C Diff Is Ruining My Life

I got diagnosed with C diff June 16, 2016 my birthday.

I contracted the disease sometime in January or maybe November or December I was caring for my mom who lives in a nursing home that was disgusting and I obviously contracted it from her she passed away January 27 .

I was let go from my job in March because I was so sick I was not diagnosed until June and that is the reason why I was so thick my job did not care I’ve been unemployed I can’t work and pinnacle sick I’m on my second month of antibiotic’s and vancomycin and I know that I’m still sick I can tell by all the movement and get them I think I have any vixen I have an addiction notice and shut off notices were all my bills I cannot work and I’ve been denied Social Security or any government assistance. I have been the nicest cosmetologist it’s 1996. I have worked since I was 16 years old and never been unemployed.

I have a 13-year-old daughter that I am Single handily taking care of and a 21-year-old son in college i’m losing my mind here.

I didn’t know that I had C diff.  I was sent home three different occasions within a week from a Hoosier University medical hospital they kept telling me that I had a stomach virus I was in so much pain they had to give me morphine I was vomiting profusely I could not even keep water down. I was in so much pain I hadn’t eaten in seven days before I went to University Hospital main campus and they diagnosed me with the C diff infection.

My C diff Experience

I had my first infection November 2014 and thankfully it was pretty mild and easily treated with antibiotics. I felt healthy until May 2015 in which I noticed the gradual onset of the symptoms but didn’t think it would be back so soon. I was stupid and put off seeing my doctor until end of July when at that point I couldn’t get in for tests for another 6 weeks minimum. So, midway through my fall college semester I got so sick that I couldn’t eat, or even hold down water for that matter without vomiting. Thankfully my mom took me to the ER because I was extremely dehydrated, and it was there that we found out my C diff was back worse than ever. After 3 weeks of antibiotics I finally tested negative for the bacteria but it took a toll on my body that I would never have expected. I’m a 21 year old female and I consider myself to be in good health (minus this obviously) but it took me months to recover. I didn’t gain my full 3-4 meal a day appetite back for around three months so I was constantly feeling drained, no energy to hang out with friends or go to school. I ended up having to drop my classes and finish them in the spring of 2016. So I made a huge change to my diet and began taking probiotics which helped immensely. By this spring 2016 I was so excited because school was going well and I felt great! Until about a month ago when the diarrhea started up. I figured maybe because I was drinking a little more than usual which was why I was having loose stools but I began to wake up feeling hung over every morning even when I didn’t drink a sip of alcohol the night before!! Thankfully I made a doc appt because my tests came back positive for C diff again……the 3rd time in roughly two years 🙁

It just really sucks because C diff is not something that an outsider would see me as visibly sick and I wish I could explain to my friends why I don’t want to hang out sometimes. But really, who wants to tell their friends about their diarrhea problems, especially when boys don’t think girls are even capable of pooping….lol

Alcohol Reduces Good Bacteria in your Gut

Had c-diff.Was in and out of the hospital 4 times a week at a time. When discharges I was told I the blood test show I was free of c-diff only to start getting pain in the abdominal area lower and upper within a week or two and back in the hospital within a month sometimes. Once I was free of c-diff I completely stopped any alcohol drinking. Not even one and found out that I still have flair ups mostly moderate to sometimes mild but not severe and no c-diff with severe abdominal pain. Have stayed out of the hospital for 15 months so far. Eating to much and eating without spreading out the time between meals causes worse flairs for me. Thanks for what you do and hope this helps.

My C-Difficile Story

I unfortunately have had cdiff four times in the past year. It’s not too much fun. The first time I was diagnosed I thought I was just having a very bad uc flare. Well lucky for me I was dead wrong.

The pain is absolutely horrible. That and the fact you have to use the bathroom soo often. The doctors put me on flags the first time but that gave me even worse pain. Turned out that Flagyl gave me pancreatitis. I ended up in the hospital for four days due to that. I ended up taking vancomycin and probiotics which finally got rid of it.

I now take probiotics daily to prevent it. The money spent is well worth not having to bleach my toilette after every use and feeling horrible pain

Got C-diff In the Hospital

Got c difficile while I was hospitalized with U.C. I was dismissed from the hospital despite telling staff that I felt sick. After a 2 hour car ride home, where I threw up, had diarrhea, I ended up in our rural hospital ER. That is where I was diagnosed with c-diff by a simple stool sample. I became so quickly ill, that I was ambulanced back to the major medical center.

How I Got Past C-Diff

I was diagnosed with UC in July 2015 and went through a streak of flare ups, one week on lots of meds and no symptoms and the next less meds with more symptoms. Visit after visit to the doctor with a high tapered dosage of prednisone at one stage and regular doses of entocord to supplement my pentasa. I ended up in the hospital for 4 days having only liquids and an IV as sustenance. After this hospital trip I felt the best I had felt in weeks. But a week later the diarrhea was back and I felt the worse I have felt since. Stomach cramps and a strange new unpleasant smell made me worry. The doctor just upped the dosage of my pentasa and gave me more steroids with no results. Other symptoms I had were headaches, from the dehydration. and I felt very tired all the time regardless of how much I slept.

Finally my mom decided she did not like the doctor I was seeing and sent me on a long trip, 630km , to our old trusted doctor. He immediately told me to go for a stool sample before I would see him. I went. The results were positive for C-Diff and he prescribed something…I cannot remember the name and cannot find the prescription…but that does not matter as the medicine did not work. It only removed the symptoms while I was on the drug. But he also sent me to a gastroenterologist at the same time. The gastro redid the tests and found the C-Diff again. He put me on Vancomycin for 14 days and upped my pentasa dosage and I started going to a dietitian at the same time by his request. The vancomycin worked wonderfully it stopped the symptoms that day and two weeks after I had taken the last dose we did another test and the C-Diff was gone.

The dietitian told me to take the following: Calcium supplement (1200mg/day), Omega 3 (3200mg/day), a probiotic and a intestinal support tablet. I believe the combination of vancomycin and the probiotics did the trick. She also changed my diet so that I stay away from gassy and rough food. I eat fish 5 days of the week, where I used to eat red meat every night, and do my best to stay away from anything that can increase the chance of a flare up. I am certain that my C-Diff was caused by my hospital visit so I want to stay away from the hospital as much as possible. I avoid alcohol, chocolates and coffee. The three things I loved the most pre-UC. I do however drink decaf about 3 times a week.

After I was diagnosed I did some googling and found that C-Diff is a very contagious thing. I feared my girlfriend might get it from me so to prevent that from happening I started disinfecting the bathroom whenever I went. I cleaned the toilet and the sink with a dettol disinfectant every time I was in there even if it was just to pee. I also started to keep a disinfectant handwash in the kitchen and washed my hands before i did anything. It sounds a bit crazy, but I did not want to give C-Diff any chance of re-infecting me or infecting anyone else.

I have been symptom free since November 23 2015 and I feel great. Since I changed my diet according to the dietitian’s advice I have also been feeling better altogether. My advice is to always seek a second opinion if the symptoms recur and to seek that second opinion quickly. C-Diff is not a nice thing to have and if the doctor does not know you have it he can make it worse with the wrong drugs. Go see a dietitian, they sound like a waste of money and time, but their advice can really help you to prevent and manage flares so that the terrible C-Diff has no chance of returning. And stay clean. Scratching your bum every morning and then covering your mouth when you yawn could just be the reason you cannot get rid of your C-Diff.

As for the mental strain this disease gave me I had only one solution: God. Knowing that this world is one full of pain and suffering and that I am saved in Christ, and that through him I will one day taste a never ending life of peace, it encouraged me to not fall into any kind of depression. This world is only temporary. And the suffering we experience in it is just as temporary.

Worst Smell EVER

For starters the only way I was able to get rid of and or prevent C-Diff was by means of Flagyl and antibiotics. I had C-Diff 3 times and as you all know it is very unpleasant, yet alone the smell good lord that smell. The first incident was when I came back from my first trip to the hospital in regards to UC. My primary Doctor who specialized as a GI immediately had me take a sample which was not the best experience in life. One thing I would like to add is that after gathering my own stool sample which again as anybody who has or have C-Diff knows this is not a fun experience. My wife is a nurse who is studying to become a nurse practitioner, after the stool sample experience I now realize her motivation as well as her reasoning for wanting to keep going to school and become a practitioner. I should also add that I congratulate all nurses for it is not an easy field what so ever.

I was first treated for C-Diff with Flagyl which ended up working, not the greatest after effects but what it did to help was terrific. The second time it happened was after a trip to the ER due to having server pains. Again had to experience the joy of a stool sample. Again I was treated with Flagyl but was also given some antibiotics. If its’ one thing I learned while having anything related to UC is that antibiotics help out tremendously. The third time I had C-Diff was again after a trip to the hospital, had to visit the ER once again due to severe pains. After that 3rd time of C-Diff I started to become nervous during any visits to the hospital. I ended up being diagnosed with a severe case of UC which caused me to lose my colon. The whole time visiting the hospital I was scared to death of getting C-Diff again. Wasn’t the surgery, I was actually looking forward to that due to the pain, it was C-Diff that freaked me out the most for every time I gotten it was while I was in the hospital.

5 Horrible Months, 3 Bad G.I. Docs & 1 Terrific G.I. Doc

Years ago, It took me five months with four gastroenterologists —only the fourth knew what she was dealing with.

(I even talked by phone with a doctor at Johns Hopkins who worked on the drug protocol who told me that the antibiotic was the only way he knew to treat C-Diff.)

I got C-Diff from Augmentin I’d taken for a sinus infection. My gut went spastic.

Doctor said to take Immodium. All that did was to let C-diff develop. Got really sick.

First doctor Rx-ed Flagyl, that worked, but after 5 days after I had finished a two week course it came back. That happened several times. Starting doctor hopping.

Tried Vancomycin. That worked but it came back again.

By the fourth doctor I had figured out that it must be spores/eggs that hadn’t hatched when I was on an antibiotic. Unhatched, they were not affected. Doctor asked me if I was eating yogurt and wanted to know how much. I told her one cup in the morning. She asked what kind. When I told her, she said I should go back on simple Flagyl for another two-week course, but this time I needed to eat 3 cups a day (morning, midday, evening) of organic, non-fat, plain yogurt (such as Stonyfield) and that I needed to keep that up for at least a few more months. The concept was that our stomachs are designed to kill bacteria; thus we needed to bombard the gut so that some bacteria would get through to the gut. This time I got better!

Now, there are so many probiotics available in powdered packets or capsules, refrigerated or not, I’m not sure what the probiotic plan would be. I kept up the yogurt for ages as I didn’t dare take less that two per day for the next two years. (Incidentally, I have been told that having had the C-Diff set me up for helping pave the way to get ulcerative colitis more than a decade later.)

5 Times the Charm

Had C-diff and got better

I have UC and I got diagnosed with c diff in April of 2015 in the hospital. I had just started Humira and had my 2nd loading dose when my symptoms got worse. I was running to the bathroom up to 20x per day. There was some blood, some mucus but I had no other symptoms. It never crossed the mind of my GI that it could be c diff. He put me on 40mg of prednisone which of course didn’t help. I just got worse. I went into his office a few days later and he looked at me and immediately sent me for blood work and booked me in for a flexible sigmoidoscopy the next morning. He had fully intended to admit to hospital for IV steroids. But after the scope, he said that my colon actually wasn’t in bad shape and my blood work seemed ok. So he upped my prednisone to 60 mg and sent me home. By the end of the week I was admitted to hospital. As per hospital policy they test all patients with long term diarrhea for c diff. Everyone was surprised when it came back positive. I had 0 of the classic symptoms (except diarrhea of course). Was treated with 14 days of Flagyl. While on Flagyl I had 1 fully formed bowel movement per day. It was magical. But the side effects were simply awful. Worse drug ever. When done the Flagyl, diarrhea came back. Positive for c diff again. Put on a 10 day course of Vancomycin. Again, felt great while on the vanco. No side effects. Once I was done, symptoms came back and I tested positive for c diff a third time. So I was put on a 6 week taper of Vancomycin. Again, I felt great. And once again, once I was done, I still had c diff. So my GI stopped all my UC meds and put me on Dificid. That did it. C diff was gone. I was c diff free for 3 months and then started Entyvio. After loading dose #2, everything went downhill. Horrible cramps, diarrhea, no sleep, dehydration. I felt awful. Tested positive again for c diff. My GI referred me to another GI who did fecal transplants. Got my fecal transplant in Nov. 2015 and have been c diff free since then. But now, in January 2016, I am waiting for the results of a stool test to see if I have c diff again. Hoping not.

Because it seems I never present with the typical symptoms, I ask to be tested often just to be sure. My GI has never disagreed and indulges me. I always tell others that there’s no harm in asking to get tested. The symptoms can sometimes be so similar to UC symptoms. I have to say, I loved being on the antibiotics (not Flagyl) because I didn’t experience any c diff or UC symptoms. I’ve never felt so good in my life. So when I tested positive for c diff, I was always a little happy and relieved because it meant that the antibiotics would make me feel completely normal.

As for probiotics, I have yet to find one that helped with the c diff. Florastor is recommended but it never did anything for me. Neither did Align, VSL#3 or Bio-k Plus. But everyone is different and I know it has worked for others. C diff is horrible. My thoughts go out to anyone who has experienced it or is currently going through it.

submitted by Kim V