C-Diff positive

Jen, I would consider getting a second opinion from another GI doctor. I live in Maine, and for 6 weeks my story was pretty identical to yours in terms of not responding to antibiotics, and it wasn't until I traveled to Mass General Hospital that I started receiving a huge change in care (Translation - I had a world-class team of doctors who were leaders in their field in IBD and C diff, and not a general GI doc from rural Maine. My time in Maine was a lot of watching and waiting and wasting away, and my time in Massachusetts was more about doing stuff now and getting things done.). Mass General is 4 hours from my home, but after experiencing the huge improvement in care, I would make the drive every day if I had to. That's not even to say your GI doc is a bad doctor. It means that you are a "complicated" patient by having both IBD and C diff together. If you research scientific articles on this, pretty much all of them come to the conclusion that they really don't know the best approach to treating C diff in someone with IBD, because as we all know, it's not always as easy as just taking a round of antibiotics. I was told by my hospitalist that there was an email forum about me between 20+ GI and infectious disease doctors from Mass General, many of whom are considered the leaders in IBD, C diff etc., and even with them collaborating on me, they had trouble coming up with a good plan. In a sense, I was an experimental patient for them, and that's kind of what all of us in this forum are, which is why it's great that we can all share what worked (or what didn't) for us. So definitely consider at least another opinion, because the longer this goes untreated, the more you risk getting worse, and it can go downhill quick as your body weakens and loses the ability to fight back. I know you're not an inpatient, but hopefully you live in an area where you would have a shorter drive to someone who specializes more in IBD / C diff versus just GI. Infectious disease doctors manage C diff as well and do fecal transplants, so that's another option to consider. I'm really sorry you're still going through this, and I hope you find something that works soon (I would definitely push the fecal transplant myself, particularly since antibiotics haven't touched it at all. Like you said, they should have done SOMETHING by now! Plus, I'm a little biased because it worked so well for me). I also agree that trying Dificid (fidaxomicin) is worth trying, assuming your insurance covers it. It didn't work for me, but it might for you. Good luck, and keep us posted!

Post Edited (swhitty) : 11/5/2019 5:06:59 AM (GMT-7)

My doc IS a specialist in UC at UCSF which is one of the best hospitals out here. I am not in rural anywhere. I am in the Bay Area!! I am so pissed off. I tried to get into the UC specialist at Stanford and they didn’t even return my call.

I just Googled high-dose vanco. because I did not remember reading about that a few years back when I had it. Looks like there are some studies about it. I think Dificid would be the typical next step though if this round doesn't work. It's expensive though. Were you cleaning extremely thoroughly with bleach (nothing else will work; you must use bleach). C diff. can live on surfaces for 6 months, yes, MONTHS. So it's very easy to get it again if you don't clean everything immaculately and wash your hands all the time. I don't think your doctor sounds horrible just because she's having you try a second round of vanco., for what it's worth.

I don't think my doc is "horrible", but I have been sick since August 18th and I feel like I will never be well again. I just sent her a few article links to the 500mg working. I am definitely better than I was(I couldn't even get out of bed some days), but still have fatigue, pain in my gut(different then UC urgency pain), blood, and sludge/mucous, mostly in the morning. I don't have a lot of urgency. I think the worst part is just feeling really really run down. I feel like something is in me. I wasn't super diligent early on with the bleach but have been lately. I also washed all my bedding using bleach. Do you think I got better and caught it again? It is possible...ugh!! I am going to go scrub again.

I think once the C-Diff is completely gone and you are in remission, you don’t have to worry about cleaning like that again as the last remnants of C-Diff would of been killed off by the bleach anyway. Me personally I didn’t go over the top. Drive yourself mad with worry otherwise, not a good thing to be stressed worrying wether you are not cleaning enough. I made sure I washed my hands a bit more regularly with the usual anti bacteria hand wash. I cleaned the bathroom slightly more often than normal, using bleach on the ceramic surfaces and wiping it down. I used a separate hand towel to my partner. I washed our clothes on high heat. You don’t need to wash your clothes in bleach. As long as you wash clothes on highest setting in washing machine, this will be fine. I’m well now for over 2 weeks and didn’t go OTT with any cleaning.

How long were you feeling better before you got sick again? If you felt better for a period of time, than yeah, it sounds like you got re-infected, but I guess it's hard to say for 100% sure. No, I did not spray down my toilet all the time. That's not necessary if you're washing your hands really well after going to the bathroom. When I got home from the hospital is when I cleaned as much as a could -- everything from the steering wheel and seatbelt in my car to light switches and doorknobs throughout my house, the toilet flush handle, sink handles, etc. And i made sure to wash my hands before I ate anything.

I don't remember if I took high-dose vanco., personally. I was started on a liquid vanco. while in the hospital and then switched to pills after a day or two at home. I don't remember the dosages. I was on a lot of antibiotics for campylobacter. At least she's letting you try it. I'd say that's a pretty decent doctor to give you something just because you asked for it. I like when doctors give me what I ask for, lol. That is crappy no one told you the importance of cleaning though.

It definitely sucks being sick so long. I haven't had a long, solid remission since the beginning of 2018, and have been on prednisone most of that time.

Here are some other good c diff.-hygiene tips: https://cdifffoundation.org/cdiff-infection-homecare/

Yep, hospitals are a c diff. cesspool. I am extremely paranoid every time I go to the hospital for bloodwork or infusions now. I open doors with my elbows or sleeves, I wash my hands right after leaving and I try not to touch my hands to my face much. I got c diff. after being on antibiotics for a long time and shortly after a hospital stay. Most hospitals could significantly cut down on c diff. infections by following better practices, according to what I've read. Lots of people die every year from c diff. contracted in hospitals. It's scary stuff.

Could be a flare underneath to. I knew I got rid of my C-Diff as once I come off the Vanco, I was still feeling relatively good. But I could tell I had a very minor UC flare that was lingering about. I went straight on the Pred enemas nightly and after about a week, I started to slowly get into full remission. I am now C-Diff and flare free thank god. I’m still using the enemas though to be on safe side and will continue to use them for next month, then I’ll slowly ease off them when I have maintained remission for a month or so. Get well soon, it will get better for you

That sounds like a good plan. Best of luck to you for getting well again soon.

I had a c-scope on October 3rd. My GI had me do it early(I was due in Dec) when I wasn't getting better for weeks and weeks. I finally got my stool test results back on October 7th and found the c-diff. The c-scope didn't show any signs of flare at that time, but perhaps it has kicked off since. I am actually starting to feel a little better! No idea if it is the 500mg or the increased Lialda, but I will take it. Hoping by this weekend the fatigue will be gone.

Speaking of....how did you guys work with this crazy disease? I have never been so sick and if it wasn't for the most amazing boss I have ever had I would have most definitely had to go on extended sick leave. He just basically let me work very little which was crazy. I would have never been able to do this in the past but I had just switched roles so it wasn't as critical for me to do my tasks. What did everyone else do?

I had to take time off of work as well. I had to use all of my sick/vacation time, and I am lucky that I qualified for short term disability to help pay the bills. My work has been amazing and has also given me a medical leave of absence until I am sure I am healthy enough to return. Although I can work through my ulcerative colitis flares, there was no way I could have done it with the C diff on top of it (and being in the hospital of course didn't help). Either way though, stress worsens my ulcerative colitis, and work can be very stressful so I'm trying to focus more on healing myself first instead of trying to rush back to work.

Jen ... if you are feeling better so quickly after the higher dose of vanco & increasing lialda I vote for the vanco as what is making you better. I doubt that a high dose of lialda would work so quickly. How much lialda are you now taking? Max dosage is 4800 mg/day and you can be on that long term. I haven't heard of anyone taking a higher dosage than that.