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)