Approaching 2 years!!! :)

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
Iceman19
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Approaching 2 years!!! :)

Postby Iceman19 » Mon Feb 17, 2014 11:33 am

I was diagnosed with C. Diff as a college junior almost 3 years ago. After initially thinking it was just something I'd eaten, the symptoms got worse over the coming weeks - diarrhea, abdominal cramps, fatigue, lack of appetite, bloody stool, and just an overall sickly feeling. I was preparing for my senior year of college, looking for a job, about to get married - it was the absolute worst possible timing. And I had already dealt with internal hemorrhoids just a year earlier, so I know there were problems with my digestive system. The doctors diagnosed me with C. Diff once I decided to see the doctor, almost 3 weeks after symptoms began. I didn't know what it was and had no idea the road ahead of me. I went through the 10 day course of flaggyl and seemed to have my symptoms clear up. After about a month and a half of being C. Diff free, my symptoms returned. Of course the doctors put me back through the requisite course of flaggyl again, only to have the symptoms return within 2 weeks this time. This treatment/recurrence of the infection continued for nearly 4 more months, with less time between relapse for each occurrence. After losing nearly 15 lbs, switching to vancomycin after the 1st month of recurrence, and feeling absolutely terrible, I decided to travel to the Mayo Clinic in Minnesota in desperation. I was willing to do anything - and I mean ANYTHING - to get rid of the C. Diff infection. Had the doctors told me to eat dirt to get rid of it, I would've wolfed down a bucket of dirt in no time flat. I was going all-in on whatever advice they gave. Blood transfusions, antibiotics, fecal transplant, etc. - all were discussed. To be honest, I wanted to go with fecal transplant first, after hearing about the 95% success rate for that procedure, but I agreed to try a unique combo of antibiotics first. I took a 4 week course of vancomycin, 4 times a day, followed by a 2 week course of rifaxamin (sp??). The first attempt failed upon relapse about 3 weeks after ceasing the medicine. With one last stab at using antibiotics, my specialist re-upped me on the same course. This was it, if the medicine failed, we were going all-in on an alternative treatment. I was incredibly nervous after stopping the antibiotics - a full 10 months after my first C. Diff diagnosis! When the rifaxamin was done, I played the ever-excruciating waiting game. 3 days - nothing, 1 week - feeling ok, 2 weeks - still good, 1 month - a new milestone. Once I got to 2 months, generally meaning C. Diff has been defeated, I was so happy I wanted to cry! We'd finally found the winning formula! Although I had irritable bowl like symptoms for nearly 1 year afterwards (and still sometimes do), I've been much better ever since. To this day, I still can't eat dairy or spicy too much without getting some cramps, but I am free of C. Diff!! It's been almost 2 years since I've had C. Diff and I'm here to say it was the toughest time of my life. I hope I never have to deal with it again, and I wish nobody would ever have to go through it. For everyone struggling with it right now - keep fighting!! Don't give in, and don't let it take over! The physical pain is horrible, but the mental battle is just as difficult. Win the mental battle and you will win the war! You will get through this. There will be many times where you wonder how you'll get past it, but you will! I remember forgetting what it was like to be 'normal' many times during my fight. It is an absolute fight, I won't sugarcoat it, but C. Diff is beatable! A few tips - find great doctors, now matter how far you have to go to get it; follow doctor's orders exactly as they tell you; eat healthy and get plenty of rest, thank God for every day He gives you and remember there are always people in worse situations; and NEVER GIVE UP!! Refuse to let this horrific illness defeat you!! Fight it as hard as it fights you and refuse to back down!! You will be better soon! God bless all of you in your battle!

seekingcure
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Joined: Mon Mar 25, 2013 1:28 am

Re: Approaching 2 years!!! :)

Postby seekingcure » Mon Feb 17, 2014 2:53 pm

Thank you so much for coming on and sharing your story and good advice. I am so glad you and your doctors finally were able to beat the beast. Your positive attitude and fighting spirit will be invaluable assets as you go through life! Good luck and I hope you never encounter c-diff again.
Bea

Bobbie
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Re: Approaching 2 years!!! :)

Postby Bobbie » Wed Feb 19, 2014 3:45 am

Congrats to you and thanks for posting your story to give encouragement to others.

jdd
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Joined: Fri Apr 11, 2014 7:43 pm

Re: Approaching 2 years!!! :)

Postby jdd » Fri Apr 11, 2014 8:20 pm

I just joined the discuss site and you are the first story I have read. I do need hope. I had it for a year but did not test positive until hospilalized and a great doctor worked with me. I have just been tested positive again although symptoms are not as severe and back on flagyl. I had changed my diet before I tested positive the first time due to my recurring IBS symptoms so I am used to eating right. Your post has given me the hope I was looking for. I am 74yrs old so at risk. So I feel for younger people who have their lives ahead of them and how disabling this can be.
Thank you so much for sharing your story.
ps what kind of dirt did you eat? I know you can't share that info so will ask my doctor, thanks again.
jdd

seekingcure
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Re: Approaching 2 years!!! :)

Postby seekingcure » Fri Apr 11, 2014 9:58 pm

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 80%) 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.)


Hi Jdd,
I just wanted to welcome you to the group that no one wants to join. I am so sorry to hear that you have relapsed. Many of us on site are older as well and many of us have beat c-diff (although many of us are left with IBS for a period of time) and you will beat it too. Sometimes it just takes longer than we would like. Most of us are also dealing with other health issues as well, so that seems to make c-diff doubly difficult to treat.

Do you tolerate the Flagyl well? Many of us had side effects from it and it is not as effective against c-diff as it once was. If you start having any side effects or feel like you are not improving with the c-diff symptoms, I would urge you to talk with your doctor about switching to Vanco. Ask for the liquid. It is much less expensive than the capsules. Another option is Dificid, but it is very expensive. However, they do have a program to provide it at no cost if you qualify. So, don't give up. You have many options left, including FMT if medication fails.

If you have any questions that you would like the group to comment on, start a new post in Questions about c-diff, where you will get the most responses. I hope you will be feeling better soon. Keep us posted on how you do and we're here to help in any way we can. Bea
Bea

Bobbie
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Joined: Sat Aug 06, 2005 8:00 pm

Re: Approaching 2 years!!! :)

Postby Bobbie » Sat Apr 12, 2014 12:25 am

Bea (seeking cure) gave you great info.

I, too, am "older" and had C. diff. several times but am still "alive and kicking. " You have a lot of options now we didn't have years ago - Dificid and the FMT. Please read the FMT forum.

Iceman didn't really eat dirt. Please reread his post.

With every good wish.

jdd
Brand New Poster
Posts: 3
Joined: Fri Apr 11, 2014 7:43 pm

Re: Approaching 2 years!!! :)

Postby jdd » Sat Apr 12, 2014 1:07 am

THANK YOU FOR YOUR RESPONSE TO MY POST I FEEL LESS ALONE WITH THIS CONDITION.
I AM JUST STARTING PARTICIPATING ON THIS SITE. MY DAUGHTER GOT A LOT OF SUPPORT WHEN I WAS IN THE HOSPITAL AND CLOROXED THE HOUSE BEFORE I
CAME HOME. WE HAD NEVER HEARD OF IT BEFORE AND I BELIEVE I GOT THIS FROM ANTIBIOTICS SO WON'T TAKE THEM AGAIN IF I CAN.
JDD

seekingcure
Long Time Contributor
Posts: 1907
Joined: Mon Mar 25, 2013 1:28 am

Re: Approaching 2 years!!! :)

Postby seekingcure » Sat Apr 12, 2014 1:17 am

I'm curious as to what antibiotic you feel caused your c-diff. I had taken several around the time I was diagnosed, but I believe that Clindamycin was the culprit. Bea
Bea

jdd
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Posts: 3
Joined: Fri Apr 11, 2014 7:43 pm

Re: Approaching 2 years!!! :)

Postby jdd » Sat Apr 12, 2014 1:34 am

I WAS HAVING BLADDER INFECTIONS AND WAS ON CYPRO FOR ABOUT 2 WEEKS THEN WHEN IN THE HOSPITAL THEY GAVE ME FLAGYL AND CIPROFLOXIN
OF COURSE IT DID NOT HELP.
JDD

Bobbie
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Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Approaching 2 years!!! :)

Postby Bobbie » Sat Apr 19, 2014 3:30 pm

Cipro is a big C. diff. offender. See CDI - Antibiotics. Macrobid is effective against E. coli infections which accounts for about 80% of UTI's. It is considered a "safe antibiotic" - unless you are allergic to it. I've taken it for years - 50 mg as a preventative. Always make sure you have the doc. take a culture to determine which bacteria is causing the infection.

Glad your daughter is C. diff. smart. Best wishes and hope you heal quickly. Drink lots of water - see CDI - UTI'S.


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