Never Ending

[chick43]

Contracted c-diff about 18 months ago, after a one-night hospital stay.

It took me a while to even realize that something was really wrong, as I just thought it was a reaction to the antibiotics I was given prior to surgery. When I finally just could not stand the effects any longer I went t the doctor and they ran a test. They called m up and told me I had c-diff, like it was something very simple that would not be much of a problem.

So, I go to the doctor and first we tried an antibiotic that was affordable under my medicate plan. It had absolutely no effect. My only other option was a med that was very expensive (at least to me). My co-pay was nearly $200! I took that med and then they ran the test again and said I was cured. LOL (at least, if I was not still sick I would be laughing out loud!)

The main symptom can only be described as explosive diarrhea. I have been taking probiotics for a long time now. Just when I think they are having a good effect I develop something else (like right now I have an upper respiratory infection) and have to go back on antibiotics. And as soon as I begin the treatment for whatever current problem I have, the diarrhea comes back. Some days I am afraid to walk out of the house.

I am a 72 year-old woman, and the thought of having to deal with this problem for the rest of my life is somewhat frightening!

I understand there may be a really effective treatment that would totally restore the balance in my colon, but it sounds really disgusting!.

And, Medicare would probably not pay for it anyway!

[Lisa33]

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.)

Welcome to the site, but so very sorry you have been suffering with c-diff. The first line of treatment, which is the cheapest is Flagyl. If you relapse, the next course is usually vanco or dificid, which are both much more expensive. You can ask about liquid vanco, which is cheaper. Vanco and Dificid have higher cure rates. Dificid does not kill good gut bacteria, where vanco kills some, and flagyl kills a bit more. I don't remember the percentages. Definitely continue with the probiotics as they help to restore the good gut bacteria. FMTs have the highest cure rate and are done after several relapses. Many people take quite some time to recover and get back to "normal" after c-diff. Some have post-infectious IBS and some become lactose intolerant. Some also have vitamin deficiencies, especially Vitamin D and Vitamin B-12 and potassium. So, it's good to get a complete blood work-up and make sure that you aren't deficient in anything as that can create symptoms as well. Your body has been through a lot, including your immune system, which may be why you keep getting upper respiratory infections. However, you really should stay away from antibiotics at all costs, unless you are cultured for a positive bacteria. The majority of upper respiratory illnesses are actually viral and shouldn't be treated with antibiotics. After c-diff, it's really important to make certain that you have a bacterial infection vs viral before treating with antibiotics.

I am not sure what symptoms you are still experiencing. Is it frequent watery D or are you having bad days and good days, and the D is intermittent? Typical c-diff symptoms are frequent watery D with the urgency to go throughout the day, accompanied by nausea, fatigue, and just feeling unwell, sometimes fever, chills, cramping. If you are not having these symptoms, it may be IBS. In early recovery, I thought I was relapsing several times as IBS can present itself similarly. Many of us follow the 3 day rule for IBS as a gage to distinguish between the two. See 3 Day Rule under CDI Info under the Board Index. With IBS, I would usually go several times on the loose side to D, usually in the morning, but symptoms would improve within 3 days. With c-diff, you usually don't improve, but get worse and feel unwell.

You will be ok. Your body needs to heal. C-diff is a severe infection and the meds to treat it are very strong. Healing starts when you are off meds completely. My advice would be to concentrate on boosting up your immune system and digestive system. I did it through vitamins and supplements and through a healthy diet. I actually went gluten free in early recovery, which helped me significantly. And definitely make sure that you absolutely have a bacterial infection before taking any antibiotics, as the antibiotics are probably hindering your recovery. This is all my opinion, as I am not a doctor and can't give medical advice.

Anyway, welcome and hope you feel better soon. You will get through this. There are so many on here that are proof that you will get through it.
Lisa

[georgina]

Hi Chick43
If you are still taking antibiotics other then CDiff antibiotics then you might not be cured of CDiff.The first thing to do when you CDiff symptomes are starting is to stop the offender that caused CDiff.If you reallly need to take antibiotics for other conditions then they must be asociated with vanco to keep symptomes in check.Probiotics did nothing for me.I was taking probiotics when i first came down with CDiff.The only one that did anything it was Saccharomyces boulardii witch is a yeast,it helped bulk up the stool.
It is a really effective treatment that can cure CDiff (untill another broad spectrum antibiotic is taken) and that is the stool transplant.I had a nasogastric stool transplant two weeks ago.I don't really consider this disgusting but i think that when you are sick and really want to get better you get passed the disgust.Sometimes i feel like i could be able to even eat s..t just to get better.There are as well other treatemnts that have a high cure rate such as:Difficid or IVIG and hopefully in 2016 we'll have more.Hang in there!

[beth22]

Hi Chick43 - I have had the treatment that you describe as disgusting - FMT. I first had the nasogastric tube back in 2008 that did not work for me. I then had the colonoscopy transfer and my insurance paid for it because it gets billed out as a colonoscopy. The doctor did not charge extra to put in the solution. I assume that medicare covers a colonoscopy. Anyway, it did get rid of the c difficile, but I was left with terrible IBS and SIBO. All c diff tests were negative. HOWEVER, I took Cipro about 7 months later for another infection and relapsed with the c difficile, worse than ever. So, FMT is no guarantee that using future antibiotics would be beneficial.

If I were you, I would talk to your doctor about Dificid, as was mentioned already. If not, disgusting or not, I would find out about FMT. A friend of mine just told me that a woman in her 90s has been suffering from c diff for years and her doctor went to her house (wish I had that kind of doctor) and did an FMT enema for her and she is finally able to eat more than a bland diet and her D has stopped. For her it was like a miracle.

[Bobbie]

Hi, Chick,

I am 75 and after several bouts of c diff - extenuating circumstances - am still alive and kicking. Had an FMT but. It took awhile to work. Beth gave you good advice. You will be fine.