Stuck in hospital with infection with unknown source. Has anyone else had this?

[Bellabelloo]

I am in hospital with sepsis and large abdominal infection. On IV antibiotics for 2 weeks now. They can’t work out (despite many scans) where the infection is coming from. I’m so scared. Has anyone else experienced this?

I haven’t but a friend of mine had this. They never did work out where the infection came from but she was well after 3 weeks in hospital. It must be really scary but you are in the right place and I hope you feel better soon.

Dh had this. Initially an abscess and then pneumonia but despite multiple scans, xrays, a lumbar puncture, cultures and blood tests they never did identify what kept him so poorly for a month in icu. Trial and error of different abs resolved it eventually. Very scary but you are in the right place, hope you recover soon.

Thanks both. I am so scared, so good to hear positive stories.

My dbrother had this. It resolved with the right ABs. They had to swab him to find the right ones. It took four weeks but he's fine now. It's very frightening i know.

Thank you @BobMortimersSmileThey have sampled the infection snd tried all sorts of IV antibiotics but my CRP infection markets are still over 300. 0-5 is normal. 100+ is hospitalisation level.

Don't know if this is something you have had or can have, but a family member had a white blood cell nuclear medicine scan that found the location of hers. Wishing you well soon xx

Yes, my husband had sepsis of unknown origin with a similar CRP earlier this year. We never did find out what it was- one of the various IV ABx just eventually did the trick.

I’m sorry, it’s scary stuff. How are you feeing in yourself?

I had it too. I spent 3 weeks in hospital on IV antibiotics with CRP touching 400. The way it was explained to me was that by that point the infection has become systemic and is everywhere so it’s impossible to find the ‘source’. I presume they’re testing your CRP daily? It can take a couple of days to catch up so it might not start coming down until you’ve been feeling better for a couple of days. Try and go off how you’re feeling that the blood results.

Hope you’re feeling a lot better very soon. x

@MakepumpselevenThank you for your reply. I am feeling more human than last week, but very dizzy and drowsy and headachey.

@MrsPapillon Yes, they are testing it daily. It was 600 at it’s highest! But keeps going up and down around the 300 mark. I am feeling better than last week, but still nowhere near normal. Did they try lots of different antibiotics with you? And did it ever come back?

I know of someone misdiagnosed and it turned out to be an infected gall bladder.
Hope you have some answers soon OP. Bon courage.

Yes, I had this 20 years ago. 3 weeks in hospital, various scans but source never identified. Eventually one of the ABs they put me on worked and I was better within 2-3 days.

Scary at the time though. Hopefully it helps to hear others have been through it

@GooseCreekandtheRiver It really does. Thank you. X

I had that too a few years ago, sepsis unknown location of infection. Hugs

My dh had this.
He was sent home after visiting a & e with a CRP level of 300.
The next day he took himself off to another hospital and was admitted.
He was on 2 different antibiotic drips and 2 antibiotic tablets a day.
He had pleural effusion and pneumonia but his sepsis was of unknown origin.
It was a worrying few weeks.

It took him months to recover after he had been discharged, he tired very easily.

Hope you are well enough to get home soon.

Wow, that is high! It’s really positive that it’s coming down, albeit slowly. Yes, I had loads of antibiotics! I think it was the third or fourth different combination that worked in the end.

What shocked me was that I’d been seriously ill for weeks then one day I woke up feeling much better. I still felt crappy and washed out but not terribly ill. When the doctor came round and I told her I felt a lot better she said “That’s great, you can go home today then if you want”. It happened very suddenly.

I was really nervous because I hadn’t even had my bloods checked that day. They sent me home with two antibiotics and I was on them for another couple of months. The infection never returned, but it took about 3 months until I got my strength back completely.

Just keep resting, and force yourself to eat and drink even if you don’t feel like it. Hoping that today is your breakthrough day! x

I had similar which they eventually worked out was e.coli in my blood. I think it was referred to as a gram negative infection. It took quite a while to work out what was going on but once they did, started to recover quite quickly.

How are you doing today @Bellabelloo ?

@GooseCreekandtheRiverThanks for checking in. Bloods still haven’t come down. Waiting for scans, but will be a few days as bank holiday weekend. Desperate to get home. I have had some horrible experiences on the ward and it’s impossible to sleep.

God yes. Impossible to sleep in hospital even at the best of times. And ironically just at a time when your body would most benefit from sleep.

When I eventually got home I slept 20 hours per day for a week!

Let us know how you’re getting on once you get your results. Solidarity!

I had a drain put in today to drain the infection. Hopefully they will be able to work out what’s going on with the cytology.

Same, seems to be a lor more common than most think. Hope you're ok soon OP.

How are you doing, @Bellabelloo?
Do you have people to visit and bring you stuff?

My mum did several years ago she was quite poorly for weeks. Then took few to recover fully at home. And they just told her a couple of things it mostly likely was. But never a full explanation. Thankfully has not had it again.

I am finally home. I was in for almost a month. They have finally let me come home with a drain in and on oral
antibiotics, but only because I kicked up a massive fuss! My CRP has come down from 528 to 67. I couldn’t bear another night in hospital. I go back in on Wednesday for a scan and to find out next steps.