Afraid it's back

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okaylo
Regular Contributor
Posts: 147
Joined: Thu Jun 16, 2016 6:32 pm

Afraid it's back

Postby okaylo » Wed Oct 31, 2018 12:34 pm

I have had cdiff many times. As a result, I have had 2 fecal matter transplants. The most recent one done in Oct 2016 after the first one in June 2016 failed. Since the 2nd FMT I have not been on any antibiotics with the exception of a 3 day course of Macrobid for a UTI. I got through that with no problem and took probiotics in conjunction with the Macrobid and for weeks on end after.

I refuse to take any type of medication and have been extremely careful not even taking an Advil or anything of the like since my fecal matter transplant. Even mints scared me for the longest time. I follow a careful diet and watch what I eat. In the past few months I have had wine and beer with minimal issues and no bowel problems. It actually relaxes my gut and calms the spasms. Anyways, this past Thursday I had beer and I woke up with loose stools and diarrhea. This has continued for 6 days along with nausea, cramping, an overall ill / flu-ish feeling, weakness, fatigue, shakiness, etc. I have been eating nothing but plain chicken, white rice, white bread, and plain turkey. Drinking plenty of water. I have tried ginger tea to calm my stomach and have also drank pedialyte. But nothing has helped. I spoke with my GI who did the transplants and he suggested Questran to bind me up and stop the loose stools. This feels a lot like cdiff and I am terrified. I asked about the alcohol and he said that alcohol is not a cause for cdiff and while it will irritate the intestinal tract, it would not cause a relapse and that a relapse would be caused by antibiotics. He also mentioned that if it was cdiff from the Macrobid, symptoms would've showed up soon after taking it and not nearly a year down the road. I was concerned that the alcohol could've killed off my good gut flora and jeopardized my transplant and he said it would not have jeopardized my transplant that was performed 2 years ago. He said we could test for cdiff as it has been 2 years since my last negative test but I told him I didn't want to go down that road again of the testing and testing as it has taken me 2 years and therapy to get over the trauma of having cdiff and I am still struggling with fear. I presumably got my last bout of cdiff from an uncle who was recovering from cdiff and I shared a holiday with back in 2015. Since then I have avoided him at all costs out of fear that he is still a carrier. I know 2 other people who had cdiff years ago and I have been around them with no issue. Everyone in my family thinks I'm nuts and has gone around him. They've had him to my parents house and I've refused to come. The last time he was over was 5 months ago. I've only used one bathroom in my parents house to avoid anywhere he has been up until a week or so ago when I said enough is enough and I didn't want to walk up 16 stairs to simply use the bathroom and started using another one. I have been in my parents house, ate meals there, touched everything they've touched, and used the bathroom and have been fine. I am so terrified that I picked something up from the bathroom he may have used 5 months ago. People keep telling me unless there was literally stool on the walls or all over surfaces and he was indeed sick, that I am fine and there is no way I have cdiff.

Last night at 1:00 AM I woke up with extreme stomach pain, nausea, shakiness, and urgency followed by diarrhea and feeling so ill. I again had diarrhea at 7:00 am and again at 9:00 AM. I am literally terrified. I don't know if I should take the Questran and see if it calms down, request a stool test for cdiff or what but I am scared. People keep telling me I do not have cdiff, my anxiety is taking over, the worry is making me sicker, and while the alcohol most likely upset my gut and has caused the ongoing D and feeling so bad that it is not cdiff and will pass. I don't know what to think anymore but I cannot keep living like this waiting for diarrhea to strike at any time and feeling like I'm dying. I've been dealing with cdiff and all of its worries on and off since 2014.

Any suggestions are welcome.

MKW
Regular Contributor
Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

Re: Afraid it's back

Postby MKW » Fri Nov 02, 2018 5:49 pm

Hi there! I think there is no way for an unexplainable D episode to not ever cause extreme fear is someone who had recurrent c diff in the past.
I spent the day home sick after this happening to me early morning, for no reason I can determine. I give it about 12 hours from onset, and if it doesn't progress or feel like c diff I take an anti-diarrheal. I take Immodium. I would say if you took an antidiarrheal and it didn't help much, to not continue to take it. In that case, it could definitely be c diff. But for those of us that to continue to suffer with PI-IBS, or SIBO like I do a long time after c diff resolving, it's OK to take meds for symptomatic relief. So you can have a more liveable life. You should try the Questran, and also inquire about Enteragam. These actually have to potential to bind to c diff toxins, so wouldn't hurt regardless of what is going on.
My SIBO got way worse recently due to trying to reintroduce foods, and trying a probiotic. I recently had a breath test reading of 144. You definitely may have caused a problem with the alcohol. But hey at least you got to live normal for a while :-) - Melanie

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: Afraid it's back

Postby NanciT » Fri Nov 02, 2018 8:35 pm

Hi

I remember you well, it sounds like you have been doing really well until recently. There can be so many reasons for D, or maybe the beer just did not sit well and upset your system. I have not been able to tolerate ANY alcohol since my diagnosis in 2014. I have tried several times and each time I get ill. Everyone is different.
If the D continues, call your GI, they may want to do other tests on you. It's been a long time since you took the low offender med.....I honestly don't see how it can be CDIFF. It just leaves us with terrible fear.

Check in with your GI. He is the person that should advise IF the D continues

Hang in there, this may be another Bump in the road

NanciT


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