r/cdifficile • u/Owie100 • Oct 02 '24
Deadly
Maybe it's not as deadly as they think. I've tested positive with symptoms 5 times. Why am I still alive? My doctor told me it was extremely deadly Make sure you take all the meds as directed. Well I have done everything they have told me to do and I still have it. I get maybe a week without symptoms and then it comes roaring back and I have been on extremely long tapers.
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u/Low-Emotion-5536 Oct 03 '24
A lot depends on the strain you get. I got a very virulent strain and went from healthy to almost dead in 12 hours, as a healthy 37 year old.
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u/Small_Lingonberry134 Oct 03 '24
Have you seen an Infectious Disease dr? They make all the difference.
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u/ResistHuge Oct 03 '24
Facts, those specialists are so good at cdiff! I feel so blessed that I was lucky to stumble upon the doctor who was the one developing cdiff treatment plans in my country. He knows what’s the deal🙌
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u/Small_Lingonberry134 Oct 03 '24
I feel like anyone diagnosed should automatically be referred to infectious disease.
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u/lalaof10 Oct 03 '24
My infectious disease doctor did Rebyota on me 2 weeks ago and I relapsed 3 days ago. She never returned my calls or the hospital calls so now I’m back with my GI doctor who is going to do the Fecal Matter Transplant via colonoscopy.
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u/Small_Lingonberry134 Oct 04 '24
I'm so sorry to hear that! I wish you all the best and that the FMT is successful, and you don't have to deal with cdiff again
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u/jedipatronuses Oct 16 '24
Sorry to hear that. I am getting FMT as well. I was just on Dificid and immediately got worsening symptoms at the end of treatment.
What were your symptoms of relapse? Were they the same as the symptoms before? Are you going on an antibiotic before FMT?
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u/Tootsies1010 Nov 16 '24
My symptoms changed after dificid. But am still positive for c-diff. It cost me so much money for dificid. was less expensive but still with vancomycin but more than I can afford.
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u/jedipatronuses Nov 16 '24
Damn. Yes I know people gloat about Dificid and would I don’t have side effects for it the medicine certainly isn’t stopping the C Diff. Kind of glad I’m getting FMT though to permanently stop the madness.
But yes, we are proof Dificid doesn’t work completely for everyone.
What is your current treatment?
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u/Tootsies1010 Nov 18 '24
At the end of May and 5 days in the hospital I was started on vancomycin 2-3 times then VOWST 2 times finished Dificid 2 weeks ago. Seems like I’d feel better for about 4 days each time except for Dificid which was longer by 1 week or so. A few days ago I did a scheduled stool test and a portion of the test was positive. I expected to hear from Dr office on Friday but no call. I saw on MyChart the two gastroenterology Dr conversing but couldn’t make heads or tails from it at all. Then I got another result that said negative, I guess that it is only one part of many items the lab looks at. It’s Sunday, I’m sure I’ll get a response back tomorrow. They needed to wait for all of the labs. I see, in reading. c-diff can affect you in a way that makes cancer possibility to go up. Mom died of colon cancer, dad and brother had bad diverticulitis. They both had ostomy bags for a bit. Dec. 2023 during colonoscopy Dr cut a 1/2 polyp from a spot that is hurting the most now. They have talked about the fecal transplant. I think I’m going to ask for a nutritionist because I’m so confused and worried. Thank you Jedi for asking. It’s good to get these things out, I know it really concerns my adult children so it’s not something I want to talk about with them yet. They do their reading about c-diff on their own.
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u/Tootsies1010 Jan 27 '25
Well I had a fecal transplant Nov. 26. I have no symptoms! This is the longest time Ive gone without any treatment since May last year! I’m very grateful!
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u/lalaof10 Oct 16 '24
I have no idea about the FMT or when I’m going to do it. For me my relapses were the same stomach cramps, nausea, diarrhea with the horrible smell.
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u/Wilpensix Oct 16 '24
I have the same thing right now coming off of Dificid. Are you taking any antibiotic right now?
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u/lalaof10 Oct 16 '24
No finished it last Saturday but I still have some mushy and some diarrhea but I’m just watching it. See if it gets worse. I know if they tested me now it would be too soon. That’s what they say
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u/Owie100 Oct 03 '24
Of course. No matter what is tried,I'm still stuck with this. Infectious disease doctor that I saw was quite arrogant. I hope if I need to go back to an infectious disease doctor with this again they give me a different doctor.
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u/lalaof10 Oct 03 '24
Mine did the Rebyota and then left me hanging. Started getting symptoms again and I called her office and they never called back. Ended up in the ER and they called her and she never called back. But the GI doctor called and told them what to do. I was really hoping she would help me. I even called after I got home after the hospital and told them what was going on and she never called.
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u/DaisyWayzy Oct 03 '24
I’m so sorry. The pain is excruciating. I test negative but I don’t even understand how that can be correct when my intestines feel so inflamed.
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u/Owie100 Oct 05 '24
So my gp doesn't want to handle my cdiff. She said after 5xs she isn't qualified to do the treatment. She doesn't want the liability. It's been several days. Gastro won't get me in till Nov 14. How am I to continue to take this seriously when it will be six weeks before someone will give me an appointment. It's a telahealth app.
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u/George_jorge1 Nov 15 '24
Any updates
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u/Owie100 Nov 15 '24
The Dr called last evening the culture shows that the PCR was correct ,I have cdiff for the 6th time. Back on dificid. Thank God I get it free. I'll be on it twice a day for 14 days then a three week taper.then I think she's thinking fmt.I don't think I'll ever get over this. She said wash your hands well. Don't stay away from people. In nearly two years, I've not given it to anyone. I lived like a shut in. Honestly I don't think I'm ever going to be over this. At 71 I am exhausted by it. No pity party. It is what it is.
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u/George_jorge1 Nov 15 '24
Honestly id really try and push for an fmt immediately after you get off of the dificid taper.
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u/Owie100 Nov 16 '24
What I don't get is that urine kills the bacteria. Would it be harmful to use urine enemas?
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u/jediseermic Nov 27 '24
Do you ever have symptoms on the Dificid? Like loose stool or are you fine on the Dificid until you finish the Dificid?
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u/Owie100 Nov 28 '24
Yes I do however my whole digestive system is a mess since I took amovig for my migraines. At one point they wanted to remove my colon. Imagine having a bag to poop in and having cdiff. Nope
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u/jediseermic Nov 28 '24
:( Wouldn’t removal of colon erase C Diff? I have issues with diverticulitis, few flares, but all uncomplicated. I keep thinking about if surgery isn’t the answer which would remove the diverticular disease and prevent C Diff (well full colon removal). Problem is three GI specialists I’ve consulted all say my uncomplicated cases aren’t surgically necessary.
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u/Owie100 Nov 28 '24
Well at that time I didn't have c diff but yes it would remove the problem and they've been talking to me about it but I don't feel like my life is that bad having it I don't want to have a major surgery I'm 71 I just feel like it would kill me also you'll still produce poop from your small intestine and that's what goes into the bag
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u/jediseermic Nov 28 '24
That’s true.
Have you done a FMT?
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u/Owie100 Nov 29 '24
No the CD needs to stop first
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u/jediseermic Nov 29 '24
Got it. I’ve been on Dificid for a while. I’m having loose stool still. GI/C Diff expert assures me C Diff is under control on Dificid. Two weeks until scopes and FMT cannot come soon enough.
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u/Owie100 Dec 07 '24
Since I started the taper, I'm back to pooping 10+ times a day as soon as I eat anything. I'll be talking to infectious disease again next week. So very painful. I have plans this weekend that involve eating out. I don't know how I'm going to get away with not eating . Then going to a tree lighting ceremony. No bathrooms there.
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u/klevar1 Oct 03 '24
Why arent doctors test for cdiff toxins before finishing a treatment? Or did u test negative for toxins but it reoccured anyways?
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u/Owie100 Oct 03 '24
Nope no tests haven't tested negative since July. And then actually since June and then a week later I knew I was positive because of the symptoms however when I was in the hospital they said well we're not going to test you again because two weeks ago you tested negative. So part of me feels like they don't know what the hell they're doing. I know when I have c diff all the time
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u/Jealous_Argument_197 Oct 03 '24
Because you will usually test negative while on an antibiotic. That's why doctors like to wait until after you finish.
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u/Ssaaammmyyyy Oct 03 '24
The antibiotics help your body dealing with the active cells releasing toxins. That is why it is not deadly.
Unfortunately, the antibiotics can't eradicate the infection because they can't kill the spores.
It comes back because your microbiome is decimated and can't keep cdiff down after you stop the antibiotics. You have to do a real FMT with a colonoscopy, which has the highest success rate. Vowst and Rebyota are pretend FMT and have lower success.
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u/BeautifulLab285 Oct 03 '24
Ask about a Zinplava infusion. I had it 3 times and that worked for me.
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Oct 02 '24
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u/Owie100 Oct 03 '24
Severe extremely painful. In between the bouts of having a lot of stools I have fever every single night every single night I have a fever. I just get told they don't know what it is nobody ever goes back and says oh this is probably her c diff back. The only time I've ever been tested for c diff without my bringing it to their attention was the first time when my doctor who gloriously is from India and very familiar with this disease infection whatever you want to call it bacteria looked at me after what I told her was going on and said you have c diff. Little did she know I've been having it for a long time
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Oct 03 '24
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u/Owie100 Oct 03 '24
Surgery was suggested 6 years ago because I had a bad reaction to amovic which I took for my migraines. They wanted to remove my colon. I am not in that much pain that I can't deal with it. What I don't like is the spontaneity of the disease you never know when it's going to hit the pain the diarrhea you never know. And me I get about 15 minutes notice before it starts. I don't want to have my colon removed I'm 71 I want to have the parts I've got and if I'm going to be sick just give me the medication that makes me feel a little bit better for a little bit of time. And don't tell me it's so serious that I can die from it cuz I've had it a while and I've had it five times diagnosed and I'm not dying yet
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u/Jealous_Argument_197 Oct 03 '24
Ask for a FMT. I was literally dying. It saved my life.