Follow Up - C Diff - It's Back (uugghhh!)

[katidid]

Hello lovlies,

So the first treatment to get rid of this oh-so-fun super bug failed. They put me on another course of Vanco this time with an additional 2 weeks. I think this tallies to 10 weeks on hardcore antibiotics (luckily gut specific, hate the body wide stuff).

Unfortunately, this has put me in a bit of a *painful* pickle: they stopped all my immune suppressants as that was what caused the C Diff to erupt and move so fast into kill me mode. Sorry to be blunt!

As of two weeks ago, I could really start to feel the effects of no immune therapy. While I am always in pain, I felt it was "managed" before this started. Now everything is on fire. Both the Lupus and the PsA are in full blown mode. I'm trying to keep looking forward but the joint pain, swelling, aches, rash, fatigue, breathlessness and fog are rapidly getting worse every day. They gave me some additional meds to help fight the pain and sleep, but it still sucks to wake up to what I thought we had gotten under control over the past two years. I'm literally back to sqaure one...

It's such a catch 22 - I go off the Vanco and start my immune therapies back up and risk pretty immediate death (I had reached the intestinal wall tearing phase) or I only treat the infection and let the AI kiddos run wild and just try and smile through the pain.

I was particularly bummed when I looked down and all of my lower distal joints and tendons were red, swollen and the bones in my feet are moving again (PsA). My knees are also collapsing - the ligaments and tendons are just being hammered by the Lupus/PsA combo.

Back to the 30 min makeup routine to cover up the butterfly...

Sorry to complain. Just so frustrated to be in this position.

[whisperit]

Sheesh, if all you are is frustrated, you must be the most stoical soul on earth - it must be a total nightmare?! Wish I had some ideas to help out. My latest soother is to have ambient birdsong off youtube playing all day long, in the hope that this will have subconscious healing effect somehow. But maybe you'd prefer death metal.

Anyhow, wishing the best for you and death to all C difficile bugs - do keep in touch here whenever you feel up to it x

[eekt]

Please keep 'complaining' Katidid, what a horror situation to be in...if writing helps get shot of some of the frustration, keep typing! We're all backing you! 😚 mo xxx

[rivershark]

Have you been offered a fecal transplant ? If not ask your doctor about it. It cures c diff and much better than anti biotics which ruin the gut microbiome and health. My health issues started after a course of doxycycline

[katidid in reply to rivershark]

Yes, it's been brought up but you have to qualify, meaning you've failed three or more rounds of the antibiotic. Don't get me wrong, if I could live off Vanco I would. All the symptoms completely gone within 6 days of starting each course. As far as the transplant, the only issue is that current data shows it's really a 50/50 shot and highly specific to you individual gut flora. Some report wonderful success rates, others a total failure. But, you're correct for chronic C Diff it is the only final option sans partial colon surgery which has way to high of a mortality rate for my tastes. Thanks for the info and support. Hopefully awareness of long term infections rises over time so none of us have to go through these things.

[katidid in reply to rivershark]

Hey there ! Was at the lupus conference this past Saturday and bacterial infections and up. They talked about the transplants and how scientists are getting better and better at it. So, thanks for your post. I will def be asking my doctor about this! Fingers crossed

[rivershark]

That’s really interesting

The gut microbiome seems to be researched a lot more these days.

Definitely worth asking about them especially for stubborn c diff

Take care and keep us posted xx