Positive Again! Upcoming surgery been canceled.

[chillasboots]

It's been over a year since I've been on here, I've been battling this beast since my car accident in 2014 so yea a pretty long time, I've been on vanco for that long and a failed FMT. I was always messing with my meds like taking my leftover vanco when my stomach would hurt I'd stupidly take a dose and then go a week w/o my vanco....Yes I was being stupid with my medicine and finally a couple of months ago I saw my new GI dr after my original DR decided to abruptly retire and left me hanging but left me with months of vanco refills until I could see my new dr which wasn't until a couple of months ago, so you see that's why I was left on the vanco. Anyway when I went to see my dr I asked if I'd get more vanco or another FMT and they said w/o a positive test I wouldn't get anything. I panicked becuase I was afraid of relapsing again but I decided I was going to get through and continue to test if my symptoms changed. Well in May I was feeling up and down, weird BM's pain but not 3 days of WD so I thought I was having Post Infectious IBS...so my dr had me test even 6 days off from vanco but i knew it would come back negative, and it did. So my symptoms got better and then I started getting D again so I got tested again...negative...so this past weekend my stool was completely changed and I had a test kit just in case and this time I've been off Vanco for more than 3 weeks and today I got called that it was POSITIVE. I knew that might happen but I was hopeful that maybe this time I was cured and just having IBS. I was scheduled for knee surgery and had to let the surgery facility know that I had a positive c=diff and they canceled my appt. I was pissed...the receptionist argued with me that I need to be off antibiotics and cured until I get surgery but I know there are people out there that get surgery and get vanco or are on it? My Ortho dr knew my c-diff situation and told me if I needed to get vanco to take with the antibiotic Keflex for my surgery that would be fine, but the surgical place will not let me do it unless I'm cured?? I thought as long as you're on meds and not having D you should be fine?? My GI dr and I are thinking I start my vanco again and re-test and get a neg-test and show documentation that I am negative. Plus he doesn't want to do a FMT until after my surgery just incase my surgery goes wrong and I get an infection and then my FMT would be ruined. I get that it's precaution for the facility but I swear that receptionist didn't know what the heck she was talking about, listened to my situation and knows nothing about CDIFF...I'm so frustrated with this thing.

[beth22]

I would be frustrated too. I think your plan sounds like a good one. Get that negative test and have the surgery and take vanco. Then after you have recuperated from the surgery, you can think about the FMT. I found that the longer I took vanco, the worse my symptoms were and I automatically got relapses. The only other thing you could try would be Dificid as it kills less gut flora than vanco.

[Lisa33]

Sorry for your frustrations, and sorry you are still dealing with all of these issues. I am not a doctor, and this is just my opinion, but reading through this, I can't help but think that you have been on vanco for too long. Given that you were taking it willy nilly as you have admitted, maybe your body has built up a resistance to it. At this point, you need a negative test for the surgery, but if it were me, I think I would get in with an ID doctor and come up with another plan and discuss Dificid for treatment if you have an active infection. Although, I am not even sure if you have an active infection anymore. It seems like your test results are flip flopping. Your situation is very confusing to me. You make it sound like you are taking vanco just to take it, and it sounds like it may not even be doing anything. It could actually be making things worse. I may be misinterpreting what you are saying, but I'm confused. I'm sorry, I just think you have a confusing, frustrating situation and need a clear plan laid out with a good doctor that takes into consideration your c-diff history and your upcoming surgery.

Good luck and hope everything gets squared away.
Lisa

[chillasboots]

Well when my dr just decided to leave and left me without a plan I kinda treated myself probably not the smartest but i was given a new dr but wasn't going to see him until 7 months later! I had to do what I had to so that's what I did, plus the FMT i last did costed me $900 for my donors tests that were not being covered by their insurance and I wasnt working at the time so i couldn't foot the bill a second time. Now my dr's office does the FMT with their donors and I won't have to find my own donor and pay for the testing. It's just weird this time when it comes to my symptoms, when I stopped the vanco the first week, I had normal bm, but the day i sent in the test I was having mucus and it came back negative but I was only off Vanco 6 days so it was probably false. The second test I did I was off Vanco 13 days and it was negative, I continued to have normal bm, no WD at all I had some weird days but mostly I felt good. Then last saturday I started to feel weird and had loose and mucus bm and tested that and yesterday it was positive and that's being 3 weeks off Vanco, so I guess it's accurate? It's weird because I don't feel sick like i normally do with a relapse and it usually comes on very quick? I think I might wait to start the vanco and see how it goes, I do realize you can still test positive weeks after treatment cause of dead cdiff in your body and so I'm not testing to see if I'm cured I only test when my symptoms change. I really need my surgery and it sucks because of this positive test so I feel like I should just take the vanco especially if my symptoms change and also I'll get that negative test to get the surgery. I know people can still test positive and not have any symptoms and they are just colonized? There has to be a way to get my much needed surgery.