My Case History

Before C Diff: Appendicitis

My wife and I went to a friends BBQ one summer evening. For lunch that day we had Thai food (Phad Thai) and a few hours later I had a bit of a cramping stomach. At the BBQ party I had to sit down without moving because it felt like I had some terrible gas that was hurting me just to move. I laid in the car for 30 minutes or so, before my wife came to check on me. I didn’t think I had appendicitis, but she suspected it, and then I got on board. A few hours later I was in the ER listening to a doctor tell me that I needed surgery.

I had the surgery and was on IV Cefazolin prior to and after the surgery. Little did I know that I had picked up the CDiff bacteria somewhere in that hospital. Was it on the surgical instruments? Most likely not. Was it in the patient room? Was it on something I ate? Was it on the hands of one of the hospital staff? I’ll never know.

But, I did come home from the surgery just fine. A few days later, however, I had some diarrhea. Hmmm, that’s odd. But, then it got worse. I was going within an hour after everything I ate. I was worried something had gone wrong with the surgery, so I called the surgeon. Guess what I he told me? “Eat bland diet and call me if it doesn’t get better.” Well, it didn’t get better, it just kept getting worse.

I called the surgeon again, “Well that might suggest an infection, you’ll have to see a doctor about that.” What? You did this to me, why do I have to find another doctor, is what I was thinking. No one cares more about your health than you do! So, my online research began for what this could be.

Fixed (so I thought)

I suspected C Diff after reading a few articles. I went to a GI doctor who started me on Metronidazole and took a stool sample that confirmed the diagnosis (another story for another day). Bam, it “cured” me. Within 24 hours the cramps stopped. Within 48 hours the diarrhea stopped. Thank God!

After a few days of metronidazole, I started getting a terrible metallic taste in my mouth.  It seemed with every pill I took, the taste got worse.  It was like it was in me and I could even smell it.  I finished the antibiotic after 10 days and all was well.

If the C Diff could talk, it was saying, “It ain’t over, gimme some time.”

It’s just a cold, here take some Amoxicillin

A year went by and I had pretty much forgotten about the C Diff and my appendectomy scare had healed nicely. I caught a common cold and didn’t want it going to sinusitis, so I thought I needed some antibiotics. I went to the doctor and got some amoxicillin. On the third day, it had risen. It was gone for a year, but suddenly I felt the unique feeling of “needing to go” that it brought the first time. It’s like you need to go constantly, even if there is nothing “to go”. And when I would eat, the thunder would roll.

I immediately called the GI doctor back and he put me on metronidazole again over the phone. I was confident that this would whip it into shape again, no problem. And it did, within 24 hours again I was feeling much better.

Relapses begin

I took metronidazole for 10 days and thought I was “cured” again just like the first time.  But, two days after the last bad-tasting pill was down, I had the now familiar, low-side grumble.  I was almost home after a 3 hour drive from my Grandparents town.  I thought nothing of it at first, because, gosh, I’d just had the cure-all for most anything, antibiotics right?

Within 24 hours I was seriously reconsidering what was going on.  That antibiotic didn’t finish the job! I was blaming the anitbiotic for not working.  It seems to always take a day or two minimum to get into see a doctor and by that time I was miserable.

When I did get in he didn’t want to prescribe anything without another stool sample.  Grrrr.  One stool sample coming right up.  “Yes, you have C Diff (thanks Doc) and here is your next round of metronidazole.”  Ok, so I took another 10 days of metronidazole and started researching day and night on the internet for better information.  [TODO: insert relapse statistic here]

With this round of metronidazole, it took longer to get feeling better.  It seemed the C Diff had quite a grip on my intestines.  But, a few days into it I start feeling better.  I finish the 10 day round and cross my fingers.

My first baby is born!

A few days after the last round of metronidazole, I get the familiar grumble feeling again and, since I’m a professional stool sampler now, I go straight to the lab to get the sample kit and make a doctor’s appointment.

While I wait for a couple more days to get in to see the doctor, my wife goes into labor and we are about to have our first child!  I’m nutty with excitement.

I start feeling hot and realize I have a temperature.  Geez, I can’t be sick in the hospital while I’m in the hospital trying to encourage my wife during labor and delivery!  Yes, you can and you are.

I knew that metronidazole alone wasn’t going to cut it this time.  I needed the holy grail (to me) of antibiotics at the time, vancomycin.

I didn’t eat for two days, just trying to feel good until I could get into the doctor.  I remember washing my hands every five minutes while at the hospital trying to keep a clean environment.  While my wife is in labor I complain to the nurses that I’m getting a fever with C Diff and would love to get some vancomycin.

They confirm that I have a fever and call a doctor who prescribes vancomycin for me.  The only problem was that they had NO VANCOMYCIN in the hospital and had to start searching for some.  I was scared.  Thoughts of toxic megacolon were plagueing me while we took care of our new born baby.  I remember thinking how unfair it was that I was sick like this while we were having our baby.

Finally, vancomycin is found and it has to be picked up by one of my family members at a pharmacy far away.  My wife was in labor dilated to a 6cm and I had stayed by her the entire day until now.  I remember my brother in law showing up with a brown bag that had the good stuff  in it.  I had a fever and could barely stand with dizzyness and weakness from not eating.  I took the bag, popped some pills and headed to the cafeteria.  It had been something like 24 hours and we weren’t at a 10cm yet.  So, I thought it would be fine to run downstairs grab a sandwich and run back up.

I at the sandwich on my walk back up and when I got to the room, it had metamorphosed into a delivery room with bright lights and surgical gowns.  I got to watch the birth of my first baby, but I almost missed it.  It was, I think, the best experience of my life!

Switch to Vancomycin

sdf

Saccharomyces Boulardii

Saccharomyces who? TODO: describe more here and refer to details on Florastor page

http://russ429.wordpress.com/s-boulardii/

15 Comments - Leave a Comment
  • Shannon -

    I had sinusitis and started taking generic Ceftin 500mg 2 x a day. It was prescribed for 10 days. I took it for 4 days, 8 doses. I started experiencing severe stomach pain, severe cramping, nausea and diarrhea at least 15 times per day. I checked the side efrects of the generic Ceftin (Cefuroxime Axetil) and all of the symptoms I was having were severe side effects . My Dr. Told me to take Immodium 2 doses 4 hours apart, and 2-3 yogurts a day for probiotics. I still wasn’t better after 6 days of stopping antibiotics. I went to immediate care and stool same came back positive for C. Diff after 24 hours. I started Metronidazole 500mg every 12 hours 4 days ago. Yogurt, probiotics, fluids, electrolytes . I thought I would feel better by now. Still diarrhea 3 hours every morning, losing weight, tired, weak, can’t focus, confused. Going back to immediate care today. I want to cry. All of thisfrom an antibiotic. I also have IBS normally. Awful

  • Sue -

    My previous post was a boo boo…sorry. I am so distressed right now and feel like this nightmare is never going to end. My 83 year old mother was admitted to the hospital with pneumonia, followed by rehab. She was able to come home two days before Christmas, but on New Years Eve, she was transported to the hospital again feeling weak, dehydrated, with horrible diarrhea. Diagnosed with C Diff colitis, as well as VRE. She is now in rehab again, in isolation, still positive. If anything, she seems worse instead of better. Her quality of life right now is non-existent and at this point, it’s difficult for me to see her recovering from this. Her assisted living facility won’t let her come back until she test negative, so we may be forced to keep her in this nursing home. Sad, sad, sad.

  • elaine frith -

    Colloidial silver. My mother had cdiff with multiple hospital stays and round after round of vancomycin and flagyl. Only thing we have found that works. And probiotics daily also

  • Karla -

    I have been suffering from C diff for almost a year. Back and forth to ER’s and doctor who could not find anything wrong with me. You are completely healthy and only have acid reflux. Take Zantac 125 twice a day and you will be better in 8 weeks. Wasn’t satisfied so went to GI specialist. I had a stool sample with me and asked for it to be tested. I was denied. Went through upper and lower scopes in which I was told that my colon was completely healthy and you have sligh inflammation of the stomach. Keep taking your acid reflux meds. Then went to GI specialist at UW Madison who informed me that I was hypersensitive to pain and needed pain management and a dietician. 3 month’s later I call my original GI office crying to the nurse that I felt like I was being eaten alive. Something is living inside of me!! Please help me my stool is green I can not eat or drink anything. I have now lost almost 40 pounds. She kindly calmed me down and asked me why I have never had my stool tested. I told her that I asked 3 times, even taking samples to the ER and GI doctor. I was denied because it was not runny enough! She was flabbergasted had said she would right up orders for the doctor and get me tested. Well one day later sure as heck I have C Diff and cryptosporidium! Why did this have to take so long!!! I am now on day 3 of vancomycin. If this does not work it will be Mayo Clinic or a fecal transplant. Not wanting to live through this again!!

  • Kerri -

    I developed c-diff after taking antibotics for an infected tooth than resulted in a root canal. My dentist prescribed clindamyacin (sp?) because it is great for treating severe infections of the teeth. I didn’t question my dentist…I just took the medicine. After 2 weeks I developed stomach cramps, diaherria, and an overall awful feel so I went to see my primary care doc. She asked if I had been on antibotics in the last 6-8 weeks and I told her I had for my tooth and she said I probably had c-diff and prescribed Flagyl. Within a few days I felt better but my stomach still hurt-felt anxious though I wasn’t anxious. I finished meds, but the symptoms came back 2 days later. I was prescribed another round of Flagyl…but this time I was told to take it for 21 days. It took about 2 weeks to feel better this time (slower than last time) and by the end of the 21 days, I still had that anxious/tense feeling in my stomach (just under my ribs) and have lots of burping. I reported this issue to my doctor, she referred me to a GI doctor. I have an appointment next Tuesday, July 26th. I hope he can figure out what is wrong.
    What truly pisses me off is that my dentist would prescribe a medication that is one of THE most common causes of antibotic induced colitis ( aka c-diff)!!! Sure other meds can cause this too but how about giving me something that isn’t one of the #1 causes? I did not read the warnings on the meds…that is my fault…something I won’t ever be guilty of again! I plan to read every single warming on all drugs I’m prescribed in the future. I cannot fear antibotics but I can be informed.

  • ceebee -

    9CJ, Yes I had heart issues with c-diff, infectious diseases doc told me that was impossible, all I know is that is when the chest pain started. I see heart doc next week, will keep you posted.

  • CJ -

    I am a 67 year old woman who contracted c-diff from 2 different antibiotics. My internist prescribed one for h-pilori, which she said is responsible for my ulcer. A month later, my allergist prescribed one for my ear infection. A couple weeks later, the diarhea and mass mucus for about 5 days. Yes, I also had to wait for the results of a stool culture before treatment with Flagyl. Doctors should be dismissed if they don’t have the education to prescribe probiotics after taking antibiotics. (5vckie) Sorry that you all are experiencing such suffering.
    Get to the health food store and get you the most powerful strains of probiotics you can find. I found one that was from Kifer /coconut water
    and it had trillions of good bacteria from 11 different strains. I started taking double doses for two weeks and went through 2 bottles. Then I switched up and now take UDO’s Super 8 Probiotics daily. I don’t see myself not taking probiotics on a daily basis. Bone up and google probiotics for c-diff. Also, I am taking aloe juice to heal my intestines.
    Good luck and my prayers are with you….CJ/…@yahoo.com

  • Karen -

    THANK YOU FOR SHARING MY MYSERY!!! Your story sounds like mine. My first bout came in 06 from my dog sister. She had it while taking care of my dog. Used my lease and never cleaned it. I came home from skiing and on a Sunday started feeling excruciating back pain that went all over my body. There is started, constant bathroom trips. This went on for 4 days with fevers up to 104. Drove one day to the pharmacy wondering why bottles of pepto and immodium were not working. “Hmm that is strange we don’t know why!” Finally drove to doctor and I never heard of CDiff before. Test and results + (Not to mention I had to drive there two days 20 miles both ways). It never went away that year. Started in Feb and by Nov I was taking Vanco 2000mg via Oral and 2000 Enema!!!
    Today, Dec 2010 I have it again. UGH!!! With a sinus infection which is the cause of all the antibiotics. Now I don’t know what I am going to do. BUT you have helped me with the probiotics. I am going to get them after I type this.
    Thank you for your web site. It is very helpful.

  • PhiL in Wisconsin -

    I had C.diff for 5 month in the beginning of the year. Almost died (lost 27 lbs in a very short period). All started by taking amoxicillon for a nazal infection during Christmas 2009. Went on BRAT diet right away. Tried flagyl and it didn’t work, for two rounds. Went on Vancomycin and first round didn’t work and started second round right away. This is when I started to look for answers myself through the internet and books. I even read this site. (Thank you very much.) I started to think my family doctor wasn’t knowledgeable enough or even serious enough, so I asked for a GI speciallist/MD or infectious disease doctor. I went to Doctor Siddiqui GI MD in Appleton,WI. He had me finish the second round of Vanco (21 days straight) and then started me on a special regiment: vanco every 6 hours every other day for a week, then same every 3rd day for week, then 4 th, then jump to 7 day for a final month. I was also taking Cholestyramine 4gm powder twice daily for 4 weeks to bind up my stool ( you have to time this between the vanco as it will reduce the effectiveness of the vanco). I was also taking 2 forajens per day and eating at least 2 things of yogurt per day ( god i think that’s all ). In discussion with Doctor Siddiqui, the c.diff. spore removal as they are hatched, is the key. I asked the probability of success with this regiment, and he said ” ummm maybe 90 %.” I walked out with hope. It worked…so far, it’s been 7 months. Now i’m taking only taking 1 Forajen per day and yogurt. But i can say I watch what i eat and check my stools, and have regained weight. Other items; I think my ears ring more now after the vanco and i think I’m now allergic to anything with peanuts in it, and onions are now a bigger problem. Final comments: Go to GI specialist right away and don’t mess around with your family doctors. Also, a strange thing happened with the c. diff. lab testing… they would tell me to bring in a stool sample for testing for c.diff., and if it’s solid, the lab says it needs to be liquid to do the test?? So the doctors and the labs are not even on the same page. I also had one false negative, where they (lab) said I didn’t have it after the first round of vanco, and I told them the test was flat out wrong. When you got it, you know it. If you would like more info send an e-mail. There’s probably more that i’m missing but I hope this helps others. Phil Netzer

  • vickie -

    Hello,
    Our C-Diff story is now over a year ago. I went to Vegas, my mother in law was finishing Flayl after being with her daughter who works at a hospital and thus, where it was picked up. My kids, all have a very bad disease. Shwachman-Diamond Syndrome and Primary Immune Disease. My kids have been on all kind of antibiotics as have every parents who has these kids. Yet, I had heard of C-Diff and remember in my hospital days it occured with older pateints. I did not know how sick our family was about to become. I came home and on the airplane I remember having to go to the bathroom, not a fun place! Got home, I live super close to airport and as soon as I was there, I felt awful pain in my stomach. My youngest son was sick and so I pushed through the pain. Over the next few months I suffered from severe constipation. I tried everything and was on meds that can cause it, though it had not happened before. I go for a scope after stool samples show zip. As soon as I wake up, they are telling me C-Diff. I was like, no I have constipation? On Flayl, back at home, my kids were all having diarrehea and bad pain. We call our Bone Marrow Doctor who puts them all on Flagyl same as me. Our kids have no neutrophills to fight off bacteria and the ones they do have, do not work. They take neupogen injections and Sub Q Igg. Any bacteria can kill them, this is killing my oldest son and my other two are not well either as I have learned from some of the top doctors on c-diff, there are carriers, feel zip but spread it, like nurses, rrt which my husband is but has been out of work and back in school to try to get away from sick people, who will kill our kids. So all of this has caused their marrow to look bad on all three. These SDS kids have a chance of developing leukemia or Aplastic Anemia but many die from overwhelming infection, like C-Diff. I cannot tell you how much I wish I had never gone to Vagas and I never will again, I had never been there, don’t gamble but was there for mother in law b-day. Anyway, my oldest son has fought it for a year and I can’t get into the details but their GI doctors are pure awful doctors. They have undertreated, not treated and only our Bone Marrow Doctor wll help, though it took him a full year. Our problem is we see adult docs and they see kid docs. The labs here, never get it right. We are to go back on Vano for 21 days this time together and I will wash our sheets and clean everything again super clean. Sadly, my son needs a feeding tube and my kids just do not have what it takes. We are at the number 5 best kids hospitals and number one in GI but our kids cannot even be seen! It is sad and wrong and this C-Diff has stolen the time we had left with our kids. Many SDS patients live a longer life and with all the new research, we had so much hope. Now, with C-dif, they will always have to deal with it even if they get over it. If you have C-Diff, get checked often and remember, you can pass it on to those you love. Stool tests do not always mean you do not have it. If you still have problems, get a scope done. Sounds extreme but not once you have lived with it. My gut is torn up as well as my sons. We have pain all the time. All we can do is pray and so many doctors suck! We are 38th occording to the world health organization and it isn’t just Health Reform that needs to change but doctors need to be held responsible and health care givers, need to be careful.

  • lynn huntsman -

    I am trying to find out if it makes sense to take both Culturelle AND Saccharomyces boulardii after having a bout with cdiff in the hospital 11 days…I’ve taken Culturelle since and it’s been 11 months and I just ran across Saccharomyces boulardii and wonder if I should add it…it’s expensive but…I want to stay well.

  • Michelle -

    Don’t know if you remember me but my mother was a dialysis patient and very sick with this C-Diff. Well here is an update. She was DX was C-Diff sometime in July and never did get over it. even after round and round of antibiotics, pro biotics, seeing infectious disease Dr and Gastro Dr. Well 3 weeks ago she became very ill. we had to take her to hospital by ambulance. Turned out the C-Diff had distroyed her colon so bad it was about to rupture so they did Er surgery the next morning to remove all of her large and a foot of her small intestine and put her on a bag. They thought they got it but couldn’t say for sure. she seemed to do ok the first two days out of surgery then she took a turn. A week later she was barley with us and we had to make the decision to stop everything, the dialysis and IV nutruion, ect…long story short she went into hospice and passed away on 11/14 at 5:30am. I am happy for her that she is no longer suffering but we are all still having a hard time of it. Especially my father after 53 years of marriage. If you want anymore specific info just contact me via e-mail otherwise just wanted you to know. thanks for the help that you all did try to give us during this trying time and God bless you all in your journey with this awful illness.

  • Linda Cleveland -

    Thank you all for the info. I have had c-diff for 3 months. 3 treatment of Flagyl–no help–Vancomycin for 14 days–Well for 17 days–c-diff returns–new treatment with Vancomycin:
    125 mg. by mouth every 6 hours for week 1
    125 mg. by mouth every 12 hours for week 2
    125 mg. by mouthe every 24 hours for week 3
    125 mg. by mouth every other day for week 4
    125 mg. by mouth every 3 days for week 5 and 6
    My Dr.(Sherry Wright) is in Infectious Disease at Vanderbilt University. I am praying it works.

  • Teresa -

    I have a very long bad story with c diff. I was in and out of the hospital 20 times in 3 years, never was tested for c diff. Finally after my own research and the persistance from my family they finally did a stool sample. I have had it for 3 years and all the doctors in the hospital could not figure out why I was so sick. Stroked the final time in the hospital, I had been slowly dying of c diff for all those years. Almost had to do the poo transplant, after 3 sessions of very expensive pills, I am negative at this time. My guts from my stomach all the way down are all messed up now, have gastroperisis (paralysed guts). I want major attention brought to this little bug that can kill you, I want doctors to realize a simple poo test could have saved me so much anxiety, pain, and the slow death.
    Thanks for letting me vent a little!

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