Hi Newly Diagnosed,
I'm so sorry you're going through this. It is no fun at all, to say the least. Good for you for doing research, and it's totally understandable to feel a bit freaked out by all the dire info out there.
A few things... I'll say my recommendations before describing my own experience with C. diff and UC.
First, your doctor is right to consider C. diff, and it is definitely worth testing for. As someone else mentioned, if you do have it, then until the C. diff is under control, your colitis meds won't seem to be effective. Because of that, if you're having a bad flare and nothing's working, then it can feel "good" to test positive for C. diff--it explains what's going on!
That said, C. diff can be difficult to diagnose. Even if you have it, the tests don't always come back positive for it. In my own case, I had two false negatives (at least, I believe they were false) before I finally tested positive. (I was SO relieved to get that positive test result.) If you test negative but you and your doctor still think you may have it, it's worth testing again.
Because there is a chance you have it, you're also doing the right thing to consider cleanliness. It is indeed very contagious. If your husband or son have weakened GI tracts or immune systems, are on antibiotics, or if your husband is elderly or your son is very young, I think they're at higher risks of a C. diff infection. But if they are healthy, then being exposed to it isn't as likely to cause problems for them--many people carry C. diff in their guts, but it doesn't cause infection because the "good" bacteria keep it at bay. So assuming they are healthy, keep cleaning but don't worry too much.
Speaking of cleaning, if possible, I recommend educating your husband and son about
C. diff and enlisting their help as much as possible (of course, depending on your son's age). In general, whether this is C. diff or "just" (!) a bad flare, it's important for you to get as much rest as possible. If others can do the cleaning, and any other cooking, errands, etc., that will help you get better sooner.
Here is a pretty simple tip sheet about
C. diff that includes cleaning suggestions:
hamiltonhealthsciences.ca/documents/Patient%20Education/CDiffGoingHome-th.pdf You could have your husband read this with you. Bleach is key.
I respectfully disagree with the person who said C. diff is not worse than UC. In my experience, C. diff caused much more pain than UC, which does also cause me pain. UC gives me lots of cramping and some acute pain, which is quite difficult to live with during flares. But the C. diff pain was distinctive and more excruciating: a burning so severe that it left me writhing in pain and sometimes needing opiods (norco, morphine). Also, while UC is generally not life threatening, C. diff most definitely is, as you have read. But I think what makes it dangerous is that doctors don't always think to test for it, and you and your doctor are on top of things. So although the possibility of C. diff is to be taken seriously, you're going to be okay!
Lastly, I agree with the folks who urge you not to stress. It's totally valid to feel stressed, of course--this is stressful. But the more you can calm your nervous system, the more this will be bearable, whether it is UC or C. diff or some combo of the two. If you can spend time listening to soothing music, meditating, reading nurturing, distracting books, or doing other quiet things that you love, that will help you. (Having my husband read Harry Potter books aloud to me was one of the best things!
) You're doing a great job with the research part; make sure to also nurture and soothe your own spirits as much as possible.
My experience:
After a few years of UC, I had a severe flare in May 2016. I thought my usual flare-up meds would help me, but to my surprise, within three weeks I had gotten far worse. I had a gum graft two or three weeks into the flare that involved a course of antibiotics, and like you, no one warned me of the risks of C. diff from taking antibiotics during a UC flare. Within a week of taking the antibiotics, my flare-up symptoms became even worse, including a racing heartbeat and a new, excruciating, burning pain in the middle of my gut. (I think it was in my transverse colon.) I was tested for C. diff, but it came back negative, so we just kept putting me on stronger and stronger meds: Imuran, prednisone. (I had been on just mesalamine before--Apriso.) Still, I continued to lose weight and become weaker. After 6 or so weeks of this, my doctor urged me to admit myself to the hospital, which I reluctantly did. (I had also never been hospitalized before.) In the hospital I continued to lose weight and weaken, although being in the hospital made me much more comfortable--IV fluids, etc., plus the feeling of being taken care of and kept safe by experts. Finally, after 2 weeks in the hospital, a C. diff test came back positive. You wouldn't believe how ecstatic I was to get that result. (Actually, maybe many on this forum would believe it!) We immediately started me on vancomycin, the antibiotic most used for C. diff, and FINALLY after a week or so my terrible pain eased. I was left with "just" my severe flare-up, which was still kicking. Once the C. diff was gone, they started me on Remicade, again very reluctantly on my part. I just hate meds.
But I did stabilize and emerged from the hospital after a month, and have been a bit of a changed person since then. I have stayed in remission on Remicade; it has given me my life back.
This was, obviously, a grueling ordeal, which was why I didn't want to write about
it first thing. I didn't want to scare you! But my case was extreme, and I learned a lot. I hope that my experience can help others, like you. If my C. diff had been caught and treated earlier, it would have saved me a lot of grief.
I hope all of this is helpful and gives you more peace of mind, not more stress. All the best in your healing.