rare allergic reaction to Flaygel, stiff neck pounding headache, that the next ER doc thought was Meningitis (a weekend call to my GI dismissed that and suspected the allergic reaction) got on Vancomycin and everything cleared up. Lesson learned is that my GI knows me and UC better than any ER doc, and I should always give him a call when I’m prescribed medicine I’ve never taken before.

    • Elaine J
      Elaine J August 22, 2015 at 3:12 pm #

      thanks for the information about Cefalexin and ciproflaxalin (as they are called here in the uk) – I will make a note so that if I’m ever offered them by my GP/consultant, I can say ‘no thanks!’

  9. Melissa Lawler August 6, 2015 at 3:39 pm #

    I have C Diff 4 or 5 times a year. I was septic just last month and I am having a fecal transplant next week. I really hope this works.

  10. Shelley August 6, 2015 at 8:04 pm #

    I’ve been diagnosed with UC for a little over a year. Last sunmer I was having very bad pain, watery diarrhea with lots of blood, and more. My health and weight were depleting very quickly. I ended uo having C Diff along with my UC. I ended up staying in the hospital for almost the entire summer and a few months after. During that time I had been on vancomyocin but that didn’t get rid of the C Diff so then they put me on Flagile which also didn’t work. So then they put me on an antibiotic that started with a D but I can’t remember exactly what it was called. That seemed to work for a bit because I had a negative result on one of my tests. That is when the doctors did a colonoscopy to see how bad my colon was from the UC. Apparently it was very bad. One of the worst the doctor had ever seen and she’s seen thousands. Due to this they kept me in the hospital to get meverything nutrition through the IV and a blood transfusion as well. The number of times a day I was going to the restroom had went from about 20 down to 5. But, then a week later it got worse again. I started going more frequently and they did another C Diff test. It was positive. This time they went straight for the fecal transplant. It was the worst thing I have ever experienced in my life. When they tested me again after the transplant it was positive. I ended up getting C Diff again or they thought they didn’t give it long enough time after the transplant. They put me back on flagile. I ended up having a reaction to that and got pancreatitus from that. Also terrible. So then they put me on the antibiotic that started with a D again. That seemed to work this time because when they tested me it was negative. Every test after that also was negative until March of this year. I was having the same symptoms so they ran a stool sample which showed I had C Diff again. I spent a few days in the hospital and then they sent me home on a 12 week regimen of vancomyocin 4 times a day. Luckily that worked and got rid of the infection. After that last time I have been testing negative. Thank goodness because C Diff is horrible. I don’t wish it on my worst enemy.

  11. Jennifer Schaeffer
    Jennifer August 7, 2015 at 12:53 pm #

    So funny I got this email now. I was JUST diagnosed with C-Diff. I thought I was flaring…and didn’t have a new GI doc. (We just moved from NJ to AZ). So I went to the hospital and son of a gun, I have C-Diff!

    I’m taking Flagyl right now and happy to report that I think it’s working. My GI gave me some meds to help with the stomach cramps….so far they make me fall asleep. So I guess they work? lol

    Now I’m fighting a Yeast Infection….cure one thing to cause another issue….so much fun!!!! Feel better, everyone. (Easier said than done).

  12. Amy August 8, 2015 at 4:19 pm #

    Jenifer,
    I get a yeast infection every time I take any of the antibiotics for c diff. Flagyl, vancomycin and dificid. Try to use creams and not take antibiotics! A lot of doctors aren’t very well educated on c diff so for instance if u went to a family dr they may tell u to take antibiotics for yeast infection but that’s the worst thing you can do. C Diff comes back very easily. I would test negative after antibiotics and then test positive 2 weeks after finishing antibiotics like clockwork. Fecal transplant saved my life. C diff meds are also extremely expensive. Dificid is about $2500 for a 10 day treatment. Also, if u ever go to the hospital and are discharged on antibiotics, make sure your pharmacy has them in stock before u leave the hospital! They’re really expensive and rare so most pharmacies don’t order them until someone comes in with a prescription for them. A few times I was unable to fill my antibiotics and would miss a day or two. Or go back to the hospital…not good. Shelley, if u get c diff in the future request Dificid. And to everyone with UC consult your Gi before starting any antibiotics prescribed by other Drs. (Even and kind of especially er Drs). I was hospitalized this week for dehydration and the hospitalist wanted to put me on cipro and flagyl. That’s a super inviting combo for c diff. You can and should refuse meds that you’re not comfortable with taking….again, especially by er or hospital Drs. They mostly just follow protocol and don’t see people as different cases etc. I’m very passionate about this.

  13. Carrie August 11, 2015 at 7:17 pm #

    Actually , U/C and C.diff are not even remotely related. Yes, one causes you to be more susceptible to the other and the other can aggravate the one, but U/C is an illness of inflammation and ulceration o f the lining of the colon and C. diff is a strain of bacteria. C. Diff can , however, cause U/C like symptoms, even in someone who does not have U/C.

    • Adam
      Adam August 11, 2015 at 11:05 pm #

      Thanks Carrie for adding your thoughts!

  14. Carla August 13, 2015 at 6:46 pm #

    After months of bleeding & mucus in stool & paper & my family doc telling me I had an internal hemorrhoid I went to gastro & was dx with UC. After starting on Apriso because insurance wouldn’t pay for Lialda I was still flaring & put on 40 mg prednisone taper. Then I begin having pain & swelling in both ankles which has lasted for 3 months. Went back to gastro & after having a horrible accident in my pants at the beach I was tested for c-diff & bam I have it. Now, I too, can’t figure out how I got it. No antibiotics or hospitals but somehow I have it. Taking flagyl & florastor for 1 week & still have several loose stools a day but ankle pain seems to be finally resolving. Hoping & praying when I go back to gastro I will have a neg test for it.

  15. Elaine J
    Elaine J August 22, 2015 at 3:00 pm #

    Now this is really interesting for me because when I had a flare up last summer my GP had me tested for C-Diff (it came back negative) – and C-Diff was named as a contributing factor in my mother’s death in 2007 (she had COPD and diverticulitis) – I had NO idea at all that iC-Diff was in any way related to UC. GPs here in the UK aren’t great at explaining things, they have a time limit per patient, as do NHS consultants, so as a patient you tend to feel rushed and if you dont know the right questions to ask… If I had known then what I know now, I would have somehow found the money for health insurance, but of course at the time it was hard to get it for pre-existing conditions… it may still be ,I haven’t checked.

    This article is helpful because next time I have symptoms, I will know to straightaway ask for the c-diff test, so thank you.

  16. Heather November 28, 2015 at 11:46 am #

    I am frustrated with this. I have had UC for 21 1/2 years. Yes, I’m counting. Almost died 20 years ago, at the age of 24. Had 10 rough years of almost constant prednisone, then discovered the SCD, and had 10 years of little to no disease. It was awesome! But now, I’m having a terrible year. My new GI doc, (my previous one just retired last year) has made me take a C Diff test 3 times this year and they are always negative. I have never had c diff in the 21 1/2 years. I hate it, it withholds my treatment by 1-2 weeks, in which I just get worse, and I feel like someone is getting a kick back from the lab for me spending all my money there. I don’t take antibiotics, I don’t eat in restaurants, or work around very young or very old people. I’m not in a medical environment and I’m a bit of a germaphobe and we wash hands frequently. Tired of being tested for it every single time I have a problem, even if it’s just 6 weeks since my last c diff test.

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