I think it’s coming back :(

[mathewb]

I have been treated for c diff twice now. The first time in january and I was treated with two weeks of Flagyl. Then about 11 days later, symptoms came back and my doctor decided to treat again, this time with oral Vancomycin for 10 days. It’s now been two weeks since I finished the oral vanc and I had soft stool and D 4 times total yesterday. No stomach cramping yet. I’m going to wait for 3 days of D 3x or if symptoms get worse, but at that point I will reach out to the dr again. This has been such a frustrating experience. We have a vacation for Hawaii planned next month, but if I have to cancel- it won’t be the worst thing in the world. Health comes first.

[roy]

Dont test again unless the "D" is loose enough to take the shape of whatever container you do it in.
It's always best to be prepared if you do go on a vacation so ask for a supply of vanco to take with you.
If I had the choice of having D in Hawaii or having D at home Hawaii wins!

[mathewb]

I didn’t even know I could ask for a supply of vanc to take with me on vacation. Thanks for that info!
And thanks for the tip about the D should be loose enough to take the shape of the container. That’s a great way for me to know.
I’m calling my dr in the morning cause so far, today hasn’t been a good day so far with bathroom trips. Thank goodness I can work from home when needed.

[mathewb]

Just wanted to give an update. My symptoms got worse since this weekend. The symptoms started on Saturday (went 3 or 4 times), Sunday went 6 times, 7 times the day after. Then on Tuesday I tried some pepto and things started looking better. I went 3 times that day, 2 times yesterday, and today, haven't gone yet. I'm taking pepto twice a day (2teaspoons 2 times a day). I saw a GI specialist yesterday who gave me a prescription for Dificid (10 days). I gave my stool sample yesterday so he said wait until we get the results, then if it's positive, fill the prescription. I have an appointment with an ID specialist with a major health system in my area on Monday. I'm curious what he will say as well.
At this point, since my symptoms are improving with pepto, I'm not sure I need to take any treatment. But of course, I will wait to see what the doctors say and what the test results are. I'm just surprised the pepto has been helping so far. I wasnt expecting it to, but I'm definitely not a c diff expert!(Crossing fingers my symptoms don't get worse).

[beth22]

Pepto helped me a great deal with PI-IBS. When I had a relapse of c difficile, it did not help. So, it is a good sign that it is helping. However, I did have low-grade c difficile once, but symptoms were mild and my ID and GI both said to take Pepto with meals. I did for a few weeks and when I re-tested, the c diff did not show up anymore. It does have some anti-microbial properties. Maybe you had some other kind of bug. Were you tested for anything else?

[mathewb]

Thanks for your reply Beth. The GI doc did not test for anything but c diff. I am still waiting to hear results of the test. So far I did not go yesterday, had some slight stomach cramping. Today, I went once so far and it was not D. I am able to eat more which is great. I am still taking the pepto bismol twice a day. I guess I can only take it one day at a time and try and take care of myself the best way I can.

[mathewb]

Just got the call from the doctor, test came back positive for c diff. I told the GI dr I haven’t gone at all yesterday and only once today but he still wants me to take the Dificid. I see the ID doc on Monday so a part of me wants to wait and see what the ID doc says. I will see how this goes. The Dificid is coming from a specialty pharmacy so I may not have it until tomorrow anyway.

[roy]

Treatment does not "cure" c.diff it kills the active c.diff that's causing disease.
Once treatment is over any remaining spores "hatch" and you either relapse with symptoms or the body deals with them and completes the cure.
During that time a test will be positive.
That's why experts who wrote the guidelines say dont test but go on symptoms.
Personally I would not be taking anything if I had formed stool.
Any Dr that treats based solely on a positive test is not following treatment guidelines.
See what the ID says.

[mathewb]

Thanks Roy. That's what my plan is- to wait to see what the ID doc says on Monday (my first appt with him). I plan to keep taking the Pepto twice a day and see if symptoms get worse and go from there. If I can hold off on taking it until seeing the ID doc, I will. The GI doc called the Dificid into a specialty pharmacy that is mailing the med to me, but I dont plan on taking it unless the symptoms get worse.

It is so nice to have people to talk this through with. Thank you, everyone.

[roy]

Hope you dont have to pay out of pocket for it, very expensive!

[mathewb]

Yes I was worried about that too. The pharmacy said it's covered by my insurance, but not sure what my copay will be. I also got the coupon from the dificid website- but who knows what it will all come out to.

[mathewb]

Another update, I found out an old friend is an ID doc at a major hospital in the area and got in touch with him. He said not to take any treatment without symptoms and I don’t seem to be having any right now so I won’t be taking the Dificid when I receive it. He was fine with the pepto for now. He also told me the ID doc I am seeing on Monday is an expert in c diff and I am in great hands with him. This dr I am seeing runs the FMT program at that hospital. I feel very relieved at this point. He did say if I don’t have symptoms on Monday, the doc probably won’t test for anything and may refer me to their hospital GI for further testing of other things. I hope my Monday appt goes well, and I feel I am in better hands now.

I have learned so much from everyone on this site. I appreciate your help and advice so much!

[roy]

You probably wont need the GI appointment.
Your improving daily so "if it ain't broke dont fix it".
Take a first aid kit of meds with you on your trip but you will probably be fine.

[mathewb]

Thanks Roy! What do you think brought on the GI distress (D up to 7 times a day)? Probably something I ate? I am starting a food diary to see what sets me off. I was just very worried with only being able to eat oatmeal and bananas last weekend until I tried pepto. I know pepto shouldn’t help true c diff infections. But just curious of your thoughts. Thanks again :)

[roy]

Could have been anything including a flare of c.diff that your immune system dealt with!
The perfect recovery is where the immune system does its job and "cures" itself as nature intended.