Suffering and just found this site

[Magnus]

I was first diagnosed with C-diff almost 4 months ago and took Flagyl, and Florastor probiotics for 2 weeks. I actually continued the probiotics as I had read and heard that they are necessary. I read as much as I could on this in the meantime and learned that it frequently re-occurs, so I asked to be tested when the Dr.'s felt enough time had passed. I tested negative and was somewhat relieved, but since I was not feeling back to normal yet I really didn't trust that I was better.
A few weeks passed and I had the awful cramps/shooting pains and knew it was back. I tested positive again for C-diff and the Dr. wanted me to take more Flagyl. I questioned whether or not I should be on Vanco next and so the Dr. contacted the infectious disease specialist who agreed. I started 10 days of liquid vanco and on the 10th day I had horrible pain again. I contacted the infectious disease Dr. and they put me on another 10 days and set a follow up visit.
My follow up visit was good, I was feeling much better and would finish the vanco the next day. We talked about what could be tried next if I got the C-diff again, or if it had not actually been gone. I woke up the next morning with horrible shooting pains through my left side and very strong lower back pain. This was exactly the same way I felt when they put me on Vanco for 10 more days. I could not believe that I had just seen the Dr. and felt pretty good about things, and then woke up sick again. I contacted the Dr. and he called me personally which is amazing (I think). He didn't feel like I could be re-lapsing as I was actually finishing up the Vanco that day. We agreed to wait and see over the weekend and touch base again on Monday if I was still feeling sick. Well no surprise that I am still feeling sick. The pain is horrible and I'm back to no food sounding good, very tired, and depressed on top of it.
I know this is very long, honestly it is my first time ever joining a group like this and posting. I have been reading others issues and responses and find it so encouraging to know I am not alone with this. I welcome any comments and advice and thank you for having this site available.

[beth22]

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.

The majority of patients (about 70%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate, and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)

The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and “The FMT Foundation” under “Links” on the homepage.

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it can be.

Again, welcome. Remember, the odds are in your favor. (End of letter.)

Relapsing while on vanco is very rare unless you are on too low of a dose. We have had some posters who were on 125mg 4 x per day and needed to go up to 250mg instead. With liquid vanco, I'm not sure what they do. I thought it was stronger. It may be that it does not agree with your system. Vanco gave me looser stools. You mentioned that you were on probiotics. Probiotics give me cramping, gas and D unless I take very small amounts. Also, I became dairy intolerant with c diff. I got worse on vanco and my ID told me to stop yogurt and any dairy and within a day or two, things were much better. I definitely would follow up with your doctor though. Perhaps you have another pathogen as well and should be tested for it. Some have had parasites and others infections like e-coli, salmonella. I had campylobacter. I don't think vanco works for those. I would talk to your doctor and see what he/she says.

[roy]

When you say "sick" do you mean having to rush to the bathroom, or some other type of sickness?

[Magnus]

Thanks for the reply, it is so nice to know others are out there. I did contact my Dr. and he wants me to monitor for a few days as long as I can stay hydrated and then possibly test forC-diff again.
As far as saying I am sick again, I have severe pain throughout the abdomen and the D was absolutely awful again along with the constant bloating and gurgling going on.
I asked if I could have IBS and was told it could not be confirmed so soon after having C-diff.
Any thoughts or suggestions are very welcome!

[beth22]

If you are going to test again, ask the doctor to run tests for other things too - a stool culture and a test for ova and parasites. You might as well see if anything shows up. After c diff many of us seem to get other infections of the GI tract more easily.

[roy]

That sounds like a typical C.diff relapse and your Dr should be treating you on the symptoms and not waiting for a test result.
ALL the guidelines from the C.diff experts say that someone with symptoms like you describe should be treated and not to wait for tests.
I would be going back to the Dr or getting a new one!

Roy

[Magnus]

Thank you Roy and Beth, I plan to be in touch with him today as I don't really want to go out of town for Thanksgiving and get even worse. Just not worth it to me.
I so appreciate your advice and support!

[Magnus]

My Dr. is suggesting fidaxomicin next if I test positive again, does anyone have any comments on this drug versus others. I have had one course of Flagyl and two courses of vancomycin.

[pinkangel]

Dificid has helped several on this site kick Cdiff for good. I would do a search on the site to look for others experiences. It is certainly worth a shot. It seems to target cdiff bacteria and kills less of the good bacteria. I tried it and while it did not work for me the fecal transplant did. Another thing to try is a vanco taper or pulse if you do not try the Dificid. You still have quite a few options so hopefully one of these will work soon.

[Misscshell24]

I have taken Dificid. It has worked for several people on this site. I am currently on a vanco pulse while awaiting seeing a specialist about a FMT. Dificid is expensive. Luckily, my insurance authorized and covered it. There is an assistance program to help work with your health insurance on the cost, if need be. I spoke with them and they were very helpful. It did take a few days for my insurance to authorize it. If it is not readily available for you, maybe check with your doc about what's recommended for you and your symptoms in the mean time. Good luck and hope it does the trick for you.

[Magnus]

I have spent quite a bit of time reading through posts and information online about taking probiotics while treating C-diff and I am wondering how to decide for or against them. On one hand you need to restore healthy flora in your system, on the other hand it sounds like most people suffer great pains when taking them. I hadn't taken any for a couple of weeks and then found out I had a yeast infection so started them again. Within a day I was absolutely miserable with pain and cramping. At this point I am not sure if I currently have C-diff or not. I contacted my Dr. today and we are re-testing. I should know more tomorrow. How can you restore the healthy balance you need if the probiotics cause such pain?
Any comments or suggestions are welcome as always.
Thanks!

[beth22]

I had to try various brands of probiotics before I found one that did not bother me and I only take part of a capsule. You might want to do that or try kefir or yogurt. If you are talking about having a vaginal yeast infection, compounding pharmacies can make you up a cream that contains lactobacillus acidophilus.

[Magnus]

I do like Kefir and usually drink that, but that adds up in price too. As this looks to be a long term problem I just don't know what the right course of action is. Thanks for the suggestions, I will talk to my Dr. about the yeast infection idea.

[seekingcure]

You can also make your own kefir, if you like. The kefir "grains" can be ordered online. It's much less expensive than ready-made kefir because you can just use regular whole milk to make it. If you prefer, you can use organic or raw milk. The taste is quite different, though, and it is much more sour. It can be made palatable by adding pureed fruit and stevia.

[megan2]

I was just diagnosed 4days ago and I am 4 days on vanco. I am so weak and shakey. My stools do seem firmer. I however do not have a doctor who is treating me. The emergency room sent me on my way. I talked to my internist who seems to know nothing about c diff. Should I see a infectious desease dr or gastroenterologist. What type of drs do you all use. I also am not in the hospital and live alone. I am 54 . My mother is worried I should be in the hospital . Have others taken the meds while at home. thanks for you advice