Can't find my way around.

[AnneKRH]

I'm not sure how to post. This is all I've got. If it's a complaint, it's not only that but much more. I came down with C-Diff several years ago, after 4 (or was it 5?) antibiotics in succession for a sinus infection. Online, when I should have seen my doctor. (That's a complaint.) Flagyl didn't help and I landed in the hospital. Vancomycin did clear it up, and I have not had positive tests since. But I am left with severe IBS and not much guidance as to what to eat, even if it is available in the community setting where I live. I've been to a GI specialist who just says IBS and no guidance to go with it.

I just want to know where to go to get started.

[seekingcure]

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.)


I feel your pain. I have had IBS for most of my life. I'm 62 now and started having IBS issues in my early 20's. My IBS has gotten worse since my nine-month bout of c-diff. Doctors don't give much guidance for IBS because apparently they don't really know how to actually treat it. The only thing I've ever been prescribed for IBS is intended to help with the symptoms, not actually get rid of the IBS. I've taken, and still take, them all---Imodium, Lomotil, Levsin and Bentyl. These medications do help to control the symptoms enough that I can function somewhat normally.

There has been some promising research recently with fecal transplants to treat IBS, but FMT's are currently only used to treat c-diff, as far as I know. Hopefully this option will be available some time soon. I'm one who would try it.

I'm not sure I understand your first sentence. Are you having trouble finding your way around the site? If you look under "Board index," all the different categories are listed there. The two most popular categories are "Questions about Clostridium Difficile" and "General C-diff Discussion." If you are looking for input to your questions, these are the two best places to post your topic. There are also several IBS support groups online that might interest you also.

If you have specific questions, let us know and someone will try to help.

[beth22]

I had very bad food intolerances after c diff and still have some. My doctor had me take Pepto Bismol with my meals for a while and then I tapered it down to just with lunch and dinner and finally just with dinner. I did not take a lot, but even the small amount helped me. Others have taken Questran if they are having loose stools. That is a prescription and it is binding to toxins and carries them out of your body. It is a cholesterol lowering medication, but since it tends to give constipation, it is prescribed for post c diff as well. Ask your doctor about it to see if it is something that might be right for you. If you have high cholesterol, it might be a good thing to use.

Probiotics help many. I can't take the normal dosages of them or I get terrible gas, cramping and loose stools or even D. I take a very small amount of VSL#3 (part of a capsule) and that seems to help me. Kefir helps many people as well and you can get that at any market. I also became lactose intolerant with c diff. If you are eating any dairy products, try to cut them out for a few days to see if that helps you at all. If your doctor is not helping you, I would seek a second opinion from someone that knows nutrition a little better. Some GIs do.

[justme]

I think doctors put the tag of IBS on any kind of intestinal complaint they can't explain. It's like a category they throw a diagnosis of "can't figure out what it is no matter what test I give him/her". It's been nearly two years since my episode of C. Diff and I still have pain in my colon nearly every day, no matter what I eat. I know it's still sensitive and because I am older and have other health issues, I may never fully heal and I've accepted that. However, most people do fully heal and when then have pain it is usually due to something they ate that their colon still has trouble digesting and we get IBS. Like Beth, I have a real problem with probiotics, but many people can tolerate them pretty well. I would suggest keeping a food diary to try and discover what it is that may be causing the IBS. It takes 24-48 hours for food to digest, so record what you've eaten and when. Then start eliminating food that you suspect may be causing the problem. The usual suspects are dairy, spicy food, and sweets. Sometimes, too much fiber in the form of wheat and vegetables may upset your system too. Good luck and keep us posted.
Anne