Dysentery anyone?? 😳: Sorry if this is a bit too... - LUPUS UK

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Dysentery anyone?? 😳

Mifford profile image
Mifford
β€’17 Replies

Sorry if this is a bit too much info but interested to see if anyone else has had similar and can give some advice. Wednesday night I went up to bed with my fiancΓ© and just before he fell asleep I mentioned that I suddenly felt like I was going to be sick out of nowhere. I get a lot of stomach acid with my lupus so it's not necessarily unusual but this one was a bit out of the blue.

Within half an hour I was being violently sick and thought oh god food poisoning here we go. At the same time I was getting really bad stomach cramps from trapped wind which once I stopped being sick led into really bad diarrhoea. By 4am I'd stopped being sick but the other end was still going and I'd started to see some blood so I rang the 111 service as I was a bit worried about it. They went through their assessment procedure and told me that they thought it was food poisoning and I would be fine to call my own doctor out that morning. I spoke to my doctor by phone just before lunchtime and by then it was very clear I was very noticeably passing blood but fresh red blood so I guessed it might be a small cut. Half an hour later the doctor turns up to check and says she thinks it is gastro enteritis of some sort and she can't see a cut. I hadn't been able to keep any fluids down that morning but she sorted a prescription for dioralyte and said to keep drinking little sips of it even if it did make me sick and the usual advice re flat coke to get sugar onboard Etc. She was concerned about the bleeding as it was unusual to see that so early but my temperature was normal so she would check on me again when she had a chance and to update her that afternoon if I needed to.

By 4pm I was getting what felt like bad period pain across my stomach and I passed a significant amount of blood on its own. I rang the surgery to update the doctor but unfortunately she'd had to go out on an emergency call. They rang me back at about 6 with a message from her that if it happened again I should get back on to 111 for them to reassess me and either get an on call doctor to come and see me or send me to a&e. I then fell asleep for a few hours but woke up at 9pm doubled up with stomach cramps and passed a whole load more. At this stage 111 decided that I needed to go to A&E.

After an hour of waiting to see the triage nurse and another 45 minutes waiting to be called round for blood tests I had passed another 6 loads of blood but for smaller amounts. My temperature, which is normally 36.2 for me, had shot up to 37.9 and my pulse rate was far too high which was concerning them. I was sent for x ray, urine sample and blood tests. The blood tests came back indicating an infection and due to the fact I'm on methotrexate and the high temperature Etc the junior doctor in minor injuries checked with the main doctors and they decided they needed to see me and probably admit me to be safe.

5.5 hours later the doctor finally managed to get round to reviewing me by which time the diarrhoea had stopped so ironically I couldn't provide them with a sample (if only they'd asked earlier!) and I was now holding down water, although with severe acid reflux, and I was more exhausted and reacting to the lights than anything. He then advised that he thought I had a severe bout of dysentery which threw me as I thought that was mainly waterborne and tropical but not always apparently. He was in two minds about keeping me in because of the methotrexate and my fever but by this stage I just had the temperature and the by now severe stomach cramps and they didn't have any beds anyway! If I start being sick again or my fever doesn't come down by Saturday evening then I have to go back in and they will look at admitting me then.

So we finally got home at 6,15am where I promptly sent the other half to bed for a few hours as he'd now been awake for 24 straight and I can't sleep anyway because my stomach is so painful so I stayed up with the puppy who is traumatised at having been left so long. I'll then go to bed once he wakes up and stay there.

I've been told to drink lots of dioralyte as I'm slightly dehydrated and take paracetamol for the temperature Etc but I'm stuck with these REALLY bad stomach cramps and wondered if anyone had ever had this and any tips to help? He said he doesn't want to give me anything to stop them as it slows it all down and they want my body to clear the infection as soon as possible. Hot water bottle isn't helping and is just make me feel hotter with a temperature and beyond that I'm stumped. I'm due to go on holiday Monday so desperate to get it gone before then ... and hoping to god the other half doesn't come down with it although the doc did say I shouldn't be contagious as long as i washed my hands properly Etc.

Flipping dysentery .. that's a new one even for me!

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Mifford profile image
Mifford
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Lupiknits profile image
Lupiknits

I'm so sorry you're going through this and I can't help. You have all my sympathy though. x

Mifford profile image
Mifford in reply to Lupiknits

Awww thank you - I'm now keeping down rich tea biscuits, a handful of tuc crackers and fluids which is good. Other half has just gone to pick up some more paracetamol and then I'm being sent back to bed for the duration so hopefully my body will fight it off quickly :)

Lupiknits profile image
Lupiknits in reply to Mifford

I'm so glad it's easing up, and you can start gettijng something down. Rest, rest and more rest, snuggling the puppy!

I wonder how you picked it up? I've never heard of it in this country. Mind you, there's plenty of mucky people around who don't wash their hands. x

Mifford profile image
Mifford in reply to Lupiknits

Apparently (according to doctor google) there are two types and I don't think it's the exotic one. The way the doctor was talking about it it's basically a form of food poisoning and is bacterial infection not viral. Our cooker hob is broken at the moment so we had no food in that worked for just the oven and I got some frozen meals 2 nights running .. lemon tarragon chicken one night which my OH didn't have and chicken leek and ham pie the second which he did. They both seemed cooked through but could have been something in there or I had low fat pate for lunch that day as it only had one day left on it and that's my guess - I didn't realise I'm not meant to have pate while on methotrexate as it has certain bacteria in it that are at levels fine for most people but not when immune suppressed. It tasted fine though and I've had it before. On the bright side it's made my OH paranoid enough that he's gone through everything in the fridge and thrown out anything even close to its best before date which saves me a job 🀣🀣

misty14 profile image
misty14 in reply to Mifford

Hi mifford

Glad your starting to feel better.!. What an awful experience and so worrying!. Do hope you continue improving and I'm sure puppy love will help no end. XπŸ’πŸ˜Š

Mifford profile image
Mifford in reply to misty14

I should clarify the "puppy" is 17 months old and a 40kg huge Labrador who thinks he still fits on my lap for cuddles - he's not talking to me because I keep disappearing upstairs to sleep and I won't let him squash me at the moment and he's a bit confused by it bless him. We're off on holiday to Cornwall on Monday where he'll get loads of fuss and numerous walks so he'll get over it soon though bless him 😊

misty14 profile image
misty14 in reply to Mifford

He sounds like the perfect cure all. Have a good Cornwall holiday mifford. Glad your improving every day. X

Mifford profile image
Mifford

The good news update is I've slept pretty much for 18 hours other than when the OH has woken me up to make sure I'm drinking enough and giving me dioralyte. The cramps are down to about every 2 hours now and my thermometer shows my temp is normal but I keep feeling flush and waking up drenched in sweet - I've stopped shivering though so that's good. I've not been sick and stopped passing anything now which I'm taking as a good sign - belly is making some impressive noises though 😳 More rest today and hopefully I'll be back on my feet more tomorrow. Still happy to take any advice on easing the stomach cramps though - they're pretty brutal x

misty14 profile image
misty14 in reply to Mifford

Peppermint oil capsules might help to calm things down mifford!. You can buy them OTC. X

smudge1980 profile image
smudge1980

Hi Mifford, I had same symptoms as you a few wks ago without the passing of blood though. Really bad stomach cramps, vomiting and diarrhoea. Lasted about a wk, with symptoms reducing as time went on. It was the sick feeling that was the last symptom to go. Can't really give you much advice except keep the hand washing up and keep hydrated. I drank lots of ginger and lemon tea and slept lots. Hope you recover soon and are ok for your hols.

Hi from me Mifford. Sounds very familiar I must say - I had something similar occur a few months ago - but didn't need admitting so not as bad as yours. I was taking Augmentum antibiotic at the time for a UTI so we all blamed this. But the period of nausea and stomach pain preceding and following it made me query the antibiotic theory - mainly because I've been here before in my life. I'm on highest dose of Mycophenolate so my immune system is presumably pretty suppressed.

The first time this happened to me was as a child. I was admitted to hospital for 3 nights vomiting bile and in terrible pain. I think it was due to severe constipation following taking codeine and antibiotics for a broken and badly infected toe.

Second time it happened was in India aged 21 and all alone - where I did have actual dysentery I assume (never actually tested this but it was naturally suspected) - ended up in a mission hospital in Mysore - which was an unforgettable experience!

Since then I've had the same thing happen twice on Azathioprine - which turned out to be pancreatitis - and then again later that year when I can find no explanation other than possible Guardia from untreated water supply (in Fife!).

I think that I've always had a very precarious/ rebellious immune system - prone to overreaction to all sorts!

Not sure this helps but I'm at least very glad to know that you're recovering and hope your Cornish holiday goes really well. 😊

CRYSTAL11 profile image
CRYSTAL11

Strange I had the same last night it's the second time it's happened mine was trapped wind and feeling so sick with diarrhoea all night. No sleep bad pains. Still feeling really queazy and still got cramps. It's really dangerous for me as I also have Addison's disease and when I'm like this I run out of steroids in my body. I can then go on to a Addisions crises where I have to go to A&E. just stopped in time took lots of steroids oh this Lupus is rough Go have a brilliant holiday and just enjoy it. Xx

Mifford profile image
Mifford

I may have been over confident this morning. Doubled up with stomach cramps randomly again today and although the thermometer says my temp is normal I keep getting very flushed and then feeling cold. Stomach is very dubious again and passing some blood so I don't dare move far from the bathroom. The good news is I am keeping down fluids and dioralyte and the doctor at a&e did say don't worry if I still have some more as it may take 72 hours to stop and it's nowhere near as strong as it was but don't think I'm out of the woods yet. Going to see how I am tomorrow and if I'm still getting feverish I think I'll ring the hospital for advice and possibly see if they want me on antibiotics to be safe. The idea of an 8 hour drive right now is just impossible but hopefully by tomorrow it'll ease off again. At worst I guess we'd have to go a day late which wouldn't be the end of the world

AgedCrone profile image
AgedCrone in reply to Mifford

Didn't they take stool samples in A&E?

They would tell if you need antibiotics.

I had amoebic dysentary caught in India, & I was in hospital in Singapore for three weeks on saline & antibiotic drips. If I were you I'd ask your GP for an urgent referral to either a gastroenterologist or a tropical medicine specialist. Any bleeding like you describe needs investigation.

Good Luck...hope it turns out to be the pΓ’tΓ©!

Mifford profile image
Mifford in reply to AgedCrone

They did want to but by the time the doctor was free to see me it was 7 hours later and there was nothing left in my stomach to produce one unfortunately. This one is bacillary dysentery and its different to the tropical one. They did do blood tests to confirm it was an infection and x rays to check for anything serious and from what the doc said the symptoms I had were absolutely classic for it. It has pretty much followed exactly the path he said. Thankfully am now on holiday and a week after it started I'm back eating normally now - it's still settling but I'm happy the worst of it is done now thankfully πŸ‘πŸ»

cpidoc profile image
cpidoc

Are you taking probiotics ??

Mifford profile image
Mifford

I'm not taking anything at the moment. In the last 4 days I've had dioralyte, I've managed a small pack of tuc crackers (spread over 3 days), 4 rich tea biscuits and last night I drank a chicken cup a soup but without being gross I'm wishing this morning that I hadn't. According to the scales I've lost 7lbs in 4 days now - it's there to lose but I think I'd go for more conventional means next time! :)

The good news is that this morning I'm no longer passing blood but my stomach is so tender it's unreal. As my mum pointed out last night though for the amount of blood I lost something must be pretty freaking damaged inside as it had to come from somewhere so I guess it will take a while for that to get back to normal.

Still doubling up with stomach cramps as if I'm going to have an upset stomach again and I'm now at the point of wondering if I should have some toast today and take the hit that is likely to come with it in order to get everything through my system or leave it until after we've travelled tomorrow in case it doesn't flare up until the morning.

I'm definitely better than I was but I've never felt less like eating in my life and I'm at the point of wishing it would just go away now! I'm planning to take some complan away with me for once it starts to ease off and I will add in probiotics once my stomach can handle things again to rebalance it but at the moment I really don't think my system will accept either unfortunately.

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