Lori has had C-difficile since December, and 9 separate rounds of antibiotics have not been able to do the trick.
Lori’s C-Diff Story:
C-diff has changed my life so much, I can’t go to work because I work with people.
I’ve lost 30 pounds, I have no appetite and I’m scared to leave the house because I might go to the bathroom in my pants. My son and husband don’t really understand it but they’ve been helpful. My son has been to the hospital with me six times due to the pain and due to the lack that I can’t stop going to the bathroom. He has been sitting there with me for hours. My husband…well I don’t think he really knows what to do.
I’ve seen two specialist, one that offered me fecal transplants but she didn’t know how to do it so she sent me to somebody else. Finally they did the fecal transplants, but they did not stop the c-diff.
I’ve been on nine rounds of antibiotics, every antibiotic that they use for C diff and after three days of taking the antibiotics I’m right back to where I started from.
My question would be if anybody has had the fecal transplants and did they work and how many times have they had to have it done.
I’m scared and frightened, not sure if I will lose my bowel over this. I’m 47 years old. Was on antibiotics, they’re not sure how I contacted this but all I know this life is been hell.
How do people get through this? How do you live a normal life and I sit here and I Google search for answers and questions because I have no one to talk to.
I don’t even think my doctor knows what to do, it’s hard.
It’s hard on families, it’s hard on you, it’s hard on your family, hard on your income, and my husband can’t support me and my son and they won’t let me go back to work. I wouldn’t wish this on anybody. How do people get through this? I’m depressed, I feel isolated I feel lonely, I feel lost, and I don’t know where to turn. You know you can talk to your family but they don’t understand what you’re going through. The doctor said well we can try the fecal transplant again or wean you off the antibiotics slowly. Well the antibiotics haven’t helped so I’m lost any information you can give me I would be glad for the help.
written by Lori P
submitted in the colitis venting area
I like to read swim and watch my son play baseball I I’m from Canada
Dear Lori,
Thank you for sharing your story, and I hope you are somehow finding a way to get some relaxation this weekend.
C-diff for sure is awful, and the symptoms can be even worse than some of the nastiest UC symptoms.
Please realize that there is lots and lots of literature out there that you can read which talks about c-diff and fecal transplants.
There has been quite a bit of talk about fecal transplants & C-diff on the website over the past few years, but there is also an increasing amount of studies out there on this exact topic. Here are a few which would be great if you could read:
1) Gastrointestinal dysbiosis and the use of fecal microbial transplantation in Clostridium difficile infection. http://www.ncbi.nlm.nih.gov/pubmed/26600975
2) Initial experience with fecal microbiota transplantation in Clostridium difficile infection – transplant protocol and preliminary results. http://www.ncbi.nlm.nih.gov/pubmed/26140631
3) Fecal Microbiota Transplantation for Clostridium Difficile Infection: A Systematic Review of the Evidence. http://www.ncbi.nlm.nih.gov/pubmed/26042318
As for an interesting page on the website that was actually an interview I conducted with 2 separate doctors, there is quite a bit of mention of fecal transplants and C-diff which you can as well read here:
https://ihaveuc.com/fecal-microbiota-transplant-questions-and-answers/
I wish you the very best, and hope to hear from you soon with an update that you are doing well again Lori:)
Adam
Thank you Adam for the research I still have the C diff still struggling still praying still fighting now I am at 13 rounds of antibiotics two faecal transplant’s and my leg and arm no go numb they’re not sure if it’s a side effect from the faecal transplant trying to figure that one out but I do appreciate all the information that you did send me that I hope everybody on your side has recovered and they feel better
Hi Lori, sounds like you’ve been through hell. Have you heard of/considered the Jini’s wild oregano essential oil protocol? Google it and read thoroughly. I would say it’s worth a try. All the very best healing wishes to you, Lisa
I wrote what happened to me on Adam’s c. diff site.
A few decades ago, I had it for 5 months. It was horrible. Several rounds of antibiotics by themselves did not stop it. Within a few days it would be back. The 5th g.i. doctor I went to solved mine. As she explained it, the unreached, unhatched bacteria would hatch after each of the antibiotic rounds was completed. She put me on simple Flagyl (2 wks) with a hefty dose of probiotics available at the time: plain, organic, nonfat yogurt 3 cups a day for months. (There are more potent probiotics available in several forms now.) Does your doctor know which ones will help you? Does he/she prescribe specific, powerful probiotics to you? As recently as last year, the g.i. doctor where I lived at the time knew much less than I did about which probiotics help specific issues. I still eat yogurt and other probiotic foods daily. I wish you the best and sympathize with you. Awful. Awful stuff.
I haven’t even seen a G.I. doctor here they’ve never put me on probiotics I’m on my 13th round of antibiotics to faecal transplant’s and on my leg and arm keeps going numb after I’ve had the faecal transplant the doctors can’t figure out why I hope you got rid of this disease I wouldn’t wish this on anybody are you now free of the C diff I’m hoping one day soon I will be in after you were cured did you have any side effects
I started to feel better in 5 days and started getting better immediately after 5 months of total hell, continuous rounds of antibiotics, and feelings of hopelessness. I remember feeling so much better on the 5th day after I had completed that very last round of Flagyl with the newly prescribed probiotic yogurt regimen. I am amazed that your doctor has not had you on massive probiotics or supplements. That wonderful 5th g.i. doctor that I saw said that I needed to eat enough yogurt to bombard the gut with enough good bacteria so that enough of it would make it into my gut to actively combat the bad bacteria. There are many very, very good and appropriate probiotics in various amounts. I would have expected that, at this point in time, would know that whenever one takes an antibiotic, a probiotic is also necessary—especially to prevent c. diff. Antibiotics kill the good bacteria along with the bad. There are a few protocols for taking an antibiotic with a probiotic. Talk with your pharmacist. People do not take them together or one will cancel out the other. An hour before or two hours after the antibiotic. Also, from what I’ve been reading lately, it’s good to take heavy probiotic on an empty stomach at bedtime.
Different probiotics do different things. With such awful diarrhea, check out s.boulardii, biffidus, l. acidophilus, and Culturelle (lactobacillus gg) in the articles below—and others if necessary. (A good friend of mine had c. diff a few years ago and drank Kombacha, another form of probiotic, in addition to the probiotic capsules her doctor prescribed.) I hope that you can start advocating for yourself or have a good friend to help you get the help you need. Also, I hope you can talk with a knowledgeable nutritionist who can help you learn what you might be able tolerate without aggravating your stressed out, cramping gut. The following are only a few of many web resources that address c. diff:
http://www.livestrong.com/article/322714-which-probiotics-are-good-to-take-with-a-c-diff-infection/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105609/
Per a comment below, paleo with a few selective grains is the way I live with my UC now. I hope you get GREAT help going forward in your healing process.
Lori,
I had a fecal transplant in a medical study here in
OZ. I Got ten months remission from it.
Thank you jay I have had too of them and still nothing it’s been A long struggle and now my arm and leg keeps going numb aftet had the faecal transplant and they can’t figure that out either
Email me if you want more info. Jay. If i was you id be booking in immediately you have nothing to loose.
I had C diff too 2x I stayed in the hospital for a week because I have that infection,I took vancomycin and antibiotic when the c diff gone I started my remicade infusion after I had that treatment for 2 times my c diff came back so I stayed in the hospital again for about a week they treat my infection and when I dis jay I took vancomycin for 4 weeks then I started my humira injection.BTW I asked my GI Doctor why the c diff came back then he said probably because of the remicade infusion it’s too high risk for infection he said so I switch to humira..right now I am recovering but still I feel a little pain in my abdomen,I was diagnosed with severe ulcerative colitis 3 months ago.
I haven’t even seen a G.I. doctor here they’ve never put me on probiotics i’ve had to faecal transplant’s and I’m now on my 13th round of antibiotics I hope you are covered and wish you all the best luck
Vancomycin with a 6 week taper finally got rid of my c-dif. I also take a probiotic and eat yogurt daily. Good luck!
I was 67 when c-diff struck. I had been taking 2 antibiotics, one for a sinus infection and one for a tooth infection. WHAM ! I was hospitalized immediately and had 2 fecal transplants which did not work. My Infectious Disease doc started me on Vancomycin. I was hospitalized for 2 months, the entire time sitting on a portable toilet, sleeping (RARELY), with my head on a pillow resting on my bed. It was not the worst thing I have been through (I am a 30 year survivor of Transverse Myelitis), but it was still horrible ! I took massive amounts of Vancomycin and after a year I tested negative for the C-diff. I’m now 69 and continue to worry about having to take ANY antibiotic again ! The Vancomycin had to be compounded by a local pharmacy and my insurer, Humana, would not pay for it and it is EXPENSIVE ! Keep fighting and they will come through with a stop cure. I was scheduled, abdomen marked, and in the surgery room when the surgeon and I got into an very bad argument and he refused to remove my colon. THE LUCKIEST DAY OF MY LIFE ! Carry on and know that this infection CAN be stopped.
Dear Lori,
I am currently 16 years old and I have been battling UC since I was 13. The main reason it was so hard for me to control my disease was because of the multiple c diff infections. I have almost had more than 20 c diff infections throughout the years I have had UC and it was one of the hardest things to go through especially while I was in high school. I had to drop out of school and become home-schooled so I could be around a bathroom when I needed one (which was pretty much every 20 mins) I went from 130 pounds to 90 pounds during these infections. I had three fecal transplants. The first fecal transplant worked tremendously, for about 3 months, until i got another infection. Them my doctor decided to try another one while I had an infection, well that was not strong enough to help. Finally I tried a third fecal transplant from a very healthy donor in my family. Unfortunately I was very sick at this point and was being hospitalized, so that transplant did not work either. Finally when I was on the very final decision of trying one more step or getting my whole colon removed, I decided to keep holding on a little longer. I started Entivio treatments (this was the 4th treatment I had tried). At first I did not see a very big result, but then I started doing the PALEO diet along with the treatment. My father had a friend that has the same disease I have and he said he tried the paleo diet and has been in remission for over two years. Since I have started the diet I have been in remission since February. I know that does not seem long, but considering the fact that I have been battling this for 3 years and my doctor told me I had one of the worse colons she has ever seen, it was a miracle. Since then I went from getting infections every week, to not having a single sign of c diff for MONTHS. I highly recommend you try this and I wish you the very best. Prayers go out to you and If you ever need someone to talk to I have been through it all so feel free to contact me individually if you want to discuss this more. Keep fighting.
Thank you for reaching out to me I hope everything is getting better for you and being so young you are a fighter You give me something to look forward to and hold on to wish you all the best
Hi Lori,
I just saw your story now. I truly hope you are doing much better by now, but if not… I have some advice.
I almost died of C Diff last year. It was awful beyond words, it lasted for months… I was down to 85 lbs (and I’m 5’7″) I understand what you’re going through. I’ve been there.
The first thing that you have to do, is see a GI!!! You need to see a specialist asap! If you can see a GI that specializes in C Diff patients, even better.
About your fecal transplants (FMTs), where they top-down or bottom-up? I know some places do FMTs with the NG tube through the nose and others do them bottom-up via colonoscopy. From everything that I’ve read, the colonoscopy method (bottom up) is SO much better, with a much higher success rate.
I’m guessing you have been put on Flagyl and Vancomycin and failed on both? Did you taper off the Vancomycin? If Vancomycin isn’t working for you, then you need to ask for Dificid. It’s another antibiotic that works really well for C Diff.
Are you taking Saccharomyces Boulardii probiotic? This probiotic: http://www.orthomolecularproducts.com/saccharomyces-boulardii/ literally saved my life before I got the FMT. I tried other (cheaper) brands and they did not work. This one allowed me to actually get off the toilet and stopped the constant diarrhea. Take it at least two hours before or after your antibiotics. I was taking 4 Saccharomyces Boulardii pills a day (2 twice a day) and oh my gosh, it helped so much!!! I buy them online at Professional Supplement Center. It’s a therapeutic-grade probiotic, so most places only sell it to doctors.
Go back for more FMTs!!! My C Diff did go away after 1 FMT, but I know that lots of people have to go back 3 or 4 times for it to work. My C Diff was gone, but I did NOT feel better right away. It took about 8 weeks before I even started feeling better, and then I had post-infectious IBS for MONTHS. C Diff has done an amazing amount of damage to your insides, so it will take time to heal.
I don’t know where in the country you are located or how desperate you are, but if you have exhausted all other options, go see Dr. Shepard of RDS Infusions in Tampa, Florida. He has saved the lives of thousands of people with C Diff. He’s a GI and he does FMTs.
I am sending you a great big hug!!! I would be happy to try to answer any questions you might have. Hang in there!