How to Proceed? Positive again :(

This forum is for discussions related to C. diff. including symptoms, doctors, medical advances, medications, If you are a new poster (joined within the last month), you can post more often for two months from your date of joining. After that time, one post per day only about "you." You can post more often to support others. Post other topics in Free Form Discussion and Chat Forum.
hopenow
Regular User
Posts: 31
Joined: Thu Sep 27, 2018 12:23 am

How to Proceed? Positive again :(

Postby hopenow » Wed Nov 07, 2018 10:39 am

Hi All,

I have made a new thread as the other got a bit long.

To summarise my problems:

C diff positive around 5 weeks ago, given 2 weeks vanco during which all was great.

Around 10 days ago, started getting inconsistent BMs with M and going 3x a day and a lot of lower abdominal burning pain.

Went to a doc this week (not my usual as she cannot see me for 3 months), and was given flagyl and a retest which came back positive. Have not taken the flagyl due to concerns with effectiveness and the fact it is no longer recommended etc from here.

Woke up today with Awful, awful pain in my stomach and bad D - not sure if this is the stress of finding that positive result yesterday or a total relapse.

I am just looking for some advice. I was not planning on retreating unless the D came back, which it has today. Just to add, I have a GI appointment in 9 days which was for unrelated issues, but I was just going to discuss with him.

I was thinking to see if it happens again tomorrow, or another 12x today. If so, I will go to urgent care and ask for more vanco? How would you deal with them saying take the Flagyl your doc prescribed?

Thanks for the help all, sorry to keep posting.

sammyp
Contributor
Posts: 90
Joined: Thu May 24, 2018 2:08 pm

Re: How to Proceed? Positive again :(

Postby sammyp » Wed Nov 07, 2018 3:55 pm

Probably not what you want to here but sounds like a relapse to me. If you're having copious D, that's usually the case. Unfortunately reoccurance happens for many after first treatment.

I am not a doctor but can say what I would do in your shoes. I would not take flagyl. You have been treated once already and have now relapsed. Even when flagyl was recommended it was not recommended for first relapse. You will now need Dificid or a Vanco taper/pulse regimen (which I completed 11 weeks ago with no relapse).

9 days is too long to wait to not treat CDiff. You have some options. Call your GI, talk to the triage nurse and tell them you have a positive test result and need to be see ASAP. If they can't get you in, ER or urgent care. Print the FDA guidelines for treating CDiff and bring with you. Refuse flagyl if they try to push it on you. It's the wrong medicine for your situation.

I hope you feel better soon.

hopenow
Regular User
Posts: 31
Joined: Thu Sep 27, 2018 12:23 am

Re: How to Proceed? Positive again :(

Postby hopenow » Wed Nov 07, 2018 4:12 pm

Thanks for your reply.

I only had D once today and it is the first time I have had it since the c diff. I will wait and see what my next BM is like, then I will do exactly what you said if it is bad again.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: How to Proceed? Positive again :(

Postby roy » Wed Nov 07, 2018 5:12 pm

Having D once does not indicate active c.diff.
If it increases to copious watery D at least 3 times a day and lasts at least 3 days (or gets worse very fast) it needs attention.

If you think you need treating (you probably dont!) see a different Dr, yours is close to useless!

sammyp
Contributor
Posts: 90
Joined: Thu May 24, 2018 2:08 pm

Re: How to Proceed? Positive again :(

Postby sammyp » Wed Nov 07, 2018 7:52 pm

Agree with Roy. If it's copious, frequent D, see a doc. But D here or there is completely normal on recovery. Three day rule is key - 3 days of D three or more times a day otherwise, it's probably something you ate (our stomachs are sensitive post CDiff) or your good flora fighting off infection (which is a good thing!)

hopenow
Regular User
Posts: 31
Joined: Thu Sep 27, 2018 12:23 am

Re: How to Proceed? Positive again :(

Postby hopenow » Wed Nov 07, 2018 9:17 pm

To be honest, the one thing bothering me more than anything else is my whole lower abdomen is sore and crampy, and when I do have to go for a BM the cramps are almost unbearable. Has anybody else experienced this?

sammyp
Contributor
Posts: 90
Joined: Thu May 24, 2018 2:08 pm

Re: How to Proceed? Positive again :(

Postby sammyp » Thu Nov 08, 2018 12:04 am

I have terrible cramps in the morning before having a BM. And I'm 11 weeks into recovery. I think this is my "new normal" for now. You could inquire with your doc about an antispasmodic drug like Bentyl or Levsin for the cramping. Some here have had luck with it. As for the belly pain, I had that constantly for over a month following treatment. Heating pad and Tylenol were my go to. Even now I still get twinges all over my intestines. This is all normal recovery.


Return to “General C. diff. Discussion”



Who is online

Users browsing this forum: No registered users and 22 guests