C Diff is also in small intestine

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.
noga
Regular Contributor
Posts: 175
Joined: Wed Dec 28, 2011 5:55 am

C Diff is also in small intestine

Postby noga » Sat Jul 07, 2012 9:34 am

I suffer mainly from small intestine symptoms from C Diff (SIBO like, and more). And not intensive D (which is more colon symptoms)/

The old dogma was that C Diff is mainly in colon. Well it is definitely not only there. C. difficile is able to colonize the small intestine.

Here are only 2 example, from many I found.
http://www.ncbi.nlm.nih.gov/pubmed?term=19681954

http://www.ncbi.nlm.nih.gov/pubmed/22748233 - here they found c diff also in duodenum, jejunum, ileum.
It's in horses but they are mammals. and in can be inferred to humen, like it is being inferred from mice.
C Diff is a zoonotic disease.
C Diff can be positive in proximal site , but negative in rectal samples.
Also, a person can have simultaneously co-existence of different ribotypes/ strains of C Diff.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: C Diff is also in small intestine

Postby beth22 » Sun Jul 08, 2012 2:48 am

My symptoms are mainly small intestine symptoms as well - food intolerances, gas, bloating. I have tested negative in stool samples for about 1 1/2 years. I did test positive for SIBO, but not as bad as before.

What does one do for c diff in the small intestine? The vanco only made that part worse for me. Xifaxan helped some, but if one doesn't want to go on antibiotics, then what? FMT in the small intestine via ng tube or upper endoscopy can give SIBO, so it really wouldn't help the symtoms in that case. Do you have any ideas about how to help cure the small intestine?

noga
Regular Contributor
Posts: 175
Joined: Wed Dec 28, 2011 5:55 am

Re: C Diff is also in small intestine

Postby noga » Sun Jul 08, 2012 3:14 am

My symptoms are the sam as yours- food intolerances, gas, bloating, and more.
But I have tested positive in stool samples. I have no D at all.

vanco did the same as you to me.
I would never do FMT via ng tube or upper endoscopy , because these areas don't supposte to get large quantits of bacteria.
For now I don’t have any ideas about how to help cure the small intestine. I'm thinking about it a lot.
I'm quite "furious" about the doctors who try to dismiss small intestine symptoms because they are not real to them. and they give attention only when they see tangible D. I think if more people who suffer from small intestine symptoms whould know that it can be from c diff, that is there even if test are negative, then there will be much pressure and incentive on scientisits to research this area.

for now I thinks of 2 thins
1. maybe like borody's clinic calim- FMT enema will eventually "come up" to smaell intestnine
2. new antibiotics

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: C Diff is also in small intestine

Postby beth22 » Sun Jul 08, 2012 1:09 pm

I just wrote you a long post and pushed a wrong key and the whole thing disappeared - UGH! Will try again.

In 2009 I saw a specialist for SIBO (small intestine bacterial overgrowth). He is the doctor, Mark Pimentel, who made the connection between IBS and overgrowth of bacteria in the small intestine. I tested off the chart positive for SIBO then - one of the highest scores the doctor had seen in the thousands of patients that he has treated. It was right after I had stopped vanco and had a FT, but my symptoms came back, although I tested negative for c diff. That is when all my food intolerances started too. At that time, I was given two choices. The first, was to drink this nutritional stuff called Vivonex for 2 weeks and not eat anything else. The idea is to "starve" the bacteria. The problem was and is, that I lost so much weight, that I really did not want to do that. Also, it can mess up the adrenal glands and some people get yeast overgrowth. So I chose the second option of taking Xifaxan for 10 days.

After taking the Xifaxan, I did see an improvement in my symptoms. The doctor then wanted me to take another course of the Xifaxan and this time to take it along with Flagyl. I tried the Flagyl for a couple of days first and was not able to tolerate it, so I went back to only Xifaxan, but after about 2 days got severe D and had to stop. The D stopped when I stopped the medication and I did not test positive for c diff.

I think the reason that the Xifaxan helped me, is because I still had c diff in the small intestine at that time. Even though it did not show on a stool test, it responded to the Xifaxan. Later, when I relapsed with c diff after taking Cipro, a lab test confirmed that my strain of c diff was sensitive to Xifaxan. I think that is why the breath test was so high. Normally SIBO is positive with anything over 20% and mine was 150%. After the first round of Xifaxan it was about 50%, still positive, but better. Last year, I had a breath test again and it was 39% and this was with not taking any antibiotics since 2010. I think that the c diff was in my small intestine from the beginning, and the vanco did not erradicate the spores, but did kill off beneficial bacteria in both the small and large intestine and created this dysbiosis. Dr. Pimentel thought so too, or that it at least, was partly responsible. When I first got c diff, I did not have the classic D either. I used to be more on the C side and this was not good, as it kept the toxins inside. I got pseud. colitis as a result, with lots of M and then B in the stool and that is why they treated me with vanco from the beginning. In hindsight, and knowing what I know now, I would not have taken the vanco, but would have treated with probiotics, but no one suggested that and the GI I had at that time told me I could lose my colon, etc.

I know of some people with terrible SIBO and IBS who went on antibiotics for weeks and then did the stool enemas. They saw an improvement in symptoms, although I have not been in touch with them for some time, so I don't know if the symptoms came back or not. They did the initial enemas at home for a week or 10 days and then a "topper" as they call them, every two or three weeks for a while longer. It is a lot of trouble to go to, but my GI suggested I try the enemas. I am having an upper endoscopy first though to see if anything shows up in the biopsies.

Anyway, just passing along to you what I did and what I was told. I must say that I did not have as many symptoms after I had the FT in 2010, so maybe that would help some. At that time I had a double transfer - colonoscopy (which I could not hold in unfortunately) and the upper endoscopy. Maybe the upper was not such a good idea, as you pointed out.

If you find out anything, please post, as a lot of us are left with these food intolerances and IBS/SIBO symptoms after going off medication. I would definitely contact Dr. Khoruts since you are testing positive.

noga
Regular Contributor
Posts: 175
Joined: Wed Dec 28, 2011 5:55 am

Re: C Diff is also in small intestine

Postby noga » Wed Jul 11, 2012 2:14 am

sory I didn't respond to your post earlier. I don't know yet what to say. i'm reading now extensively, put allert 'difficle' at http://www.ncbi.nlm.nih.gov/pubmed , and several times a week I recieve new articles, and read them. when I will come across something, I will post.

meanwhile, I thinks there is this 'medical entity' that several of us have, all these small intestine symptoms and no classic D, and it is chronic (lasting for years).

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: C Diff is also in small intestine

Postby beth22 » Wed Jul 11, 2012 3:03 am

I think it is definitely some type of dysbiosis, at least in my case. I have been tested for everything and the only thing that comes up positive is the breath test for SIBO. The vanco kills so much good bacteria and makes other bad bacteria overgrow and yeast probably too, although in my case, they did not find it. The fact that Xifaxan helped me is probably indicative that it is some type of bacteria. The problem with the breath test is that it can't tell you which bacteria and a stool culture, even from an alternative lab, can't tell you what is in the small intestine that shouldn't be. The bacteria in the small intestine is different from the large and I was told that when there is bacteria that does not belong in the small intestine present, it causes this inflammation and dysbiosis. The SIBO specialist says that those patients should not even take probiotics because it is bacteria. I don't know if that is true - a little helps me, but I am one of those people who have bad reaction to many probiotics - get lots of gas, sometimes D, and cramping, so maybe the doctor is right. I don't know. I am going to try the stool enemas if nothing else shows up in my upper endoscopy and will see if it helps. If not then I guess I will have to take the Xifaxan and try the transfer again after so that I don't relapse with c diff.

Are you able to get that Mutaflor probiotic in Israel? You can't get it in the US, but I understand that in Canada and Europe you can get it. It has gotten good reports. Maybe that would help you.

noga
Regular Contributor
Posts: 175
Joined: Wed Dec 28, 2011 5:55 am

Re: C Diff is also in small intestine

Postby noga » Wed Jul 11, 2012 3:20 am

I also have bad reaction to many probiotics - get lots of gas and cramping. I did get mutaflor , and it was bad for me.
I think the doctor is right- no probiotics from upper. only enema from rectum.

debdee
Regular Contributor
Posts: 308
Joined: Thu May 27, 2010 3:25 pm

Re: C Diff is also in small intestine

Postby debdee » Mon Jul 16, 2012 2:08 am

Beth, I agree with all you said. I have the same issues. I'm thinking the c.diff is mostly gone from my large intestine, but still have some lingering in my small intestine. God willing, I will take the Xifaxan and do the home enema infusions. Probiotics seem to bother me when I take them, but help when I take them via enema.
Noga, thank you for all the research you do and for posting it. What you and Beth have both shared makes sense and explains some of my symptoms and ongoing problems. I have never had terrible "D", just loose stools and sometimes "C" with the c.diff.
Beth, how do I find a lab to test what my c.diff is sensitive to? I did have a comprehensive stool test and it showed my levels of good and bad bacteria. It went from NG (no growth) to 4. It showed the c.diff bacteria at 2. The bifido was at 1 and my Lacto bacteria showed NG. I need to get more good bacteria growing and then it will hopefully over power the c.diff bacteria.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: C Diff is also in small intestine

Postby beth22 » Mon Jul 16, 2012 2:35 am

The ID doctor tested my stool at a research lab to see if it was sensitive to Xifaxan. I know that Genova gives you a printout of the antibiotics and natural ingredients that are effective against the bacteria that shows up. I tested positive for proteus mirabilis and it showed which antibiotics would kill it and also which natural ingredients were effective - plant tannins in this case. I did not have them run a c diff test, but I assume if they did, they would also list which meds would be effective. You could call them and ask if they do it for c diff as well - ask if they run a culture and sensitivity on it.

I know that when I had my first breath test and it was 150% (off the scale) I was testing negative for c diff. But, a few months after that I took Cipro for another infection and I got the worst relapse ever of c diff - lost 7 lbs in a period of 36 hrs and wound up in the ER, yet all those months prior it never showed, but obviously was hiding out in the GI tract waiting for the right set of circumstances to make its appearance again. I wondered too, if the breath test was so high because the c diff was part of the "bad mix" in the small intestine. No way to tell unfortunately.

noga
Regular Contributor
Posts: 175
Joined: Wed Dec 28, 2011 5:55 am

Re: C Diff is also in small intestine

Postby noga » Mon Jul 16, 2012 2:48 am

In my case it is clear that I have C diff in small intestine.
- my symptoms mainly during 2 hours after eating. this is the absorption phase on a damaged mucosa
(by inflammation)
- I have no classic D, only soft stool and M- because of under-absorbed food
- I have pain in lower right abdomen. there is the terminal iluem.
- I have more that 30 ! positive toxin test, in the last 2 years
- it's chronic (2 years and no end)

I'm really angry that it is being hidden, because it's a silent chronic suffering and not dramatic and life-endanger.

read in articles, like these 2
http://www.ncbi.nlm.nih.gov/pubmed?term=19681954 http://www.ncbi.nlm.nih.gov/pubmed/22748233


I want to do micobiome analysis here http://www.secondgenome.com/
To see what is the specific pattern of my dysbiosis.

read my other posts. I'm copying here part ot it"
"
the chronic presence of c diff at the mucosal surface activate the immune system against him --> the mucosal barrier becomes inflamed --> the mucosal barrier becomes leaky--> antigens penetrate to the lamina propria layer (beneath the mucosa) , where more immune cells are being recruited ---> chronic inflammation--->the absorption mucosa is damaged

2. c diff secret huge amounts of toxins (A, B, binary, and more) that are cytotoxic=killing cells --> the absorption mucosa is damaged

When the absorption mucosa is damaged, then --> each food that reach her and waiting for its processing is causing this discomfort, and is less efficiently absorb ---> soft stool ( not absorbed efficiently)"

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: C Diff is also in small intestine

Postby beth22 » Mon Jul 16, 2012 12:12 pm

I think that the c diff did damage my lining of the small intestine, although in 2009, when my food intolerances were at their worst, I had a capsule endoscopy, where a camera takes pictures of the entire length of the small intestine and they did not find anything. The doctor who read the pictures said perhaps there was slight inflammation. Now they want to do another of these tests, but my insurance won't authorize it. I don't think it would do much good anyway. I think that I have the "leaky gut" for sure as my symptoms fit it completely and my GI said probably it is too.

My symptoms of gassiness and indigestion are after anywhere from 1/2 hour to 3 hours after eating. If I eat dairy, then that is followed by D. Sometimes, however, I will get D the next day or even a day or two later after I ate something. If I eat cooked spinach, for example, I won't have a problem with it when I eat it or that night, but sometimes a couple of days later, as it passes through the colon. I can tell because spinach tends to darken the stool and it coincides with the problem, but not always. Now it seems, when I eat a lot of bread products, I have more symptoms and I am wondering if I have developed some gluten intolerance. My blood tests from before were negative, but when the doctor will do the upper endoscopy, he will take a biopsy to see.

It is very discouraging. The treatment seems to be taking Xifaxan and now a combo of Flagyl and Xifaxan and then for those of us who have had c diff, it means we risk a relapse of the c diff. In my case, I can't tolerate Flagyl anyway, and the Xifaxan is really hard on my system too. I would have to do a transfer with enemas after taking Xifaxan so that I don't relapse. My GI said to try the transfer without it first and if it did not help, then do it with the Xifaxan prep. It just seems to go on and on.

If you are still testing positive, Noga, then I bet the c diff is in your small intestine. It may not be higher up, but like with me, it is probably in the terminal ileum for sure. My ID and GI both said the spores like to hide in there. That is why when doctors do a colonoscopy transfer, they try to deposit the stool into that terminal ileum. I hope you can find someone to do this transfer for you. I know you have the problem with finding a donor. Hopefully Dr. Khoruts can help you.

noga
Regular Contributor
Posts: 175
Joined: Wed Dec 28, 2011 5:55 am

Re: C Diff is also in small intestine

Postby noga » Mon Jul 16, 2012 12:35 pm

In me also, the symptoms of gassiness and indigestion are after anywhere from 1/2 hour to 3 hours after eating.

Xifaxan and flagyl didn't help me

I think your GI is right about to try the transfer without it first and if it did not help, then do it with the Xifaxan prep.

I'm still test positive all the time, and that is why I'm sure c diff is in my small intestine. In the terminal ileum for sure, and maybe a bit higher.
Spores like to hide in the crypts (these are the "valley" between the villi of the small intestine).
The terminal ileum is very improtant area, in this context.

Yes, I have a big problem to find a donor I can trust there is no infectious risk from him.

debdee
Regular Contributor
Posts: 308
Joined: Thu May 27, 2010 3:25 pm

Re: C Diff is also in small intestine

Postby debdee » Mon Jul 16, 2012 6:48 pm

Thank you, Beth. I will check with Genova Lab. I called Meridian Lab and the gal I spoke with said they may be able to do it, as well.

Noga, can you come to the US and get an Rx for Dificid. I've read that it kills the c.diff bacteria and also inhibits the spores.

kenvh
New User
Posts: 8
Joined: Tue Mar 13, 2018 4:46 pm

Re: C Diff is also in small intestine

Postby kenvh » Tue Mar 13, 2018 5:10 pm

Did u guys had a positive cdiff toxin stool test from the small intestine? Or did u mean that the breath testing for sibo was positive?

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

Re: C Diff is also in small intestine

Postby roy » Tue Mar 13, 2018 6:18 pm

This thread is 5 years old so you won't get replies from these posters.
Start a new post of your own.


Return to “General C. diff. Discussion”



Who is online

Users browsing this forum: No registered users and 22 guests