Newly diagnosed

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Bern
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Newly diagnosed

Postby Bern » Mon Nov 05, 2018 6:27 pm

Hi all. I'm a 60 year old female who recently completed treatment for Sibo and cleared it. About a month ago, after two rounds of pharmaceutical and 2 rounds of herbal antibiotics I developed watery diarrhea 10-15 times a day, cramping, and just not feeling right. My doctor sent me for bloodwork and a cdiff stool test. Bloodwork was perfect, but my stool test was positive for cdiff. I'm on 14 days of Flagyl,( today is day 12). My diarrhea stopped on the 4th day, and they are mostly formed. I still have belly pain. It comes and goes, but today was a bad day, and yesterday was so good. If fact, today my appetite is off, and I'm very anxious and scared. Why do I still have pain if the diarrhea is gone? I've spoken to my doctor and she says is should lesson in a week or so, but my gut will take a long time to heal. I had a colonoscopy 5 years ago that was normal, but I'm worried this is something more. Any advice or thoughts would be appreciated. This disease is so scary. I'm a kindergarten teacher and my nerves are shot.

georgina
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Re: Newly diagnosed

Postby georgina » Tue Nov 06, 2018 1:41 am

The best indicator that Cdiff is under control is the fact that the D and the frequency went down but some residual symptoms such as abdominal pain (except the excruciating one) , discomfort , gas , rumbling , gurgling will still linger for awhile.The gut has been irritated and it takes time , patience and diets to heal it.

Bern
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Re: Newly diagnosed

Postby Bern » Tue Nov 06, 2018 8:14 am

Thanks so much for replying. I'm not sleeping over this. Two more days of Flagyl, and then I guess I just wait? I can't say that what I'm feeling is even pain....more like a tight squeezing feeling, and some gurgling and gas. Has anyone felt that? My GP diagnosed me, should I also see a GI? I feel like I'm losing my mind. Someone please help give me some piece of mind.

roy
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Re: Newly diagnosed

Postby roy » Tue Nov 06, 2018 10:20 am

The damage cause by c.diff is in the dirtiest area of your body but you cant see it.
It takes time to heal.
Compare it to acid damaging your skin, it's very similar.
The acid (c.diff toxin) that caused the damage can be neutralized but the damage is still there and has to heal.

MKW
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Re: Newly diagnosed

Postby MKW » Tue Nov 06, 2018 10:52 am

Hi, I suffer with hydrogen SIBO which I developed following recurrent c Diff and an FMT.
I experience cramping and pains. But I have to say there was a “particular” pain and type of cramping feeling I experienced during my bouts with c Diff that I have not experienced otherwise. I am guessing it is due to the bad damage those toxins due to the colon. And it hurts, and it’s frightening. Flagyl was way rougher on me than Vanco also, and has worse side effects. It is no longer recommended as treatment for c Diff, but it seems a lot of practitioners have not been informed of this and are prescribing without researching current treatment protocol.
What did you take specifically to treat your SIBO?
I am sorry you are going through this.
We just get trapped in a cycle of dysbiosis it seems.
Since I developed SIBO and began talking to others online, I learned that many of them attribute developing their condition to taking antibiotics also.
And it seems anxiety may be not just a psychological effect of gut infections and dysbiosis. There may be a physiological connection also. 90% of your serotonin is produced in your gut.

Bern
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Re: Newly diagnosed

Postby Bern » Tue Nov 06, 2018 11:20 am

My Sibo was before the CDiff, and I had both hydrogen and methane. I've cleared them, but I do think all the treatments for Sibo caused my Cdiff. I took rifaximin and neomycin twice and then herbals (oregano, berberine and allicin). Had massive diarrhea with the herbals and my dose was cut in half. I'm so scared. Will this belly discomfort, gas and tightness go away? I wonder how long I've really had the cdiff. It wasn't till I stopped the treatments that we tested for it. Is this pain all part of the healing?

MKW
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Re: Newly diagnosed

Postby MKW » Tue Nov 06, 2018 9:15 pm

You have put your gut through a lot, so it’s hard to say. SIBo treatment is not easy. I tried the herbal route. I ended up with such a bad reaction I had to stop treatment. My practitioner thought it was the berberine that caused bad D and that I had a severe die off reaction. Following that I had sharp abdominal pains for about three weeks. And that was just damage from the herbal treatments. They definitely hurt me.
I have never taken Rifaximin, but may soon.
I just had a breath test hydrogen reading of 144.
I can’t live like this anymore. I weigh 102 lbs and can eat 12 food items.So I will be risking c Diff if I take it.
Ask your practitioner about Enteragam.
I have been using it and it had greatly decreased the pain I experience with SIBo. And I have seen many posters on here who have been given it post c Diff.
It binds to bacterial toxins but not medications and nutrients like activated charcoal or clay.
Also, if your pain is from cramping antispasmodics like Levsin can help with pain.
Often probiotics are recommended post c Diff, but since you have had SIBo you may want to also ask if that would be best for you or not.
I am so sorry you are afraid... I was diagnosed with ptsd after recurrent c Diff actually. Lots of us have major problems with anxiety. You are not alone!
This board is a great source for accurate info about c Diff. Take some time to read the info on testing and treatment options.
Also, if you have questions, no matter how many, ask and keep asking :-) the moderators on here are VERY knowledgeable.

AllisS
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Re: Newly diagnosed

Postby AllisS » Tue Nov 06, 2018 10:00 pm

Herbal remedies are NOT any safer than prescription drugs; people tend to think they are, however, because they are "natural." What they are is UNREGULATED (by the FDA). I have a cousin who had to go to the ER due to passing out from irregular heartbeat after using a Chinese herbal concoction.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

Bern
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Re: Newly diagnosed

Postby Bern » Tue Nov 06, 2018 10:42 pm

I think the herbals were much more harsh than the pharmaceuticals. I guess I'll never know which treatment led to the c diff. My Sibo is cleared, but now to deal with c diff is torture. I've lost 25 pounds over the course of both treatments, and I'm so worn down. i have one more day of Flagyl, and then what happens? Is my gut totally destroyed? I've read on this site that most people still have IBS symptoms after the meds.... how do you cope with those and not think the c diff is back? I have a great therapist who has helped me so much, but my health anxiety is raging.
MKW, I'm sorry you are suffering too. Where are you now in your c diff battle?

MKW
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Re: Newly diagnosed

Postby MKW » Tue Nov 06, 2018 11:26 pm

I was cured by a fecal transplant in March 2017. No c Diff since. I have been tested twice over time due to D, but both tests were PCR negative. Since I have been on this site since August 2016, I have not seen anyone that was not eventually cured, although some have required more than one FMT. Fmt’s have almost a 90% first time success rate.

I say, always hope for the best and prepare for the worst with c Diff. It can recur, you can be fine for weeks and it suddenly come back. So, it’s important to have a plan for testing, and a plan for what would be your next treatment regimen with your doctor. But, most people are cured by one or two rounds of meds. That is the norm.

AllisS
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Re: Newly diagnosed

Postby AllisS » Tue Nov 06, 2018 11:47 pm

No, your gut will not be destroyed by C. diff. It's too bad that your doctors prescribed Flagyl, which is no longer a recommended treatment for C. diff. I wasn't cured with Flagyl, six years ago when it was still widely prescribed, but I did respond to vancomycin -- and there's a third, even more effective drug, Dificid. As for "most" people having IBS post-C. diff treatment, I don't think that's the case; "some" or even "many" isn't the same as "most."But in the event that you do have IBS afterward, the pattern and symptoms aren't the same as those of C. diff.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

Bern
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Joined: Sun Oct 28, 2018 9:31 am

Re: Newly diagnosed

Postby Bern » Wed Nov 07, 2018 8:24 am

Thank you so much for replying to me. You've really eased my mind. I have a few more questions....is it "normal" to feel this belly discomfort, like a tight squeezing feeling, with a gassy rumbling feeling? Between the Sibo and C Diff, I've had so much belly pain, and I'm praying for some relief soon. This feeling is not really painful, but it's enough to be noticed and uncomfortable. Almost like a spasm. Hope that makes sense. Thank God for this site. You are angels to help others.

MKW
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Joined: Mon Sep 26, 2016 9:49 am

Re: Newly diagnosed

Postby MKW » Wed Nov 07, 2018 10:50 pm

From what I know, there is really no "normal" discomfort after c diff. If you aren't having sharp pain or constant pain you are probably within the realm of normal. The damage from the infection itself possibly disrupts the gut brain axis and normal peristalsis and muscular contractions occurring in the intestines. You may be experiencing IBS like cramping, which may be spasming or irregular motility. If you try an antispasmodic drug, and it helps.... then this is the problem. I believe peppermint tea has antispasmodic properties, you could try this. It is also antinflammatory. The product IB Guard, sold over the counter, is actually peppermint oil. But, honestly, I would check with your practitioner concerning taking anything going forward even over the counter stuff, and do what they recommend given your recent SIBO ordeal. Definitely inquire about Enteragam.
If your BM's are mostly formed at this point and no D, then your medicine is working. The main thing to be concerned with is experiencing any watery D going forward, which could mean the c diff is recurring. You could have quite a bit of discomfort and abnormal gut activity for some time to come following this. C Diff is a nightmare... fortunately there are some new treatments in stage 3 trials now, and a new first line antibiotic getting ready to go into stage 3. I just hope these products prove successful, especially the microbiome restoration drugs.

roy
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Re: Newly diagnosed

Postby roy » Thu Nov 08, 2018 4:02 am

"microbiome restoration drugs"
These "newly invented" drugs bring a smile to my face.
In the past we call them FMT pills but they have never been approved.
Along came a drug company (several of them) and they have given poop a nice code name and are putting it through the required trials to become a medication!
Put simply they are going to be very expensive dried POOP!
Anything that describes itself as "microbiome restoration drugs" is probably a refined version of FMT, ie poop!

Bern
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Joined: Sun Oct 28, 2018 9:31 am

Re: Newly diagnosed

Postby Bern » Thu Nov 08, 2018 10:15 am

I took my last Flagyl today. That medicine is harsh. My doctor said a lot of the symptoms I'm having (gas, rumbling, cramps) could actually be from that and that I need to let it work it's way out of my system.
She doesn't seem concerned about them. I think the anxiety of this illness is just as bad as the physical symptoms. I want to feel normal again. It's affecting my sleep. I wake up in a panic and then can't go back to sleep. Have you all felt this?


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