Tired of c-diff

[MissSophie]

New to this site, and wow what a lot of info. I have had c-diff for 13 months, been hospitalized 5 times. Currently taking Vanco have been on it since March, and was starting to taper off this week, when it hit again. The first time I got C-diff I became dehydrated within 4 hours, and passed out in the shower. I was hospitalized for two weeks because of organ failure. Four month later it hit again and instead of waiting four hours I went right to the ER & by the time I got there my heart was already acting up and my kidneys were working over time. I was admitted for another week. This happens three more times the last time was in March when it only took one hour to get dehydrated, but thankfully I was at my hematologists office & I got 1000 uts of saline in the infusion center. The next day I was admitted to the hospital still severely dehydrated, my potassium was so depleted they were running three bags at a time. I was in ICU for a week. I finally started feeling better after my GI did a colonoscopy flushing my colon using probiotics. I thought for sure when I went off the Vanco this time everything was going to be fine. But here I run to the bathroom more than 50 times a day, my stomach hurting, my body itching..My doctor upped my Vanco back to the 250 four a day but if I can't keep liquids down I will be admitted again today...I am soooooo tired of all of this.

After each bathroom episode I spray down my toilet with diluted bleach I also spray the door knobs, faucets and handle. My clothing are washed separate from everyone else, on hot. I have a sheet covering my chair in the living room, because I am not going to lay in bed all day. Anything I touch from my computer to tv remote is all wiped down with a microfiber cloth with diluted bleach, then I throw the cloth away. No one else in my family has gotten this and I am very thankful. Yea bleach.. Oh and I don't cook while I have c-diff...

Thanks for listening to me vent..

[seekingcure]

You have certainly had a rough time of it. I'm so sorry you are still suffering. You would definitely be a prime candidate for a FMT, in my opinion. Have you considered that option? I know it sounds yucky, but I, personally, am willing to do what it takes to get well. If you're open to this option, there's lot of information on site about doctors who will perform it. There's also another drug, Dificid, that some folks on here have had success with, when Vanco did not work for them, but it's very expensive. Have you consulted a GI or infectious disease doctor? You really need someone that specializes in c-diff.

I'll pray for you that the Vanco kicks in and you don't have to be hospitalized again. Please consider looking into other treatment options. Google fecal transplant and you will find a lot of articles about it. Keep us posted on how you do.

[beth22]

I kept relapsing too and even did vanco followed by a Xifaxan chaser and it still came back. The only thing that helped me to stay off meds was the stool transfer. I would speak to your doctor about it. Some people have done enemas at home themselves and have had success. Dificid is another option. There was a poster who had something like 14 or 17 relapses and the Dificid helped him. You can check if your insurance covers it. Wishing you the best.

[Bobbie]

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. (END)

I know you've already been through so much that much of this won't help you, but you might pick up a few tips. Best to you and keep venting. We "long timers" all feel the same way - sick and tired. Enough is enough! Unfortunately, we have to hang in there until we find something that helps. For some it is Vanco. (check out pulsing Vanco. in CDI - it has worked for several on this site) or Dificid or the FMT. Something will eventually help but the waiting is a killer. Sounds as tho. you are doing everything right with the cleaning. I have ruined so many beautiful towels with bleach.

[MissSophie]

I see a GI & infectious disease dr and my hematologist. I was actually scheduled for the FMT the beginning of June, but the hospital where they do it will only allow a spouse to donate, and my hubby had Valley Fever not to long ago so they will not allow him to donate. We asked to have my daughter or son donate, but they would not budge. That is why my GI tried the probiotic solution. I am not sure how much more of this my kidneys can take. They are already not doing well, and every time I have a flare up of c-diff they get just a little worse. Stage 2 kidney disease. At least with upping my Vanco & taking a handfull of probiotics I have been able to keep almost 2 cups of water in...Will talk to my reg GI tomorrow instead of dr on call....