Will I ever get rid of C diff?

I also went through Vancomycin and then Difficid for c diff in conjunction with ulcerative colitis.

For probioticx, my GI recommended Florastor + suggested I try 4 oz kefir/day.

But +when meds failed both the GI I originally went to and the GI I now see since the 1st retired (both at Mayo Phoenix) were going to try FMT (fecal matter transplant) for recurrent c diff once I met Medicarre's criteria for coverage (having to do with tests establishing repetitive c diff. (But the issue became moot after I had a colectomy.)

I totally emphasize. It interferes and makes life totally miserable!

I just learned today that I am positive for C Diff for the second time. I had it in October and was sick for a month before I was finally picked up by EMT’s and taken to the hospital. While there I managed to get MRSA in my blood and pneumonia. I also had a bad UTI. I was in the hospital for 21 days and there were times I really thought I was going to die. I am allergic to Vanco so after a week of taking that they put me on Dificid. I went home mid November, tested negative 2 weeks later and now I’m back for more punishment. What is worse, (I’m fairly certain) is my doctor prescribed Clindamycin! From everything I’ve read Clindamycin has been known to CAUSE C Diff! Now we’re into the weekend, AND it’s New Year’s Eve and I’m honestly scared to wait until Monday to get the right prescription! Why would an Internist who knows I just got out of the hospital prescribe that? Sure, he’s human, but what if I hadn’t read what I had? There are a lot of people out there who just do as their doctors say without educating themselves! I know before I went in the hospital the last time he had me taking Clindamycin. Would that make the infection worse? Because by the time I called the paramedics I was very sick, but had been infected already for 30+ days. I believe I got the other infections while in the hospital because of the medication I was taking for rheumatoid arthritis, even though they immediately took me off of it. I didn’t know why they had done that at the time and honestly I don’t even remember the first week I was there. It felt like it just hit me out of left field and sinee my sister passed away after getting C Diff after knee replacement surgery (she had RA as well) I was terrified. They were running all sorts of tests on me, gave me a blood transfusion and a lot of other things I don’t even remember. I went from a size 9 to a size 4 in 3 weeks and I’m scared I’m going to end up back in the hopital! For now I’m just going to contact the doctor on call tomorrow and explain my situation and really hope for the best. My immune system is still weakened even though I’m still not on any medication for my rheumatoid arthritis which has begun rearing it’s ugly head as well. This all started with a revision reverse shoulder replacement surgery which is.another long story I won’t go into…but this is all just crazy! I want off this terrible ride and I’m hope hope hoping this will be my last fight with C Diff. My empathy goes out to all those who are suffering with this awful, insidious infection!

Thank you for sharing your journey. Was the colectomy due to the cdiff and did they remove all or part of the colon? How have you been doing with the colectomy? Have you had any complications? Wishing you good health in the new year.

I am so very sorry you are on this journey. Mine too seemed to be cleared up though not convinced it was as symptoms started within two weeks of being off meds but in that two weeks I was visiting a sister out of town that had major heart surgery using toilets at a hospital when it started to flare up. I was more worried about me giving it to someone and didn’t think about how susceptible I am so I now bring a baggy with hospital grade cdiff killing wipes with me and clean the toilet before I use it if I can’t wait until I get home but have an active infection so not going places. I hope you were able to get the right meds yesterday. Are you taking pre and probiotics with the cdiff antibiotics? Also add kefir to the daily diet. Do you see docs at Mayo currently, it’s a potential next step for me. You are doing a great job researching independently it seems that may be a long term need for those of us that are battling extended cdiff being very cautious on anything we take and ensuring all prescribers of medicine have awareness of our cdiff history as well as what we take over the counter and empowering ourselves with knowledge to advocate for best care. Another good person to talk to before starting meds or OTC’s is the pharmacist, they have in depth knowledge of meds and can help flag meds that would increase risk and work with the doctor/provider for alternatives. Praying things improve for you. I wouldn’t wish this journey on anyone.

When I asked one GI what I could do to prevent recurrence of c diff she said (1) practice good public handwriting hygiene and (2) stay out of the hospital. So true.

When I asked one GI what I could do to prevent recurrence of c diff she said (1) practice good public handwriting hygiene and (2) stay out of the hospital. So true.

I had severe ulcerative colitis.And had a couple of c diff recurrences while failing Humira, Entyvio and Stelara. Finally Rinvoq worked for me causing me to go from severe to mild with no recurrences (due in part to no need for antibiotics, which are a major trigger).

But then when they removed an area of high dysplasia in my colon, pathology showed a small area had converted to cancer. They thought they probably got it all, but I didn't want to take a chance.

A couple of years before I was thinking of doing a j-pouch, but elected a full procto-colectomy with end ileostomy instead. One consideration was that pouchitis is common, and that is treated with antibiotics. The probability of c diff after removal of the large colon is remote, but not 0.

They removed the colon together with the surrounding fat layer where lymph nodes are located. Testing over 70 lymph nodes + the colon was totally clear, So I have no regrets (other than I wish I could have found something like Rinvoq that worked for me years earlier).