e-coli infection and leaky gut

Hi all. I'm trying to understand what is going on: I'm not looking for medical advice (which we avoid doing here anyway) but trying to wrap my head around the logic (?) and structure of what is happening to me. So if anyone can give me the Enid Blyton version, I'd be grateful.

I have been taken off to hospital four times: on the first two occasions there was an e-coli infection in my bloodstream (sepsis), but on the second two I presume I caught it a bit earlier (although it didn't feel much like it). On the first two occasions I was treated with a short course of intravenous antibiotics (5 days) then sent home, and on the third, two days of IV then a couple of weeks of an oral antibiotic (to continue at home). I didn't last the course, because I was back inside again after 5 days. This last time I was on IV for 2 days, then on two antibiotics (cyprofloxacin and metronidazole for 3 weeks), due to run out in a couple of days. I've lasted 11 days this time.

I had an ultrasound scan that showed cysts on my liver, and a subsequent MRI scan with marker dye suggested they could be abscesses (could be?). I'm due to have another MRI scan on Thursday. A scan back in 2016 also showed small "simple" cysts.

So here come the questions.

Presumably if the cysts in the liver are abscesses, they are capturing the e-coli from elsewhere. Could they have been doing this back in 2016 or longer?

One possible route is from the gut via some form of fissure. They are intending to carry out a colonoscopy.

Back in 2005 I went on steroids to deal with polymyalgic rheumatica, but since then have been unable to get the dose below 10 mg without problems (next paragraph).

Way back in 1999 I had major sinus surgery, infection, which set up my ME. This was to sort out sinus and neck pains on both sides from 1997. Since then my right sinus area around my eye, along my teeth, and down the back of my neck gives me pain if I experience certain triggers, and also whenever I drop my steroid dose below 10mg. Could that be a source? Are the steroids dampening down an inflammation there? If so, why do the doctors always dismiss it, and suggest that I should see a rheumatologist (linking it to the polymyalgic rheumatica, and giant cell arteritis) despite the pains predating the pmr by 8 years?

They were also looking at the heart as a possible source, but after two ultrasounds, dismissed that idea.

I'm beginning to climb out of the pit of brainfog, which is one reason why I'm getting confused. Seeing around 30 different doctors over the 4 trips, all asking more or less the same thing, all speculating various procedures and treatments, then disappearing not to be seen again, didn't help.

Thanks in anticipation.

Is there anything more I need to find out about?

 

Are you diabetic , @Graham ?

 

The first thing I would say is that someone who has been on 10mg prednisolone daily for ten years at age 70 is at significant risk of getting gram negative (E. coli) septicaemia without any other particular explanation.

Assuming that the relapses were associated with fever and rise in CRP level there must have been some persistent source of bacteria which might be an abscess but might be something more subtle like a partial bile duct obstruction. It is very unlikely that sinuses would be relevant I think. In general e coli derive from gut.

In the presence of a persistent source my policy would have been to treat with antibiotic for a minimum of a month and probably six weeks in this context.

Important information would be the CRP profile over the period and the assessment of the the antibiotic sensitivities of the e coli found.

Most cystic structures on scans in liver are cysts. A liver cyst might perhaps be colonised by e coli but that would happen once and the subsequent problem would be clearing it. My understanding is the liver abscesses mostly form without needing a cyst to be there already. If you are not on antibiotics and you have e coli in a space in the liver you are going to be very unwell so I don't think there is any likelihood of the e coli having been there for a long time.

My experience of this sort of situation has been that often you never know where the persistent focus is. The key thing is to treat with antibiotic for long enough and monitor CRP carefully. It is still worth looking for a focus though.

Although the situation seems unsatisfactory and puzzling it is a common one and is dealt with pragmatically.
I think there has been a problem in recent years, possibly aggravated by the Covid situation, in that long term care under a single physician is much less the practice. In the old days if a patient came in under me they stayed under me as inpatient and outpatient for ever. That does not apply now. There are advantages in the new system because senior physicians are much more directly involved in acute care. In the old days most emergency work was delegated to trainees. Once effective treatments became available it became obvious that this was not justifiable. But the downside was that everything is now done on a rota basis.

 

By this do you mean lack of continuity is an issue?

 

Yes, particularly in sorting out unresolved problems like this.

 

Thanks for such a clear explanation. I wish I had had just one or two doctors, who could have seen me buckling under the system and explained it to me in better patches. It would have been enough just to have one "junior" doctor overseeing my notes. (Every change of dispensing nurse meant I had to explain that the steroids they were giving me had lactose in them, and that I had lactose free ones in the locker, but no-one updated the notes.)

I was only told the result of one blood test, as an outpatient after the third 'visit": the CRP was 30, and I was half way through the course of antibiotics. He didn't seem worried, but it was only a couple of days after that that I went back in.

In my discharge notes they said that the e-coli detected were sensitive to tazocin (which I had as IV), coamaxilov and ciprofloxacin, so they clearly gave me the right antibiotics (but not enough). It also reported a clear gall bladder and biliary tree.

My family did look online, and read the advice to follow with a long course of antibiotics, but we had to argue to extend the present course to three weeks to take me up to the MRI scan.

I realize that things like this are seldom going to be clear-cut, so your clear overview helps a lot. It would be daft at my age in particular to expect everything to be plain sailing!

It's frustrating when all the medical and ancillary staff are so caring, thoughtful and professional, but the constant change of personnel just mangles my brain.

Muchly gratitudinouses.

 

Sorry, forgot to answer. No, not at all. But my diet is pretty good anyway.

I do keep trying to come off the steroids, but it's such a poor quality of life with constant head pain.

 

Hi @Graham, just in case you hadn't seen it. Have copied this from @Lisa108 #14, posted when you'd just gone in for your last hospital visit..

Dear @Graham, I hope you'll recover soon!

Your story reminded me of the current episode of a German TV series called "Abenteuer Diagnose" (diagnosis adventure?):
A small hole in the stomach (which had already nearly healed by the time they did a gastroscopy) had let to sepsis, liver abscess, and inflamed gall bladder in a patient.

The root cause (for the inflammation and perforation of the stomach lining) was that the patient had NOT been prescribed gastric acid inhibitors although he took a lot of pain killers and steroids for a rheumatic disease.

So in that case not a leaky gut, but a leaky stomach...

 

My partner had, a few years ago now, a ruptured appendix which the hospital failed to identify (long story so won’t interrupt this thread!). A friend and I suspected that this was the case, and persuaded the GP to give antibiotics - after a 10 day course, he was somewhat better, and I argued strongly that he should have the same again... which the obliging GP prescribed. 20 days of the antibiotic and he is still here to tell the tale.

It seems that doctors are often reluctant to prescribe a long course of antibiotic. But sometimes that is what is needed to sort the problem.

 

Do you know your CRP goes up if you reduce steroids (poor to the current episode that is)?
There is a need for an alternative anti-inflammatory to steroid for PMR/GCA. I tried rituximab and it probably works but the patient I treated developed a lung complication. Another obvious option would be tocilizumab, or anti-IL6. However, my colleague Patricia Woo, who was the expert on this, tried it on her own polymyalgia and barely survived a disastrous adverse reaction.

Not having diabetes is a big plus. Diabetes can lead to a 'blind spot' in the immune system for certain bacteria and if that happens it is hard to get a resolution to the problem. Steroids make people susceptible but with antibiotics the immune system can cope.

 

Back again, after a fifth trip in to hospital. I just can't get my head around their logic. They don't like prescribing antibiotics for a longer spell, so instead I have had antibiotics for about 8 weeks now in total, but in 5 short spells, each leaving a gap when the infection returns. To my mind that encourages antibiotic resistance.

Anyway, on the fourth admission they prescribed two antibiotics to run for 2 weeks: we persuaded them to run it for 3. But there was no follow-up to check on bloods etc. to determine whether the course had been long enough.

Clearly the 3 week spell wasn't enough because 10 days after the antibiotics finished (a period which included my prostate rebelling, and having a catheter fitted), the infection returned. So, in a mysterious feat of logic, after this fifth episode, they decide to send me home with a two-week run of the same antibiotics, and no check on bloods etc. Obviously if three weeks do not work, a two week spell will do the trick. Einstein's definition of insanity?

I challenge it in the morning, the (junior) doctor accepts my argument and goes off to chase it all up, promising to return. Then nothing until 5:00 when the pharmacist appears to arrange my drugs to take home – a 2 week course. At 8:00 I'm told I am discharged. No sign of any doctor.

So frustrating. My conclusion is that I will have to try to co-opt my friendly, reasonable and supportive GP into carrying out some blood tests and continuing with the antibiotics until things settle down.

I'm afraid this is just a rant. And as for them understanding, or even trying to accommodate ME, well that's just fantasy. And yet the weird thing is that, individually, each nurse and each doctor was caring and thorough. I think the problem lies entirely with the way the department is led: it isn't a co-ordinated team, with someone taking an overview and following things through – it is a collection of individuals who get together to discuss ideas, but with no-one personally responsible.

 

I am sorry to hear that the problem is not resolving, Graham. Your assessment the situation sounds fair.
In my view you need CRP measurements twice weekly until you have a normal one (less than 3mg/100ml) and then weekly until you have three normal ones. Only then would I recommend stopping antibiotics. There may be an argument for remaining on one antibiotic for a much longer period if no removable cause for the recurrent infection can be found.

If your GP can take charge of the situation presumably they can continue to prescribe. You obviously need proactive follow up by somebody for at least 6 months.

 

Thanks @Trish, @NelliePledge and @Jonathan Edwards . It's nice to know that I am not going insane. I kept asking about my blood results, and each doctor would promise to find out, then I'd not see them again. I do know that my CRP at one time prior to discharge was around 30! I did ask for a copy of the results, but again, that disappeared into the ether.

As an example of strange logic, one doctor was concerned about me being on 10 mg of prednisolone for so long (understandably so), and wanted to prescribe Alendronic Acid. I asked if he had consulted my DEXA scans (one in 2006 showed no spine problem, and a hip T-score of 1.5: one in 20016 showed exactly the same. Ten years of steroids had made no difference, and when I fractured my hip in 2009, I healed with no problem). He hadn't. I also explained that the situation with steroids and ME was complex: it doesn't seem to be clear whether certain subgroups do need a boost. But when I was discharged, there was a set of Alendronic Acid tablets.

Following on from that, a number of other doctors all thought that I should see a rheumatologist because coming off the steroids gives me terrible sinus type pains around my right eye, along my teeth and down my neck. It's a shame you are retired, Jon!

As to a consultant being "in charge", I think that is at the root of the problem. Mind you, my experience pales into insignificance with a local friend with ME who went in with a suspected bleed on the brain and needed a lumbar puncture.

It gets to the stage where we wonder about moving back to Wiltshire where we still have some roots (after 36 years here) just to get to a decent hospital!

My GP was actually once a registrar in gastroenterology. He left to become a GP I gather because he just couldn't stand the atmosphere any more.

Thanks for tolerating my rants!

 

@Graham,

I think you are entitled to insist on a print out of all your CRP results in the last 6 months. Managing your problem without that is not sensible. Your GP may have the results but I doubt they do, or at least not in a readable form. Patients are entitled to their results. I would even go as far as suggesting a little bit of pressure applying like saying that you have a very good friend who is a professor of rheumatology at UCL who thinks it essential. I also would agree that you probably should have regular follow up with a rheumatologist if you are on 10mg prednisolone for presumptive polymyalgia/temporal arteritis. Where are you living if not Wiltshire?

I am not supposed to be giving medical advice and I don't think I actually have but anyway I think it is appropriate for me to give advice in terms of standing up for the right to adequate long term follow up.

 

Thanks @Jonathan Edwards . I'm not taking it as medical advice, more confirmation that my reasoning is not utterly foolish, and, as you say, giving me advice in terms of my rights. I know I am entitled to a printout of my blood results: I have a geeky interest in understanding them, and my GP always is happy to comply. It helps me get my mind around the more biomedical aspects of ME research. Getting them from the hospital on the other hand may be a protracted business but I am not going to give up!

The steroid story is a long one, but the PMR went a long time ago (a short burst in 2005): the sinus problems predated that (1997). The whole sinus/ME/PMR story is a tangled tale. It's more that dropping much below 8 mg lets the "sinus" problem rear its ugly head. I'm not worried about people knowing the details, but this isn't a site for medical problems in that sense, and I don't want to transgress. It's simply that I am very, very grateful to get confirmation that what seems sensible and appropriate to me, is actually sensible and appropriate.

We do know a good rheumatologist in the area, sympathetic to ME, so I may pursue that privately in the future.

The other aspect is to draw attention to the fact that there are hospitals who still treat their ME patients as though they are just a bit fatigued, and that CBT would sort them out. I think in this case it is a reflection of the unit's general attitude towards patients and towards their "standard procedures". The report from the Quality Care Commission on the hospital in general isn't exactly wonderful.

More widely, I think we have "won" the battle with PACE and CBT, even though it is taking quite a while and a lot of effort to get the armistice sorted out: our problem is to update medical training. I am a patient member of the Sussex University Patient Educators Group, which aims to involve patients in training the next generation of doctors, and am intending (when I pick up) to collate details of all the other groups so that they can work together and so that we can introduce them to materials like those produced by Natalie Boulton. (Naturally, this is with the approval of the person in charge of the Sussex group, and with Natalie). But a bigger problem will be to update present medical staff.


I'm living in Crowborough, which is on the border of East Sussex and Tunbridge Wells (our local hospital). It's Winnie-the-Pooh country, which may explain a lot. I'm actually within (healthy) walking distance of Ashdown Forest, which is brilliant, and also the town centre, which is handy.

 

So sorry to hear that the docs still haven’t sorted the problem out @Graham - it must feel like you are stuck in a hamster wheel of ineptitude. You would think that they might see that 5 trips to the hospital necessitates a change of plan! I hope you can get your GP to see sense and give you sufficient treatment and monitoring.
Here in NZ, I can access my test results online - its very useful. It would make life much easier for you if you could monitor your CRP because then you would have a chance to stay a step ahead. I do hope you can get this sorted once and for all. Keeping my fingers and toes crossed for you!

 

Well your thoughts expressed here seem very sensible (for once!).

Words not coming easily for me at the moment, so just big hugs and hope you can ‘guide’ your medical experts in the right direction to achieve a more peaceful and healthier rest of the year. We are all rooting for you.

 

I'm so sorry to hear about your nightmare, Graham. I hope you get to the bottom of this. It sounds like continuity of care in your area leaves much to be desired.