Newly diagnosed - how do you function daily?

[13kwoods]

Hello - I've recently been diagnosed with C Diff. I've been working from home for the last 3 months (off and on) while doctors have tried diagnosing me.
Started off with H.Pylori in November and diagnosed last week 2/23/18 with C Diff.

I'm lucky to work at a company that provided me the ability to work from home so I could go to all of these doctors appointments.
However, I have to go back to work eventually.
I'm on day 4 of a 10 day treatment of Flagyl.

I want to go back to work but am concerned about the bloating, nausea, "D", rapid heart rate, cramping, etc...that seem to accompany this.
Working from home, I can lay down when I have a fainting/dizzy spell or when the nausea gets too much, or the "D" has exhausted me.

What are some tips for going back into the world?

My mental state is not cool and I need some sure fire techniques to put the mental, physical, and emotional in check.

Thank you for your input.

[MKW]

Hi, you are very lucky to have been able to work from home during this time! For starters, hopefully the Flagyl works and by the end of the round most of your symptoms are gone. How long does your doctor speculate you have had active c Diff?
I can tell you being at work is a great distraction from worrying. I had c Diff four times, and have had ibs / SIBO problems since my FMT last March.
The bleach wipes sold on Amazon that are 10% bleach are great to carry in your purse if you feel you need to clean if you have a BM at work. Also make sure you are prepared to bring foods with you that you can tolerate, since most people can’t just go back to a normal diet right away.

[13kwoods]

MKW wrote:

> The bleach wipes sold on Amazon that are 10% bleach are great to carry in
> your purse if you feel you need to clean if you have a BM at work. Also
> make sure you are prepared to bring foods with you that you can tolerate,
> since most people can’t just go back to a normal diet right away.

This is a great tip! When I was diagnosed i was pretty much sent on my way. I wasn't told about the spores, cleaning common areas, what to eat, or even what C Diff was. This site has been incredibly educational.
I will definitely get wipes to keep in my purse. Sharing isn't caring with C Diff, and one of my fears has been spreading it in the office.
My diet so far has consisted of Boost, yogurt, mashed potatoes, and occasionally rice. Man, what I'd give for a burger and pizza!

Doc isn't sure how long I had it but based on my intuition I'd say I acquired it shortly after the treatment for H.Pylori. I was lucky enough to go from a round of treatment for that, straight into a UTI, which means I was on antibiotics for over a month. My thought is all the antibiotics stripped my system of the good bacteria. My immune system was already compromised so the bad bacteria was left with free reign.
I never reacted well to antibiotics to begin with, thanks to over prescriptions as a kid (chronic ear infections), so it took a while for the docs to figure out I had C Diff. Actually tested negative at first

I've been reading on others posts about adding active cultures to my diet. Aside from yogurt, what exactly is that? Would it be helpful to try CBD oil or perhaps sciliac (spelling?)
The Flagyl seems to make me sick. If there is something I can take to help with the symptoms of the Flagyl I'd be willing to try it.
Doc just gave me xanax to help with my heart palpitations, which I understand increased heart rate is a symptom of the D Diff.

thank you so much for your insight.

[MKW]

This board is a GREAT source of information. I don't know what I would have done without it. My practitioners told me next to nothing about C Diff being contagious, home care, I learned about the Vanco pulse/taper regimen on here, everything about FMT's, what to expect with food intolerances, etc. And of course lots of emotional support and just people sharing their own experiences and knowledge from what they have been through.
cdifffoundation.org has good home care tips, and I buy boxes of nitrile gloves at Walmart $8 for 100. They are good for cleaning and to use for wiping so you aren't having to wash your hands to the point of skin breakdown.
Flagyl has a lot of side effects for many people. Vanco was much better for me. But... if you are still having watery D make sure you report that.
I have talked to someone on here before that got food poisoning, then H pylori, then SIBO, then C Diff. I had C Diff, now have SIBO. ugh. Once you mess up your gut microbiome it can be a long path back to health for some of us.
"Cultures" means fermented foods. A lot of people drink Kefir, which is like a liquid yogurt of sorts. The GI Doc who did my FMT recommends it over any probiotics (of course all docs have varying opinions). Lifeway Kefir is an affordable brand. Even though it is a dairy product it is mostly lactose free. It supposedly has 15 billion CFU's per cup and 12 strains of bacteria. My doc explained to me that what you want to go for is bacterial diversity. Florastor is good to take while on antibiotics because it is a yeast, so is not killed off. But once you are off the flagyl, eating/drinking fermented foods, and taking multistrain probiotics can potentially help prevent C Diff recurrence by keeping the colon populated with harmless bacteria while your natural microbiome builds back up. It's not proven, but it's a won't hurt definitely may help strategy.
I have heard CBD oil is beneficial for people with IBS/IBD symptoms. However, you need to think in terms of healing your gut microbiome in particular, and I do not know anything about CBD when it comes to that. Your best bet it to read, read, read, and learn as much as you can about C Diff.
And, I have seen many posters complain about fast heart rate accompanying C Diff. You are lucky your doctor was willing to address that issue and prescribe something that will help. Also, of course there is a major connection between the gut and brain, so many of us end up with anxiety too!

[13kwoods]

Thank you MKW!!!

As far as I'm concerned, I'm a petri dish anyways, might as well experiment.
My GP has set me up with a psychiatrist. I was reluctant at first but again, might as well.

Between the pain of eating (what's that about? the food hasn't even had a chance to make it past my stomach!?), nausea, vomiting (some times), off and on fever, and overall feeling of despair, not to mention the painful race track in my gut speeding its way to the exit, well I just didn't know where to turn.

This group and reading other peoples stories makes me feel like I'm not crazy!

I'm ordering all the items you've mentioned and will call my GI for more advice, as well.

You know what gets me is all these people who say, "wow, I wish I could lose weight like that." It so upsetting. I try to explain to them, "No you don't!" but they really just don't get it.
I was thinking this morning there should be more awareness of C Diff. Then I thought, we should do a 5K for awareness. Then I thought, well, there'd better be port-a-potties everywhere cause we won't make a 5 K without a few pit stops!

Thanks for your advice and kind words MKW

[ResearchGrandma]

Flagyl has awful side effects for many people, but since it is cheap doctors often prescribe it first. Dizziness is a common side effect. You may feel better if you can get switched to either vancomycin or difficid (vancomcyin is available as generic; difficid has no generic, but some on this site have reported than manufacturer has a financial assistance program.

[Megs717]

I have my fingers crossed that Flagyl works for you! I am a 37 year old healthy female that ended up with C Diff from antibiotics. I took Flagyl and it was a miserable two weeks. That medication made me feel like garbage. I felt sick and exhausted. 3 days after treatment, I started to feel poorly. I ended up at the hospital with a high white blood cell count, and so sick I couldn't function. From there, I was given Vanco. I am on day 5 of Vanco and it's like night and day from Flagyl. I feel completely normal. I am eating completely normal. I don't even notice that I am on a medication! The only reminder I have is the constant anxiety that it will return when I am done. My GI said she'll do a taper with me if that makes me more comfortable. I am not an expert, but from my own experience, I'll say this... If Flagyl is making you feel that awful, see if you can be switched to Vanco. My GI informed me their now saying not even to start with Flagyl. The other thing I'd say is if you finish your medicine and you feel it's not right, it probably isn't. I waited 2 days with that little voice saying it wasn't gone, and in turn it made my situation worse. Hang in there, I am suffering with you as we speak!

[Megs717]

> You know what gets me is all these people who say, "wow, I wish I
> could lose weight like that." It so upsetting. I try to explain to
> them, "No you don't!" but they really just don't get it.

I got that today at work! I wouldn't wish this on my worst enemy! Also, as I was being checked in at the hospital, I explained to the admin and triage nurse that I had C Diff (when they asked why I was being seen) the nurse said "oh, it's just some diarrhea" and rolled her eyes!

[13kwoods]

Thanks you everyone for your advice and kind words. I feel less like a feather in the wind now hearing your words.

==Is there anything I can do at night that might help me with my mornings?
Mornings are the toughest. I feel weak and of course there's the BM bouts. I've tried eating mashed potatoes before bed as I've read the starch helps in general, but this did not help. I also have tried yogurt first thing in the a.m. but that has been hit and miss. No consistency.

=Megs17 - for a nurse not to take this as seriously as it is tells me they are not educated properly. I'm sorry you had to hear that. It is so disheartening to hear a medical professional said this at all, but in the presence of a patient who is suffering just makes it even worse.

I have 2 more days on Flagyl. I am hopeful the treatment has worked but I'm also prepared for the possibility that it did not. I too have read the reports that Flagyl is no longer recommended. The report I found came out one week prior to my diagnosis so I'm giving my GI the benefit of the doubt. However, I will ask for Vanco or Fidaxomicin if my cultures show C Diff is still in my system.

=ResearchGrandma/Megs17/MKW - have any of you heard anything about Fidaxomicin? I read it actually kills the C Diff bacteria instead of just suppressing it, which is what Flagyl and Vanco do.

=MKW - I bought the Kefir and it felt weird for the first half hour, sort of like a buzz. But after the half hour I felt really good. Good enough to eat some fish and brown rice. I'm starting off slowly as I've read it should be introduced incrementally especially during a C Diff occurrence. I also bought the Florastor and took it at night before bed. I had night sweats, but my husband tells me I've been sweating at night for the last 3 months, so possibly not a side effect. This morning I had several BMs but again, that seems to be par for the course with C Diff and with the Flagyl, so possibly not related to the Florastor.
I also bought some Kombucha but couldn't drink it because, to my surprise, it has alchohol, which I can't have any of while taking Flagyl. I will try later for the fermentation aspects, though and I read that it helps with UTI's, which in reading a lot of other posters notes, seems to be something correlated with D Diff sufferers.
Clorox wipes came in the mail as well which has helped with cleaning. Taking these steps has made me feel like I am "doing something" instead of a victim of my circumstances.
I have bought a bunch of organic groceries that claim NOT to have any antibiotics. I read that antibiotics are in so many common, everyday items like ibuprofen and allergy meds to beef and eggs. Through this cdiffdiscuss.org support group I found a doctor's board and he explained how we are being over exposed to antibiotics daily and we need to introduce dirt back into our lives via growing our own food. This "dirt" has the natural bacteria we need to keep our guts healthy.
It's a ways off as I live in Ohio, but as soon as the weather turns I'm planting a garden!!!

[shooten]

Flagyl was horrible for me, I did two runs of it and both were awful. Vanco seems to have done the trick. I know a lot of people on here take Florastor and the probiotic VSL #3. I used both of those plus some others. Definitely find what foods agree with you and take them to work. I had a number of different snacks that I kept at work so I would always have something I could eat that I knew wouldn't cause me any issues. The hardest part is to try not to think about it. I know whenever I would get fixated on the pain it would just make everything worse so keeping busy is good and having a hobby you enjoy can be very helpful. One of the most calming things for me was reading this forum and knowing I am not alone. Hopefully your one round of Flagyl will kick it. Best of luck.

[13kwoods]

shooten wrote:
> Flagyl was horrible for me, I did two runs of it and both were awful. Vanco
> seems to have done the trick. I know a lot of people on here take Florastor
> and the probiotic VSL #3. I used both of those plus some others. Definitely
> find what foods agree with you and take them to work. I had a number of
> different snacks that I kept at work so I would always have something I
> could eat that I knew wouldn't cause me any issues. The hardest part is to
> try not to think about it. I know whenever I would get fixated on the pain
> it would just make everything worse so keeping busy is good and having a
> hobby you enjoy can be very helpful. One of the most calming things for me
> was reading this forum and knowing I am not alone. Hopefully your one round
> of Flagyl will kick it. Best of luck.


Thank you Shooten.
I'm figuring out what it is I can eat right now. I will definitely have to pack my lunch for a while.
I'll look up the VSL#3 for sure.
This site has been a God send. I seriously was at the end of my rope.
Everyone has been amazing!

[Ril]

This site is a great support as you all can see.
Nobody should have been prescribed a second course of Flagyl after failing the first but you can’t go back.
We have all been there, feeling crummy, having no appetite, etc etc, but you really will get better. We all do.
Eating bland is best. Grilled poultry, rice, toast, eggs, avocado, pasta, oatmeal, soups with well cooked veggies are things that people have tolerated well.

Please don’t use the quote feature. It takes up a lot of room.
Good luck and good recovery to all.
Rita

[Megs717]

13k- Hi there! To answer your earlier question, yes I'd heard of Dificid. I was put on Vanco because when I relapsed, I was in the ER. I've since been seen by a local GI, and I'll be heading to Mayo to see someone by the name of Dr. Khanna next Tuesday. From what I understand, he's an incredibly well respected doctor, and very knowledgeable in C Diff. My regular dose of Vanco ends on Sunday, and I am to start a taper - but I'll work with him to determine what's best. I was wondering if he'd switch me? Not sure, but I'll have plenty of things to ask him when I am there. I hope you're feeling better and that you have better luck w/Flagyl than I did. If I never see that stuff again, it would be too soon!

[13kwoods]

Thank you everybody for your feedback and candidness.

I've muscled through the Flagyl and am now home-treating with probiotics.
They seem to help but I am still feeling the anxiousness and fast heart rate.
I spoke to my GI and he said fast heart rate due to CDiff is not common but didn't dismiss it.

In my own research I found that fast heart rate is a symptom listed on the Mayo Clinics site for CDiff.
Now that I'm off the Flagyl I'm wondering if this increased heart rate will continue for life or it will correct itself as my gut heals.

Further research has shown that the anxiety can absolutely be related to poor gut health, since most of the chemicals are made in our gut, like serotonin and adrenaline, for instance. Again, hoping the anxiety relieves on its own as my gut heals. I don't want to be an anti-anxiety meds for the rest of my life!!!

I read other posters state that they've been able to travel and take vacations and enjoy life. So I know there's hope!

[shooten]

I do know for me, when I had c diff my blood pressure went from 120/80 to 144/95. Whenever I relapsed I would check my blood pressure and it always increased.