Hi - Newly Diagnosed Today

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Kuro
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Hi - Newly Diagnosed Today

Postby Kuro » Thu Mar 29, 2018 6:12 pm

Hi all,

I've been having problems with some upset stomach and mild abdominal discomfort since sometime around mid-February. I've had mild symptoms suggestive of IBS all my life, so we assumed I was in a flare when I finally went to the gastroenterologist. He's good and very thorough. Still felt 99% sure I had IBS, but sent me for tests which naturally included blood and stool.

Unfortunately, I received the news today that I tested positive for C Difficile. I have health anxiety, so a persistent and possibly dangerous diagnosis like this has me just mortified. Maybe that's unwarranted, I don't know. I've just read around and seen a lot of terrible stories so far. If I didn't have Medicaid, I wouldn't be able to see the GI specialist or do his treatment. Forget about a faecal transplant, as Medicaid won't cover something they consider experimental.

Everyone on the professional side, from the GI specialist down to the pharmacist, says this can be easily treated and not to panic. I have been prescribed Vancomycin 4x/day and told to take Align probiotic along with it. From what I've read, I feel like a walking hazmat zone as far as being contagious, which is important given I live with my folks due a different physical disability. I look around my room, wondering how I'll bleach it all, not knowing if I need to throw away things I can't like my collection of books. It's overwhelming.

I don't want to drag anyone down, but I'm just somewhere between at a loss and panicked. Things seem so grim as I read what everyone's going through, and with the knowledge that my own resources will only allow me to try so much. Plus, this sort of sounds for life even if cured, as I understand it. Ugh.

AllisS
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Re: Hi - Newly Diagnosed Today

Postby AllisS » Thu Mar 29, 2018 6:36 pm

Hi Kuro, welcome to our site. When you have a chance, please take a look at the guidelines for new posters on the intro page.

You do NOT need to bleach your room or discard your book collection or anything else. The only exception would be items that are soiled, which seems unlikely in your situation. If you have undergarments or bed linens that are soiled, you should wash them separately, using a hot-water setting and bleach. I understand the stress you're feeling with the diagnosis; I was also (mis)informed, by the RN of my then-GI doctor, that I "needed" to "sanitize" my home. I switched to a C. diff expert doctor to manage my illness; he told me, right off the bat, that the sanitize-the-house advice was nonsense. I hope that sets your mind more at ease on that score.

If you share a bathroom with your family, you can minimize the chances of transmitting the infection (though it's rare that family members contract C. diff) using a few simple measures. Substitute paper towels for regular towels. Purchase a canister of Clorox Germicidal Bleach Wipes online, e.g., via Amazon. (For some reason, they are not sold in retail stores, not even in pharmacies. These aren't the same as regular disinfecting wipes.) Make sure to use disposable vinyl gloves while handling them. You can use them to wipe down hard surfaces including door and toilet handles and knobs, countertops, etc.

Fecal transplants are used only as a last resort; you're not "there" yet and chances are will not be in need of one. Vanco takes care of the C. diff for most people; when it doesn't, a newer drug, Dificid, can be prescribed.

C. diff is not "for life," though anyone who acquired it in connection with taking an antibiotic tends to have more anxiety about taking antibiotics again. You'll find much useful, experience-based information about antibiotics and other topics on this site.

Best wishes for a quick recovery.
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

Kuro
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Re: Hi - Newly Diagnosed Today

Postby Kuro » Thu Mar 29, 2018 10:25 pm

Hi Allis,

Thanks for the information. I will take it to heart.

Honestly, we were totally taken aback when we read around the site about how serious this is. When the GI's nurse called, my mother (who took the call) says the nurse relayed, "He has C Difficile. We're prescribing some antibiotics for him. Make sure to have him wash his clothes separately with bleach, bleach down his bathroom, and do the same with his linens. Switch to paper towels instead of hand towels and keep hands well washed." (paraphrasing, but basically that)

They said absolutely nothing about the more serious impact of this. Do some people really take just a course of Vancomycin like that and get better, move on? Apparently, the way she discussed it made it seem like not a huge deal.

Now that we've read what we've read, my mother is scared to the point of crying and I feel badly about that. It didn't help that my brother told her when he worked at the hospital, they put people with C Diff in isolation and had to go in to see them with gowns, masks, etc.

beth22
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Re: Hi - Newly Diagnosed Today

Postby beth22 » Thu Mar 29, 2018 10:59 pm

In the hospital they put anyone with any kind of infection in isolation. It can be a wound infection even. My husband shared my bathroom and bed and he never got sick. Using good hygiene is important, but don't go overboard. Allison has given you some good information. Yes, many people are cured with one round of antibiotics. If you were ever to need FMT, it gets billed out as a colonoscopy and insurance will cover that. That is if nothing else works. Give your meds a chance to do their job.

Kuro
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Re: Hi - Newly Diagnosed Today

Postby Kuro » Thu Mar 29, 2018 11:26 pm

One more question, sorry...

My understanding is that you get sick from C. Difficile by first somehow getting the spores into your system, and then getting ill or taking an antibiotic. The thing is, I wasn't ill around when this started and it had been quite some time since I had taken an antibiotic.

My only symptoms with all this have been loose stools with an odor once or twice a day (sometimes not even that), and abdominal pains of mild sort. Sometimes mucus with the stool. No blood, no fever, nothing else like that.

Should I consider requesting a retest before taking the antibiotic, maybe?

beth22
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Re: Hi - Newly Diagnosed Today

Postby beth22 » Fri Mar 30, 2018 1:43 am

Some doctors would not treat based on your symptoms. C difficile can go away on its own if it is mild. Are you taking probiotics? A re-test might not be a bad idea. What type of test did you have? If it was a PCR, it would show if you are a carrier of c difficile. Many labs now follow up a positive PCR with an EIA to see if you are producing toxins. I have had a positive PCR for almost two years, but I do not have an active case, as the EIA is negative. My doctor told me not to treat that and I haven't. I would talk to your doctor about these concerns and ask if you can be retested, especially if the result is based only on a PCR test.

Align probiotic only has one strain of good bacteria. You might want to try and take a multi-strain. I take VSL#3, but there are others that do not have to be refrigerated. Align gave me D, as did Culturelle.

Kuro
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Re: Hi - Newly Diagnosed Today

Postby Kuro » Fri Mar 30, 2018 2:40 am

Hi Beth,

I'm afraid I don't know which test they used to get the positive. I also don't disagree that something is going on, because basically every visit to the bathroom where I need to go continues to have the loose stool issue described above. The test orders had a *lot* of stuff on them for the blood and stool respectively, but I remember C. Difficile because it was at the top of the list for things to be checked. I just don't get it, though, because the common thread for having C. Diff seems to be antibiotic use and I haven't used any in some time.

I know this sounds out there, but hey, sometimes psychiatry isn't enough to keep your fears in check. I read some websites before I found this forum, and based upon those, I've had the fear that I'm facing a possibility of death. It's no wonder I panic. Even then, it's a bit upsetting to feel like a leper, as someone else had posted. Probably a way thin chance of the death part, at least, eh?

Not sure if I will ask for a retest, anyway, or just trust the results and my GI specialist. He's very good at what he does, and I have to believe he wouldn't be giving me Vancomycin if I didn't need it. The dosage is 125mg, 4 times a day for 14 days. Trying to figure how I'll space that out to fit all four in one day, since it unfortunately doesn't match up with the other medications I take.

With all of that negativity stated, I do want to offer the positive that I'm grateful to have found the forum and such helpful, informative moderators. Thank you for that. I'm trying really hard to be mindful that I'm only 33 and don't have any risk factors, so it's very likely not the end of the world.

Kuro
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Re: Hi - Newly Diagnosed Today

Postby Kuro » Fri Mar 30, 2018 5:25 pm

Well, I woke up too late to call and speak with my gastroenterologist, unfortunately. I guess I needed the sleep after all this back and forth about what I have, and now the news about C. Difficile.

So, being unable to call him, I ignored my anxiety, said to hell with it and took the first Vancomycin. If I was misdiagnosed, I'll deal with that. If I wasn't, I don't need to be delaying treatment.

I do have a question you guys can maybe answer, as I had trouble finding it on the search. I have been taking Align since I got sick, before we knew about the C. Diff, and I have been asked by my GI to continue taking it with the Vanco. Do I need to take them separately, though? I normally took the Align when I first got up, but now I take the Vanco when I first get up. Planning to take the Vanco every four hours (except when I'm asleep, of course). Not sure if I can do both at once?

If it helps, I am (and pretty much always have been) on a nocturnal schedule. I'm one of those people who sleeps morning to early afternoon and is up from then until almost the morning.

Also, for my mom's peace of mind (she also has bad anxiety issues, like me), am I shedding spores everywhere I go? This is another thing I'm unclear on, how potentially infectious I may or may not be. We were only told by my GI's nurse, who woefully underinformed us about this and what could potentially go on. We got more information from the pharmacist, who thinks I must have a very mild case with my symptoms. He could be right, or maybe the doc is wrong, but I have to trust someone. So, I braved up and took the first pill.

Thanks all, and sorry for sounding like a nut. I'm normally a calm and even person, but health anxiety is an absolute beast once it breaks through your meds.

AllisS
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Re: Hi - Newly Diagnosed Today

Postby AllisS » Sat Mar 31, 2018 12:03 am

I can't answer your question about whether the Vanco and the probiotic need to be taken separately and if so what the interval should be, but I think others on the site may be able to. As to your question about whether you're "shedding spores everywhere": though the spores are always present in the environment, C. diff transmission is solely via the fecal-to-oral route, meaning someone must first touch a contaminated surface and then unwittingly introduce spores via the mouth or nose. It's often either recent or current antibiotic use that triggers this chain of events, since people generally aren't susceptible to the spores, as if they were 100 percent of the population would have active C. diff. Also, it's extremely rare to transmit C. diff within a household to others living there. Still, it's prudent to follow common-sense hygiene practices, as described earlier.
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

Kuro
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Re: Hi - Newly Diagnosed Today

Postby Kuro » Sat Mar 31, 2018 12:59 am

Thanks again, Allis.

That's the part which really puts my brain in knots about all this, one thing you mentioned. That common thread of antibiotic use being a trigger. I didn't use antibiotics at any time around when I began to get sick, nor was I otherwise ill. I'm not immune compromised. Haven't been in a hospital environment since my mom had a heart attack sometime over a year ago. My physical disability is a pain condition and has no impact on me in this respect. Being just barely 33, I don't think age would be a factor. It would seem more in my favor, even.

Just puzzles me how I could've ended up with this. My mom even asked when the nurse told her, and she just said, "Well, it's everywhere, and he tested positive in his stool sample."

Does this sometimes just happen? I feel fortunate that my parents are not showing signs and hope to keep it this way. Germicidal wipes ordered from Amazon should arrive Sunday, and that should hopefully make staying clean much less of a chore.

beth22
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Re: Hi - Newly Diagnosed Today

Postby beth22 » Sat Mar 31, 2018 2:08 am

Hi Kuro - First, yes, with Align you should space it apart from the vanco. Take it in between doses as the vanco will kill most of it. As far as getting c difficile without having taken antibiotics, unfortunately, that is becoming more and more common. But, c diff spores are out there in many places. Every time you go into a public restroom, your shoes probably pick them up. You touch your shoes, you walk with them into your house, etc. If a person has a compromised immune system, it can happen too. Antibiotics deplete your good flora that protects you from c difficile to an extent, but if you don't have good flora to begin with.... Taking medications like Prilosec for acid reflux have also been linked to c difficile.

Kuro
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Re: Hi - Newly Diagnosed Today

Postby Kuro » Sun Apr 01, 2018 5:03 am

Hi everyone,

As usual, thank you for all of your kind advice. We're still suffering a lot of anxiety and worry, both myself and as a family, but trying to move ahead as best we can. What else can we do, right? We started taking measures to make the house safer based upon advice from this site, and I would like to know if I've done a good job or could do more! I also have a few questions I'll follow with. First, what we've done:

1. We got Clorox germicidal bleach wipes from Amazon as advised on here. Wiped down the entire bathroom, as well as anything I regularly touch for the time being. Things will get even cleaner in my room on Monday. We're moving out furniture from my room that's too hard to clean, and I bought a new desk with no cubbyholes and other places for dust/dirt/spores to hide. Spend most of my time at the desk with the laptop, so that's good. It'll be very easy to wipe off with a germicidal and much easier to vacuum the room.

2. On the personal hygiene front, I am washing hands as much as possible and certainly every time I use the restroom. I use Aveeno bodywash to shower, which I know isn't exactly the most disinfectant thing in the world, but not much choice. I have a patch of neuropathic skin due to my pain-related disability and it reacts really painfully to ordinary soaps. Trimmed down my nails as short as is healthy. I also decided to completely take off my beard so nothing can get caught in it. Was hard to do, but I guess I don't look as bad as I thought I would! (Still able to crack a joke, at least)

3. I continue to take Align once a day, but I am thinking of switching to a brand an informed friend suggested, a strong Walgreen's brand with ten strains as opposed to Align's one. Seems like ten would have a better chance than one at surviving alongside the Vanco. It's also a bit cheaper than Align and you get a little bit more.

4. Lots of water drinking. I am never without a bottle of water. They're not so big that it's going overboard, but hopefully plenty enough.

I'm probably forgetting some changes we've made, because it has been such a blur since the C. Diff result came in from the test. We've largely had to educate ourselves! Anyway, the questions, and I'll try to keep concise...

1. Constipation. I have it, and I know why: a very poorly timed Upper GI x-ray with small bowel follow through. We found out about the C. Diff in the stool a day later, or I'd never have done it (but at least it helped allow him to rule out Crohn's). I'm not in any pain, and I *am* going, but only small amounts at a time. Passing gas, too, so I'm fairly confident it's not an actual blockage. I know it's the barium because it still has that pale white color. Any suggestions for what I could take or do to hopefully get things moving, or should I try not to worry as long as I keep passing it, even if a bit at a time? It's Easter weekend, so reaching my GI is impossible. Would just take a laxative, but I'm afraid of ruining my good flora right now.

2. Cleaning: how do you draw the line between cleaning enough and cleaning too much? Right now, we don't really have any guidelines (though I've seen people here say not to overdo it), so we've been doing as much as we can.

3. Is any harm likely to come to me if I somehow got prescribed Vanco due to the positive result, but only had C-Diff and not the actual toxins? I had to make a call over the holiday weekend, so I started the Vanco and am about to finish day two. Hard to believe my gastro would've made this error, as he's very, very experienced, but I have to ask.

4. Any tips in general for keeping your head on straight through all this? Health anxiety sucks, as I'm sure any sufferers know. I'm on anti-anxiety meds, but this situation is a bit overwhelming right now, and I can't help but think I'm doomed. I was reading on the constipation front here, came across something that said constipation with C-Diff could cause toxic megacolon and death, and my eyes about bugged out! I jump at everything right now.

Thanks everyone for your help. I am trying to condense my questions into single posts so as to not offend your preference for posting quantity. I know we can post as much as we like at first, but I don't want to disrespect the community.

Kuro
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Re: Hi - Newly Diagnosed Today

Postby Kuro » Tue Apr 03, 2018 6:29 pm

Spoke to my gastro today at length about my situation, for the first time since I learned about the positive test. Just thought it might be of interest for people to know that everything he said was (without my prompting) pretty much in agreement with things here. Wash hands aggressively, keep clean, bleach with germicidal wipes, take probiotics now and after antibiotics (he likes Align but also mentioned Florastor and VSL), and so on. They see C. Diff all the time and did not feel I was at a point where I needed to see an ID doctor. Just said I was likely to feel lousy for a while, basically, and that it wasn't cause to panic if I needed a second round of antibiotics after this first round. Overall, though, they think - without any promises - that my chances of recovery are excellent because I'm young and in good health.

I'm doing my best to not read the more negative stories about repeat relapses, people needing transplants, etc. It's just not where my head needs to be right now. I'm not having any D, no fever, no cramps, none of that. Got to keep up some positivity and hope that one round is all I'll need. The days of waiting and watching after the Vanco runs out will no doubt cause more anxiety than I have even now, which makes avoiding the negative and trying to stay calm/positive all the more important.

Bennet
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Re: Hi - Newly Diagnosed Today

Postby Bennet » Tue Apr 03, 2018 8:19 pm

Thank you for keeping us updated. I hope that you continue to feel well and the one round of Vancomycin will do the trick!
~Bennet


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