New to forum and C-diff

[polz23]

I see I am starting a longer than anticipated journey with my C-diff diagnosis... I became ill first week in Dec 2015 with pain in lower abdomen and after a month of tests, CT scan, ultrasound, the possibilities of a tumor, cyst and appendicitis, were ruled out and I was diagnosed with C-diff a month and a half after I felt problems. By the time I was diagnosed I was passing about 2 tablespoons of blood a day, along with bloody tissue. Unlike many here, I had not been in a hospital or been on antibiotics when I contacted C-diff and I am afraid I became infected from contact in a restroom on a plane or? ... SO not thrilled with that avenue of infection and am now paranoid to use facilities outside of home, despite my frequent hand washing habits.

First treatment was Metrodaziole. The side affects were awful - and I never want to take that drug again. I followed that treatment with 1-2 Florastor a day, and another strain of two Probiotics 10, three times a day, complacently thinking "I Got This".... I relapsed after the first week.

Second treatment was oral vanco. Side affects were minimal and my body tolerated it much better than the Metrodz... My pharmacist had made up more than my two week supply so I was able to taper from 4 doses a day to two, then one for about 5 days. But after two and a half weeks of vanco, I could tell my body was starting to feel the affects and it was time to give it a break. I followed that round of antibiotic with 2 2x a day of Florastor, and 2 2x's a day of probiotic 10. I also tried to eat one or two Dannon Activia yogurts a day. But I had a feeling I would have relapse issues because toward the end of the second week of Vanco, the pain in my lower right side was flaring up. This lasted for about 3 days and subsided, so when I finished the second week of vanco plus a few days of taper, I felt pretty good about no relapse.

A week and a half later, today, I believe I have relapsed again, despite my consistent diligence with increased probiotics and Florastor. I could feel it coming on - first the dull annoying pain in my lower right side, and after that, a couple days later, well, things just become different. My doctor has ordered another fecal test to confirm, but, as most of you know, you can just tell when C-diff rears its ugly head again. He also mentioned fecal transplant... Not sure if its better to keep treating with Vanco if the c-diff does not become resistant to it or if better to just go in with the big guns and do the FMT? I have to go the weekend before test results on Monday, and will continue the probi's and Florastor as a matter of caution.. Also, is there a specific diet or foods to eat or not eat that can help get rid of the c-diff? I know different foods and treatments vary person to person. So far, I fortunately have not had digestive issues and can eat most anything without stomach upset.

Thanks all...
S.

[NanciT]

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, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.
“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the 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, vancomycin, or Dificid. 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. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. 20l6 will be a year of many advances and HOPE.
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. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.
For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.
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. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.
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 is.
Again, welcome. Remember, the odds are in your favor. (End of letter.)

Hello polz,

The above is our standard letter for all new poster,

Sorry you are having difficulties but as you will read on the site, it is very common. Now you are post Vanco taper and re testing from what I have read. You may want to speak with your Doctor about Dificid. It has worked for many on this site including me, although I ended up with a long taper. The FMT is another option but many physicians will not bring that up until there are 3 relapses. Every GI is different so I would discuss both. As far as diet, check under CDI, we have alot of information on the site about diet. It's great you are not having too much issue with foods, many like myself take quite awhile to return to a normal diet.
Hope you feel better soon!
NanciT

[Bobbie]

Polz,

Another welcome to the site. As Nanci said, your case sounds typical. See CDI - viewtopic.php?f=4&t=135#p42285.

Keep us posted. Feel better.

[Dukiemom]

First, I hope that you are not having a relapse. Could it be possible that your pain is a reaction to the breadth of foods so soon? You say you can eat anything but the extended cdiff and pharmaceutical protocols have surely inflamed your intestinal track. If you Google cdiff and click on images it is shocking, gross, but also gave me a new respect for the trauma my body has undergone. I'm hoping that you may be having pre recovery pain and not cdiff. And if you are elapsing, Dificid seems to have worked for me (60 days out now) and many others on this board. Perhaps you dr would consider that prior to FMT. I still am eating carefully and only introduce a new food once every three days to make sure that it isn't causing havoc. Can't patch or cast our intestines, but we can be kind. Praying for no relapse for you.

[polz23]

Update:
I did a second relapse, and my doctor fought with my insurance carrier for two days for difficid. I am now nearly 90 days C-diff free.
Upon finishing the difficid, I went on a very strict diet of Dannon yogurt, Chicken Caeser salad, white rice with chicken and grilled vegees - asparagus, carrots and zucchini, fruit smoothies, vegetable juicing.. I have stayed away from most dairy, sugars and bread.

I have been feeling much better, and along with that comes the temptation to break away from the strict diet and have some Pizza!!! But with such a lean diet, I have found I can no longer tolerate foods that are rich or sugary. I also notice I have sometimes have pain in my lower right side where the C-diff wreaked it's havoc, and have a question.

Does the intestinal area infected with C-diff regrow tissue or is the damage that is done, permanent? And it appears the GI does become sensitive to certain foods.

Dukiemom mentioned post-recovery pain and I wonder how long post C-diff that can or will occur? Or if it is permanent? And now I realize that when I feel pain in the previously infected area, that it might just be a flare up due to something I have recently eaten, and not necessarily a relapse? ..

Thank you,
S.

[NanciT]

Hi

Great to her back that Dificid worked for you and you are now CDIFF free!! I also had several relapses and was on DIficid for a 3 month taper. My recovery has been slow, many develop Post IBS which can take some time. Others have no issues Post CDIFF. It's taken me awhile, and I wonder if in my case it was the long taper of Dificid.
I still have some pain on and off on my left side...where it has been throughout. I am 1 1/2 yrs out and my GI feels it will just take time. I have had to go on antibiotics 3 times with Vanco so I also feel that is extending my recovery.
I have brought new foods in slowly and often notice when I have something new.....I get a bit of pain.
I continue to take VSL#3 which also can be a treatment for IBS. For me, the change in diet is related to how I feel but slowly I notice it less and less.
Give it some time, this will be all behind you
Happy you are doing well and CDIFF free!!
NanciT