Discussion Anyone else here ever had a c. diff infection?

[OpheliasFlowers]

So I'll try to make this short which isn't easy for me since I tend to babble. :)

I have a lifelong history of all sorts of medical problems on top of my severe generalized anxiety/social anxiety/PTSD and MDD. One of the things that has set of my anxiety ever since childhood is anything GI related...I don't exactly know why that is although I have a theory it's because I've always suffered GI issues and I just grew up getting more and more afraid of my own body and the pain and issues connected with GI problems (which affect one's life in so many ways. Other GI sufferers I'm sure will understand what I mean...)

So besides my 'usual' GI problems of chronic nausea, IBS, other bowel issues and stomach pain that no doctor has been able to determine the exact cause of in the last 17 YEARS despite scopes and some xrays and bloodwork, last June 2019 I developed a clostridium difficile infection, which is a bacterial infection of the intestines and causes terrible cramping, fever, HORRIBLE diarrhea, weight loss, nausea and just generally feeling like death. I had not had any of the common risk factors associated with contracting this infection, like recent antibiotic use, recent hospital stay, etc...I have a very poor immune system so they figure I just picked it up somewhere, which is another joke on me by the universe considering I RARELY leave the house except for doctor's appointments and I end up canceling a lot of those so I can easily go months and months without leaving home. I also have taken a daily probiotic for years, which is supposed to help keep c. diff bacteria in check and yet I still got this. :-/

The treatment is (ironically) more antibiotics but the problem is c. difficile is a 'superbug', like MRSA, and is really hard to eradicate and so relapses are common. Often, MANY relapses. Then even after "successful" treatment, you are never really considered cured because the bacteria produces spores that apparently live forever in your colon/intestines and can germinate any time the situation is right for them...so theoretically you could go 5-10 years in 'remission' (which is what they call it) and then suddenly redevelop the infection.Plus, the damage the infection does to your intestines can take a very long time to heal so you still continue to deal with many of the same symptoms you had during active infection -- but doctors don't like to retest so you never know "Is it just (what they call) post-infection IBS...or is the infection back?" And that's scary for many reasons, not the least of which is that while the infection is active you are VERY contagious. I can't begin to tell you all how much I've invested in bleach, gloves that I use every time I use the toilet, ER visits due to dehydration, and just feeling like a disgusting filthy pariah who shouldn't ever be around people because I don't want to chance infecting them.

I've also lost a lot of weight which I was already too thin before this; I now weigh 94 lbs at 5'8" so looking at myself is even more horrifying than it was before I got this. I am frightening to look at. I am trying to gain weight but never gained weight easily before, and now this has made it even harder what with the symptoms of the infection and the limited diet due to not digesting things well and the nausea and cramping,e tc. I've also resorted to wearing a Depends since last July 2019 which is beyond humiliating. :(

This infection has done my mental health in even more than ever, and I was in a bad, bad place BEFORE I got c. diff. I am terrified every day to just use the toilet because it's such a miserable experience. Every gurgle, pain and rumble in my belly makes me wonder if the infection is back or still active or what's going on, and the doctors like I said, are hard to agree to retest to see if the infection is active. It's so stupid. How much trouble is it really to test some poop?

Sorry this is such a gross topic. I just feel so alone and so afraid, and i don't understand why I keep getting more and more challenges and awful health problems thrown at me. This infection really sealed my decision to ctb. I can't go through years and years of living this way. This isn't a life anyway.

I just wondered if anybody else has gone through this infection or still dealing with it. I feel so alone. No one else I know has ever had this, and my dad is elderly and lives 200 miles away and doesn't really want to hear about it anyway and I have a sibling whom I don't talk to and no friends, so...this has been very hard and scary.

Thank you for reading. <3 This got a bit longer than I'd intended it to.

 

[so tired or manic]

so I read about half of this. will go back and read the rest later.

my cat had worms which took a few rounds of treatments to cure. if he could talk he'd probably be able to relate very well.

I have had gi problems which have been celiac or alcohol abuse related so I can relate to some of it, just not the finer details.

I hope you have some clearer days in the future, this sounds pretty terrible.

 

[OpheliasFlowers]

Thank you for your reply and kind words. I appreciate them very much.

 

[falloutcarter13]

This sounds so horrible, I'm so sorry you've had to suffer with it for so long... ((hugs))

 

[WillOxyWork]

Have you looked into getting a stool transplant? That seems to be the most effective treatment for c diff

 

[Irrelevant biologist]

Doctors dont like to retest because it isn't reliable. Once you have it, the organism can live dormant inside you and cause a false positive test. Just because you have symptoms doesn't mean it is always caused by the cdiff. They have to eliminate other possibilities first.

 

[OpheliasFlowers]

This sounds so horrible, I'm so sorry you've had to suffer with it for so long... ((hugs))

Thank you. <3 It has been very hard, not just because of the physical symptoms but also because of how it's increased my anxiety and made me feel like such a leper. When you have this active infection, if you to to the ER they have to gown up, wear masks, everything like they do now with COVID (and I got this before COVID hit). It's just been too much on top of what I was already dealing with and I feel like this has broken me.

Thank you again for your reply. I have seen your comments on other threads and you are always such a kind, compassionate person to everyone. Please know how much that energy comes through, even in a comment on a message board. I really appreciate that you took the time to read my long post, and to leave me a comment. And thank you for the hugs - those are appreciated so much as well and are sent back to you x2. <3

Have you looked into getting a stool transplant? That seems to be the most effective treatment for c diff

Yes, that would be the next step for me if/when the c diff is confirmed to be back again. I have had the initial infection and two relapses so I would now qualify for a fecal transplant. I didn't get into that whole thing in my original post (it got too long as it is! lol) but also so many people aren't even familiar with c diff and REALLY aren't aware of fecal transplants and when they hear about them, they get grossed out (which I understand). So I really appreciate that you mentioned it and know about it.

Right now most hospitals that do FMTs have suspended them due to COVID. Some are still performing them but not anywhere near me that uses the stool bank OpenBiome, which is where Id have to get my donor from as there is nobody I know who would qualify to be a donor. So....hopefully things will ease soon for everyone that COVID is affection, including FMT patients who are waiting to be able to get that procedure.

Thank you for your reply and for bringing this topic up. It is comforting to talk to people about this and I appreciate how kind and supportive (and knowledgeable!) everyone has been. This is an embarrassing thing to go through and being able to discuss it here helps and I am so grateful. Thank you again. <3

Doctors dont like to retest because it isn't reliable. Once you have it, the organism can live dormant inside you and cause a false positive test. Just because you have symptoms doesn't mean it is always caused by the cdiff. They have to eliminate other possibilities first.

I do understand about that (well, I am a little confused about part of that but will mention why in a second) and I try not to think every little gurgle or off-day is the c diff -- but it's hard because I already have such terrible anxiety anyway and this infection has put it into the stratosphere. :-/

I have asked a few different doctors this next question (as well as allll the time I've spent reading about c diff, it's treatments, just anything I can to learn more about how to manage this) and I understand about how the bacteria can colonize in a person and therefore produce false positives on a test...but I am unclear how the doctors can't determine the difference between an active infection and colonization and treat if necessary. I always have been given a PCR test, which to my understanding shows both the DNA (RNA?) of the organism, as well as the toxins produced by the bacteria during active infection. If the toxins aren't present, i.e. are negative, in a PCR test, then wouldn't the doctor be able to see it wasn't an active infection situation vs if there are toxins being produced?

I get so many conflicting answers from doctors, nurses, other c diff patients. It's so hard to know who to believe and what is "right"/correct.

Thank you for replying and explaining more about doctors' reluctance to retest. I assume by your screen name you know what you're talking about pertaining to this kind of topic and so I appreciate very much your taking the time to leave a comment. Thank you again. <3
I guess one of the main things that gets me so scared and defeated about this infection is that I was already sick enough with many other health problems...I sure didn't need THIS. But also because from what I understand, this bacteria will NEVER be gone from my body and any day, any time, it can just reoccur (although certain things might increase the chances, like taking antibiotics again in the future). I feel so tired from being afraid of this stupid bacteria, from constantly taking probiotics all the time because I feel terrified if I miss even one dose of them, being SO INCREDIBLY CAREFUL with my (very restrictive) diet, trying so so so very hard to put on weight. It's all exhausting and overwhelming and I just don't want to live like this for whatever time I'd have left here on earth. This c diff is one of the reasons for my deciding I just want this life OVER.

Thanks again to everyone who replied. I appreciate each of your comments so much.

 

[disabledandhopeless]

Yeah. Came back about 3-4 times. Oral vancomycin worked for me.

 

[OpheliasFlowers]

Yeah. Came back about 3-4 times. Oral vancomycin worked for me.

Isn't it frustrating how it is so hard to get rid of? :( If you don't mind sharing, may I ask how long between relapses you went - like weeks, or months, or...? I've read about people having it come back a year/s later and the thought of that always there, hanging over my head, is so discouraging and terrifying to me. I can't handle it. Have you been clear of it awhile now and are you able to eat a normal diet?

I'm so glad the vanco worked for you. I failed it twice and then took a course of Dificid and then a Dificid taper.

Thank you for replying to my thread, and I hope you are feeling well now and you will never have to deal with c diff again ever.

 

[disabledandhopeless]

Isn't it frustrating how it is so hard to get rid of? :( If you don't mind sharing, may I ask how long between relapses you went - like weeks, or months, or...? I've read about people having it come back a year/s later and the thought of that always there, hanging over my head, is so discouraging and terrifying to me. I can't handle it. Have you been clear of it awhile now and are you able to eat a normal diet?

I'm so glad the vanco worked for you. I failed it twice and then took a course of Dificid and then a Dificid taper.

Thank you for replying to my thread, and I hope you are feeling well now and you will never have to deal with c diff again ever.

Months! I was prescribed vancomycin everytime it came back and one day it eventually went away.

Yes I am clear of it for awhile now. I'm eating a normal diet but I'm eating a lot lesser than usual now. I'm still taking probiotics everyday!

In my case I tried metronidazole first but that didn't work so I got prescribed vancomycin. If antibiotics doesn't work for you, you should talk to the doctor about the transplant. Thank you for your kind words! I hope things will turn out better for you

 

[so tired or manic]

I've never heard of a fecal transplant. to me that's pretty fascinating and especially that it can work.

I get sick so often and I get fun out of trying to figure out what my illnesses might be. I'm correct most of the time and I'll certainly admit when I'm wrong.

I probably should have tried a healthcare profession, but I probably couldn't have handled the stress that comes with them.

I'm rambling.

I hope you've kicked it in the butt already, but the not knowing thing sounds fucking awful, so I hope you can find out that it's over with sooner rather than later.