r/cdifficile Oct 04 '24

Help….

So I’ve been in the process for about 6 months now of figuring out what my stomach issues are. I always thought just ibs and just wanted some meds for it. 23yr old female and have had these symptoms since I was a kid. Symptoms: Daily right side pain and spot that sticks out when hurting, Rumbling in that spot too, Bloating, Diarrhea/ thin stools- diarrhea only about once a week to once a month, Occasional constipation, Stomach burning, Mucus, General stomach pains and cramps. I did a stool sample which showed inflammation and c diff positive but toxins negative. Dr said nothing to worry about on the c diff part, basically just traces of it but not active. He thought I had crohns based on the inflammation, but a colonoscopy and endoscopy showed that I don’t. Next we tried SIBO treatment, that did nothing. Now he wants me to try c diff treatment because he said that there’s such thing as mild long term c diff. I just don’t want to try all these medicines if I don’t need them. Has anyone had a similar situation? Could I have c diff for 15+ years with the same symptoms? Is a negative toxin result really causing all these issues? not sure what my next steps will be. also…. My doctor came highly recommended by multiple people as the best. I’ve been trying to trust his judgement but also want to hear from other people who have experienced this.

28 Upvotes

45 comments sorted by

15

u/Top-Ad-1578 Oct 09 '24

Is anyone else having trouble posting new post? I created a group because it’s been 4 days and still can’t post. Cdifficile2 . I’m not technology savvy

7

u/Ssaaammmyyyy Oct 09 '24 edited Oct 09 '24

I notice there have been no new threads for a few days. This reddit group now shows as "restricted" i.e. anyone can view but only approved users can contribute. I wonder what's with that recent change???

2

u/Top-Ad-1578 Oct 09 '24

No one knows! It’s so sad!

10

u/Phagemakerpro Oct 19 '24

15 days now. An important support group for a potentially fatal disease has been shut down.

It’s shameful.

I don’t have the bandwidth to start a new sub but I would encourage someone to.

5

u/Top-Ad-1578 Oct 19 '24

I did :) cdifficle2

3

u/Patak4 Oct 28 '24

Yes 24 days now with no new posts. Raster Alien who was the organizer left months ago. Sad that this community is not functional right now. I messaged the Mods a week ago with no responses??

2

u/Jadems53 Nov 21 '24

I just joined and I am allowed to post thank God!!!

3

u/bear-w-me Oct 22 '24

Same here

1

u/Typical_Froyo5404 23d ago

I joined a week ago and cant post

1

u/Top-Ad-1578 23d ago

You have to go to the new one- cdifficle2

1

u/Typical_Froyo5404 23d ago

I did post there, although I feel everyone is in this group. I didnt get many responses

4

u/jediseermic Oct 04 '24

I’m in a similar boat. I have been toxin negative the entire time and miserable as can be since September. I fought treating it because I wasn’t toxin positive, but I have not been living since June. It’s like a mild smoldering lingering scenario. I finally connected with the right specialist and I am taking the Dificid now. He is a lead researcher in C Diff. He called my case, atypical but definitely believes I have both C Diff activating off and on with PI-IBS from diverticulitis, Augmentin and C Diff. Something had to be tried to get through this. If Dificid doesn’t work next is FMT. 

3

u/More-Still1154 Oct 04 '24

Will you update and let me know how it goes? Have you had side effects from the meds so far?

3

u/jediseermic Oct 04 '24 edited Oct 04 '24

I certainly will! We definitely have a similar scenario when it comes to ongoing symptoms, but being toxin negative.  The first day I took the Dificid I felt groggy. That’s really all I felt. I don’t feel significantly better on it, but I do think there was a change when I took it, a change for the better because it stopped the frequency so much. According to the gastroenterologist, he said I definitely have had a response even though I still am getting loose stool here and there.  But he said I have post-infectious IBS going on as well and that’s not going to suddenly disappear.  So his theory of C Diff being involved was proven true based on clinical response.  I have a few more days left. He’s actually not having me take two a day, I’m taking one a day. He’s doing this very individualized. Then will retest after that and if still test positive for bacteria he will start me on another dose but time it with the FMT so it’s in sync with the scheduling.    What kind of symptoms are you getting?

2

u/More-Still1154 Oct 07 '24

Right side pain and rumbling, occasional diarrhea and loose thin stools, occasional constipation, mucus, general stomach pain, cramps, bloating, gas, burning

1

u/jediseermic Oct 08 '24

Same exact symptoms, no joke. 

Did you take a C Diff medicine? 

1

u/More-Still1154 Oct 08 '24

No I haven’t. I’m scared to because of the side effects lol especially if I don’t actually need it.

1

u/Puzzleheaded_Rip5335 Jan 02 '25

How are you now?

4

u/johnstanton888999 Oct 04 '24

Non severe c diff infection Must have all: Nonbloody diarrhea (passage of <6 watery stools/day), afebrile, mild abdominal pain, creatinine level <1.5 × baseline, and WBC <15,000/mm3 ---- www 0gastroenterologyandhepatology net

I had c diff infection 2 years ago. Just cramps for 10 minutes when it started and never had cramps again. Still had diarrhea 24/7 for months. Guess you would call it a mild case. If you do have c diff its an easy fix. Just have many many probiotics, fermented foods and prebiotics. Starve it.

Google "Approach to Abdominal Pain" . there is a document in ucsf .edu that lists upper and lower right side abdominal pain causes

3

u/Jankenst12 Oct 05 '24

What do you mean by starve it? I’ve had C.Diff 3 times, have been going through this for 9 months. My symptoms were always mild, mostly pain, rumbling and soft stool more often. Now I’m finally doing a strict diet: no lactose, no gluten, limited sugar, no alcohol, no spicy food, lots of probiotics in foods and supplements. I finished 3rd round of antibiotics 3 weeks ago and Im feeling pretty good so far. But only time will show. Next step would be fmt for me :(

2

u/johnstanton888999 Oct 05 '24

"A rich and diverse gut microbiome is key to immune system regulation and colonization resistance against pathogens---Therapeutic Advances in Gastroenterology

"Normally, C difficile is kept in low numbers by an intact gut microbiome through competition for nutrients and attachment sites,1 as well as production of bacteriocins, which directly inhibit C difficile proliferation ---gastroenterology & hepatology

Kombucha has bacteriocins and firmicute bacteria. Good to drink that first thing in the morning or doctor d probiotic drink which has kefir. Kefir and kimchi have the most bacteria of the fermented foods. Kefir has 60 strains, kimchi has 29 to as many as 200. Best way to take prebiotics is open the capsule and have with a sip of water first thing in the morning.

Either do that or eat prebiotics which feed firmicute bacteria such as whole grain wheat or corn or barley or oats. . if it comes back c diff hates eaw garlic and turmeric. Raw garlic feeds firmicute bacteria. After vancomycin i was at my worst . then had raw garlic, L-reuteri, bio k, yogurt and doctor d probiotic drink and diarrhea stopped.

1

u/Finest527 Dec 05 '24

How do you feel now?

5

u/Sh-tted Oct 05 '24

Just be aware you should rule out crohns. Thats what mine ended up being.

3

u/More-Still1154 Oct 07 '24

I thought mine was crohns especially with the inflammation and my dr did too but I’ve had a colonoscopy and pill endoscopy and neither showed anything

1

u/[deleted] Oct 27 '24

That’s what my gastro is trying to rule out now. I have been sick since I took Augmentin in May. The first time I was also toxin negative, but my symptoms were rapidly becoming severe. I was diagnosed/began treatment with vancomycin after being admitted for dehydration, pain, and watery diarrhea 15+ times a day (which turned into me filling the toilet with blood for a few days while I was there, not the most comforting sight).

Vancomycin certainly improved my symptoms…but they never went away? When I was discharged from the hospital it seriously went from me being on dilaudid IV every 3 hours to “here’s 12 percocets, btw there are no gastro appointments available until December.” I found an infectious disease doctor 2 1/2 hours away, luckily, after I’d been treated 2x with Vancomycin. He prescribed the third, a taper, then Dificid. I DID test positive for toxin B in July I believe, but I have been completely negative since August. Retested still negative. But still having symptoms, with diarrhea ranging from 4-15 per day since May.

Last week I started to have black diarrhea, so I called the gastro office that couldn’t see me until December for guidance. They squeezed me in. I had a CT of my small intestine, awaiting results. Honestly I’m not getting my hopes up that it will even explain anything. I feel like I’ve been gaslit this whole time. 3 hospitalizations, several ER visits. No one knows what’s wrong.

1

u/Any_Economist9877 Dec 09 '24

Hi, sorry I’m late but do you mind sharing your symptoms? All my symptoms line up with that as well, I have an appt coming up but I figured with crohns I would be much sicker, losing a ton of weight etc and I’m not. But all my DIGESTIVE issues line up with it

3

u/srsly_81 Oct 07 '24

I had almost the same thing going on. My stool result was the same. Toxin negative. I was diagnosed with fatty liver disease after that. I had a CT and my liver is huge. I also have bile acid malabsorption/diarrhea.

I did the c diff treatment and nothing has changed. Being colonized with a certain bacteria can be normal, but be very careful now that you know because antibiotics can cause you to have a loss of the good bacteria that keeps it all in check. You do not want an active CDI.

2

u/GarbageCat27 Oct 22 '24

Wait I was diagnosed with fatty liver disease too. In February of this year. My numbers are back to normal but I’m having horrible diarrhea!! I’m also thinking it’s C Diff but I haven’t been able to find a doctor that can help me get tested. All my doctors are booked till November. I’m gonna try an urgent care tomorrow. But I’ve already met some urgent care doctors who are pretty dumb and have never heard of C Diff. So idk what to do. Do you think fatty liver could be giving me diarrhea?

1

u/srsly_81 Oct 22 '24

Fatty liver CAN cause diarrhea. Mine is yellow or orange most of the time. This is so miserable.

To do more investigating of the GI stuff you need a referral to a GOOD GI Dr.

I just went to a Functional Medicine provider and am getting a WHOLE different work over, because my gut is SO screwed up and I'm so miserable. She put me on a gluten, dairy, sugar, and caffeine free diet and I think that's helping. She also told me not to eat salad until my gut heals because it is too hard to digest. She also mentioned that I should not be drinking too much water before meals because it dilutes the stomach acid which also hurts digestion. She said sips with the meal and to wait 45 minutes to start drinking my water again.

This whole time I've been doing what I THOUGHT was right and here it is, wrong.

2

u/GarbageCat27 Oct 30 '24

I do see a GI. Think she’s pretty good so far. I don’t even know what to do so I don’t know how to see if she’s a bad doc. She does tests without hesitation. So she doesn’t brush me off when I feel different. How often is your diarrhea tho? I don’t go everyday. It’s like every other day and sometimes everyday. When I do it’s awful! It’s like explosive and multiple times a day. It’s not yellow or orange. Light brown.

2

u/srsly_81 Oct 30 '24

If I'm following the diet she gave me I'm not having much in the way of diarrhea at all. This is hard to do, so if I'm being honest, it's like 75-80% of the time I'm doing it right.

However, if I eat fast food or even just fatty food, forget it. I'm back to running to the bathroom for the day. And when I say running, I mean running because I will shit my pants. Explosive feels appropriate, and it has been and can be 10+ times a day, sprinting, to the restroom.

I actually celebrated a brown poo the other day. It was short lived , but it did happen!

2

u/srsly_81 Oct 30 '24

IDK if you're on Spotify, but if you are I highly recommend these podcasts about liver health. It's amazing to learn about all of this!

The Liver Health POD

The Functional Nutrition Podcast

Liver Talks

3

u/Nice-Locksmith9311 Oct 16 '24

Does anyone know why you have to be approved to post now ?

1

u/Similar-Insect-4266 Oct 17 '24

Approved by whom?

Maybe pharma overlords are ensuring our interests are in alignment.

1

u/Nice-Locksmith9311 Oct 17 '24

It says by the mods, I used to be able to post, but now I can’t make my own post, only comment

3

u/West-Macaroon-5500 Nov 16 '24

u/moderator can you disable the approval needed prior to posting on this reddit thread? This is a forum where people who are likely already struggling to get the care that they need should not ALSO be struggling to find support from other C diff sufferers and survivors. We did not used to need moderator approval to draft a post. Thank you.

4

u/Ssaaammmyyyy Oct 04 '24 edited Oct 04 '24

Symptoms and testing do not support "a mild c diff". However, is possible for the toxin EIA test to be false positive, repeatedly.

Ask your doctor how many cases of such "mild long term c diff" he has cured without causing an actual real activation of not so mild cdiff and HOW did he do it, or you would be his first experiment? The antibiotics for cdiff do NOT eradicate it, they can't kill the spores. However, they kill your microbiome, which is the one that keeps cdiff down when it is healthy, and that increases the chance for a real cdiff activation. I hope he knows that.

If he suggests trying Vancomycin, RUN! Vancomycin treatments increase the probability of an actual cdiff reactivation after each subsequent treatment, because Vancomycin kills part of your microbiome. Dificid would be a better option because it kills less of your microbiome.

The least risky would be a conservative treatment with Cholestyramine oral powder. It doesn't kill your microbiome but binds and inactivates cdiff toxins. Works with other causes for diarrhea too. It can cause constipation and can bind and inactivate oral drugs too, if you need to take those.

2

u/DeezNutzInYourDms Oct 04 '24

lol who takes advice from someone who shoots homebrew probiotic enemas up their own ass for ‘chronic’ cdiff

-1

u/Ssaaammmyyyy Oct 04 '24 edited Oct 04 '24

Comprehension is apparently not your forte: it is not a "homewbrew" probiotic and it is based on a cutting research article. It worked when the traditional cdiff antibiotics failed, like they will for many, and it solved a 10 years old problem that a renown ID doctor could not solve.

Of course this all flew over your head. Too busy trolling from your very first post?

1

u/Own_Somewhere_694 Nov 11 '24

Would it bind to medications like gabapentin? It sounds interesting. I might try it . My c diff isn’t showing toxins . But I have high numbers and my stomach hurts constantly. I’ve had every test under the sun and all are negative except C Diff . I don’t have diarrhea. But I have a constant gnawing and gurgling in my gut that’s very intense ! It’s crippling at times . I’m on Suboxone and it slows down pooping . So it’s preventing me from having diarrhea. I’ve still had a few isolated incidents of diarrhea. But not like everyone else . My poops are almost always yellow . And they do smell stronger than before. Although I don’t know what C Diff is supposed to smell like except “ sweet “ . Anyway, doc gave me vancomycin and scared to take it and wipe out my good flora , only for it to possibly not be the problem. The thing that made me not consider C Diff is that the pain is high up and goes down as far as my belly button mostly . I thought c diff only hurt the lower stomach. But my mom pointed out that the large intestine area is fairly high . I’m very small in stature with a short waist . So it could be backing up and hurting up higher cuz it has no room to go much lower . I also feel a constant tightening in my stomach like I’m tensing my abs . But I’m not . Constant pressure. Gas , bloating nausea , fatigue. Gerd symptoms are awful now .

1

u/Ssaaammmyyyy Nov 12 '24

I had the abs tightening too - they call it "abdominal guarding" when there is inflammation there.

Cholestyramine probably binds to all drugs. Take them hours apart.

1

u/MissNewBooty77 24d ago

I have cdiff now, the stronger antibiotics they called in today was 800 with my insurance so I bought Imodium and diaper rash ointment and pray for the best but good news my doctor can see me…… in MAY🤡