1 year out - fearing relapse

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Ehdotgee
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Joined: Tue Mar 30, 2021 10:18 am

1 year out - fearing relapse

Postby Ehdotgee » Tue Mar 30, 2021 10:40 am

Hi all,

I am so happy I've found this forum. It's really helped with my education and understanding of this illness. I'm a 33M and was diagnosed with CDiff in March 2020 after having appendicitis. I was put on a 10 day course of Flagyl.

Throughout the year, my body has been slowly recovering. My movements were nowhere close to normal, but only around 1-2 a day. I had a lot of fearful moments but kept reminding myself of the 3x3 rule. After cutting out raw fruits and vegetables, things seemed to be generally trending in the right direction. I decided I wanted to talk to a GI this month just to make sure this was normal. However, here in Canada, you need to do a blood and stool test to talk to a GI. My stool test came back positive with CDiff toxins.

My doctor said that since it's been a year out, and I still have issues sometimes, that it is a mild case and prescribed me Vancomycin. I have NOT taken any of the antibiotics yet. He stated the GI would just prescribe the same meds. I've seen in the forums that you treat the symptoms and not the positive tests, and since I was generally OK, I wouldn't use them unless necessary.

Fast forward a week later after this discussion and I've had the worst string of days since the initial infection. 4x BM with 2 being WD, then 2x BM with 1 being WD, then a completely normal day, and now 2xWD this morning.

I've seen that it is really unlikely that I have a reoccurrence since it's been so far out, but this has been a brutal, random stretch. I have not taken any antibiotics, but I doubt the stress is helping. Any thoughts would be so greatly appreciated

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: 1 year out - fearing relapse

Postby beth22 » Wed Mar 31, 2021 12:57 am

Hi Ehdotgee and welcome to the site. You can find more information for new posters in the first forum.

Stress can definitely be a factor, but I would insist on seeing a GI. I had a positive test for over 2.5 years without the D and I did not treat, but if your symptoms are getting worse, then you may have to do so. It could be a new infection, but if you haven't taken antibiotics or been in a hospital setting, it may not be. A GI would not necessarily give you the same advice and I would do whatever you need to in order to get a referral to a GI. What type of stool test did you have? Was it a PCR?

Ehdotgee
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Posts: 5
Joined: Tue Mar 30, 2021 10:18 am

Re: 1 year out - fearing relapse

Postby Ehdotgee » Wed Mar 31, 2021 11:37 am

Hey Beth, thanks for getting back to me!

The laboratory has confirmed it's a PCR test. I've booked an appointment with my doctor on April 13 and will request to see a GI. I think he's getting fed up with me since I've already been to him a few times throughout the year and he has reiterated that it is IBS.

In the meantime, I've started Florastor (was on BioK+ originally), and will keep the Vancomycin in case things get a lot worse. The worst part is just waiting and hoping it's a flareup and nothing more serious. Fingers crossed!

Thanks again for the reply and guidance!

beth22
Long Time Contributor
Posts: 10392
Joined: Tue Apr 07, 2009 2:23 pm

Re: 1 year out - fearing relapse

Postby beth22 » Thu Apr 01, 2021 1:03 am

The PCR is a very sensitive test and may show positive even though you don't have an active infection. That is what I had, but here, the hospital follows up all positive PCR tests with an EIA test to see if it is an active infection and those were negative for me. You might ask your doctor about doing that. Hopefully, by the time you go, your symptoms will be better. Florastor has helped many. I don't tolerate it, but others have done well with it.

D1dad
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Posts: 270
Joined: Tue Mar 12, 2019 8:34 pm

Re: 1 year out - fearing relapse

Postby D1dad » Thu Apr 01, 2021 9:40 am

I’m not a doc and don’t even play one on tv. I just posted my two year success story and went through what your going through, several times. Pepto was a dear friend of mine and was a staple in my car, travel bag and medicine cabinet for a long while. Luckily I never had a doc who wanted to retest so I never faced what your going through. My case was pretty text book. 20-30 times a day. I had many days like yours and I figured if a dose of pepto fixed it then all was well. Also, when I had cdiff I had a fever, pounding heart and my gut felt like someone was inside me with a flame thrower. I never had those symptoms with my bad days. Nothing short of a medical necessity will get me to take an antibiotic again.

Ehdotgee
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Joined: Tue Mar 30, 2021 10:18 am

Re: 1 year out - fearing relapse

Postby Ehdotgee » Thu Apr 01, 2021 10:51 am

Thanks for the input D1dad and Beth! It really helps to hear about other people's experiences. Hopefully everything is all and well, just the waiting game now.

Thanks again, really appreciate it!

D1dad
Regular Contributor
Posts: 270
Joined: Tue Mar 12, 2019 8:34 pm

Re: 1 year out - fearing relapse

Postby D1dad » Fri Apr 02, 2021 6:44 am

Turning into a stunt double from (what about bob) is a pretty normal thing after cdiff. If your old enough to remember that movie? If not, watch it. You could surely use a good laugh right now. I’ve said many times over the last couple of years that if your symptoms aren’t what they were when you were diagnosed, then your probably just having a bad day. I traveled a lot for work so had a prescription for vanco on standby but thankfully resisted the urge to have it filled. Glad I did because it would have more than likely set me back.

Ehdotgee
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Joined: Tue Mar 30, 2021 10:18 am

Re: 1 year out - fearing relapse

Postby Ehdotgee » Fri Apr 02, 2021 10:45 pm

I have not seen that movie, but definitely could use something to cheer me up.

Is it too much information to ask how bad were your flareups and how long they would be? This week has been full of up and downs...

D1dad
Regular Contributor
Posts: 270
Joined: Tue Mar 12, 2019 8:34 pm

Re: 1 year out - fearing relapse

Postby D1dad » Sat Apr 03, 2021 6:19 am

It was a roller coaster for sure. Some weeks were ok and some I had the burning gut and nothing was normal using the restroom. To say anything less than six months out was even, or will be even close to normal would be a lie. I didn’t read how bad your case was or your symptoms but I just compared how I was when diagnosed to what I was currently going through. I figured if I wasn’t actually sick as opposed to just being not right, then no way was I getting on the AB roller coaster. Your basically starting with a blank canvas in your gut thanks to cdiff. It’s gonna take time to repaint that flora. Benefiber was recommended by my gi, who worked at the university of Michigan and was one of the first around my area to use the poop pills. It seemed as though he took cdiff much lighter than I did but looking back, the treatment plan was exactly what I needed, even though at times not what I wanted. I know I keep harping on pepto, but if you use the search bar you’ll see it helped many of us get through some dark days.

Ehdotgee
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Posts: 5
Joined: Tue Mar 30, 2021 10:18 am

Re: 1 year out - fearing relapse

Postby Ehdotgee » Mon Apr 05, 2021 4:45 pm

Thanks D1dad for all the insight. Definitely picked up some pepto.

Stay healthy and thanks for the suggestions. It helped a lot.


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