new here - need to vent

[nzsc]

Hello Everyone, I am new here and have had c diff since June 29th, 2013. Yes, I can pinpoint the exact date/time. I was in the hospital for eight days, which stopped the bleeding, but not c diff. I am on my fourth round of drugs. In hosp. I had a cocktail of drugs including predisone, flagyl, then vanco. The drugs helped (no more bleeding and less bm per day) but did not stop c diff. I went to a different doc for a second opinion out of state, and took dificid for 12 days. Now, I am on vanco again for six weeks of a tapering dosage.

Will this ever end? Am I doomed to remain in my house on the toilet? I was starting to feel better, but then it was my dh b-day. I made the mistake of eating a piece of b-day cake. Prior to that cake day, I have been very, very strict with diet, eating only "safe" foods for me. I have not been back to work since this all started.

I have an upper and lower colonospy scheduled next week. In addition to all of this, my bloodwork tested positive for celiac disease, and the upper scope will confirm this. I feel so out of it. No one I know seems to get it. They do not understand why I have not been back to work and why I cannot just take pepto or kopectate and be okay. My mother is elderly and not well, so I do not see her at all. I do not want to pass this to her with all of her aligments. I feel isolated and alone in this. I know I am not and I know many people have c diff, but it feels that way.

okay, I will stop complaining, thanks in advance for listening.

[BananaSlug]

Did you actually relapse on the Dificid, or that was your doc's protocol to chasing it with Vanco? I would think they'd try Dificid a second time if that was the case. Supposedly it does less damage to the good bacteria.

Have you had tests that confirm you still have cdiff? Or just by symptoms? It could possibly be the celiac disease this whole time as an after-effect of having cdiff... I have heard they're all very similar and hard to distinguish at times. Unless you are having bleeding and M, then I doubt that would be celiac.

I would make sure you got a test to confirm cdiff each time. Preferably PCR.

[getwellsoon]

STANDARD INTRODUCTION: Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Please Read before You Post” and “Guidelines for Posting to our Discussion Boards.” They will guide you in using the site and answer some frequent questions. Read Dr. Borody's article and topics in “CDI” – formerly” FAQ” – including “Hygiene” “Nutrition” and “Testing.”

The majority (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See “CDI – Antibiotics”). Some people tolerate them; some develop C. diff again. (See Dr. Borody's article). Don’t take medications for C. diff. unless you are tested. (See “CDI – Tests.”)

For further information see http://www.peggymemorial.org and several other support groups on FB. Do research on medical sites such as “Mayo Clinic” and “Web MD.”

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. The best protection (for you and others) is thorough hand washing and good hygiene.

Although we know how devastating C. diff. can be - physically, mentally, and financially - it is not a fund-raising site. We rarely ban posters unless they are verbally abusive, combative or insulting; use inappropriate language consistently; or attempt to sell something through the site and usually issue a warning first.
Again, welcome. Remember, the odds are in your favour.


I'm sorry you are having such a bad time. Hopefully the scope will sort things out for you. YOu don't state whether your relapses were confirmed by tests or if they could be from the celiac disease. Are you following the diet for that? Maybe that would help you feel better until you get the results from the scopes. I wish you good luck in sorting it out and getting the correct treatment. Carol

[gm37]

I am so sorry you are struggling with c-diff. We all understand. It is no fun. I battled it off and on for 4 years. I finally got better after taking Dificid. You will get better, too. It just takes so much time to heal and get your body back into working order.
Hopefully the tests will help you know what else is bothering you.
Hang in there.
Anne

[nzsc]

Thanks for the support and advise.

Yes, I had stool testing each time and it most definitely c diff. When my bloodwork came back positive for celiac disease, yes, I have been following a gluten-free diet. My bms do not have blood, but do have M. I am hoping that the scope will give me more info. The bloodwork alone indicates celiac disease, but the way to confirm it is through a small bowel biospy. I have an upper and lower colonospy scheduled this week Thursday.

I read a lot about fecal transplant and after I get the results of my scope testing, I plan to begin that process. It is a bit of a process for me b/c I have to go out of state for that treatment. DH would be my donor. It is hard for him to take a few consecutive days off of work, but it is what he will have to do.

Again, thanks for all the support.

[getwellsoon]

Since it is a confirmed relapse of CDiff I can only say that it does take a long time to recover the gut flora. I was on meds for over a year and finally took Dificid and it seems to have knocked it out. I still suffered with IBS and M Colitis symptoms for almost 2 yrs. now. It is a long process, esp. if you have a severe case like I did. I can only tell you that you will get better, it takes a long time and you will have setbacks. Watch what irritates the gut. You have found out htat cake is one thing not to eat, I couldn't eat it either. Cheese and dairy were no no's for me and a lot of other things. I really had to stick to meat and carbs mostly and I gained a lot of weight with this diet. I am just now able to start eating other foods so I am going to try to eat more salads and veggies to lose weight. Hang in there and hope everyday brings you more and more relief. Carol