New member, currently treating first relapse

[lilkitty]

Hello! I’m a 26 year old female from Canada. I’ve had quite the traumatic health journey leading up to my c diff infection, and several rounds of antibiotics. Long story short — traumatic dental surgery, infection after, prescribed ciprofloxacin, discovered I’m severely allergic to it (lol! fun!), dentist injured my jaw at a post-op check up months later, face was unnaturally swollen, prescribed antibiotics again in case of infection because of the swelling and severe pain. And, here I am! Six months of pure hell, served up 2020 style. In much better spirits this time and the anxiety isn’t plaguing me like before.

My first episode started at the end of October. I thought I just had some post-antibiotic d and so didn’t think much of it until 9 days passed and no improvement. Took myself to ER when I started feeling faint and dizzy and like my body and brain would shut down every day around 3 pm. Tested positive and turns out it made me slightly anemic! Though the anemia has since resolved.

I responded very well to vanco which is what I was prescribed the first time. Took it 4x daily for two weeks and was having relatively normal BMs. I did however have very pronounced PI-IBS symptoms — extreme bloating and inappetance. I’m a petite human and I lost about 15-18 lbs between the dental surgery and the c diff and now probably weigh 100 lbs so I really can’t lose more. Food is also one of my greatest joys in life. I love sushi, spicy things, everything really. I was terribly depressed the first time around and the bloating and lack of appetite was terrible. I felt like my body was going to rip from being so bloated, but I’m so small someone might not even be able to tell how swollen my stomach was as a result. Anyway, that was a bit of a tangent, but I digress.

Four weeks to the date of finishing vanco I relapsed. I had 5 very watery Ds within a couple hours of waking up that morning and went straight back to the hospital because I wasn’t taking chances and wanted to be back on vancomycin right away. Additionally, I’ve had thrush for the past few months from the dental antibiotics and the c diff as well. A few days prior to the relapse I had taken fluconazole for the thrush but stopped because I felt a bit off (dizziness and heart palps). Four days later — relapse.

Tested positive for c diff in the hospital and am now finishing my vancomycin. I took it 4x a day for the first two weeks and am now tapering off. Originally it was supposed to be only for four weeks total but based on some discomfort I am experiencing my gastroenterologist has agreed to extend the taper. I’ve been taking nystatin for the thrush for two weeks and it hasn’t seemed to help much so I’m taking the fluconazole again since I was told being on vancomycin at the same time would protect me from the c diff bacteria overgrowing. I take Bio-K probiotics which are apparently clinically proven to help c diff specifically as well as Florastor.

I know everyone is different and all things considered I seem to be lucky despite having already relapsed once. I’m obviously terrified to relapse again — I think the fluconazole caused it (even though antifungals aren’t true antibiotics). They still alter your gut flora and my gut flora is obviously not strong enough and it needs to be strong to fight this off.

I am finding eating so difficult. I work full time and live alone. Where I live, we’re in lockdown but single occupants can group with one other households. I would love to see my grandparents as they’re the only close family I have really near me but I’m terrified of infecting them. When can I see them again?

I’m trying to get vegetables and stuff like that in me with cold pressed juices since I’m too tired to cook extensively and don’t often have the time with my full time job. It also is a lot easier to digest and I can get leafy greens in that way.

Do people get to eat normal things again? I know that is an incredibly loaded question and the answer is “it depends,” but will I be able to eat raw vegetables on a sandwich? Can I eat spicy dumplings again? If you knew me in real life you would know they’re basically my top hobby (consuming them, that is).

I’ve been exercising twice a week and that’s been going okay. So far I haven’t seemed to lose more weight per se but I haven’t gained any back. I basically live off of ensures and breads.

I can eat some dairy, chocolate seems okay in small quantities. I have had shrimp fried rice from a Chinese restaurant recently and that was okay. I had a pork sandwich with some tomatoes on it recently and that caused major pain in my organs so won’t be trying that again. Cooked tomatoes are fine though. The only raw fruit I eat are avocados and bananas.

Also the intermittent tinnitus is fucking horrible. Who asked for that? I did not ask for that. Anyway, I’m not specifically sure what I’m asking for aside from

- can I see my grandparents soon
- can I eat a good food one day (I’ve been reading many posts so I know this is a maybe but tell me again anyway please lol)
- does the risk of relapse decrease over time
- does antibiotic use (from the list of safe ones of course) become less dangerous over time

I guess I do know what I’m specifically asking. I’m in a funny mood and I haven’t even yet indulged in my evening cannabis. On that note, I shall see to that promptly. Nice to meet you!

[beth22]

Hi lilkitty and welcome to the site. You can find more information for new posters in the first forum.

As far as seeing your grandparents, I would be more concerned about exposing them to Covid than c difficile. It is difficult to pass c difficile to someone else. It requires a fecal to oral route. So, if you are very concerned, don't use their bathroom while visiting. But, the entire time I had c difficile, and I had many relapses, my husband used my bathroom and we slept in the same bed and he never got it. I also used a shared bathroom at work and no one got sick. Just make sure to wash your hands well.

As far as eating normally again - like you said, it depends. For some people it is easier than others. I was not one of the lucky ones. You are lucky you can still eat some dairy. Introduce new foods slowly, one at a time.

The risk of relapse does decrease over time as your flora builds up

Antibiotics can always cause c diff, but many can tolerate them afterwards. My mother had c difficile when she was in her late 80s and she took antibiotics afterwards on several occasions without a relapse. She also took a daily probiotic after her bouts with c difficile. I'm not sure if that helped, but it sure didn't hurt. I have also taken antibiotics without a relapse. Obviously there are some that are worse than others - the more broad spectrum ones. Always make sure you really need an antibiotic and discuss your options with your doctor.

I hope you start feeling better soon. I had a lot of PI-IBS symptoms too - the bloating, etc. and it took me a long time to gain back the weight that I lost.

[lilkitty]

Thanks for the reply, Beth. Agreed re: COVID, however, I haven’t seen anyone in at least two months and only really run errands occasionally. I also would wear a mask 100% of the time while at their place and haven’t hugged anyone in many months. I’m pretty covid conscious though I do know there’s always a chance.

How long did you struggle with your PI-IBS? How are you feeling now (assuming it’s been a while since the infection)?

[beth22]

I had PI-IBS for many years and still can't eat certain things, but I had many, many relapses. I think the vanco hurt me more than the c diff. I only got well with FMT. I also got SIBO and that accounts for most of the IBS symptoms.