u/Mediocre_Hat_

Hi all! I’m looking for some advice as I’ve had the roughest month and a half of my life. I’m type 1 diabetic, and in April I got seriously sick. The running theory is gastroenteritis, but I didn’t get better, I couldn’t eat, and I ended up in ICU with severe diabetic ketoacidosis that very nearly killed me. I was in hospital for a couple of weeks, started recovering slowly, and was discharged two weeks ago. Since then I’ve been recovering very slowly, until a couple of days ago (Tuesday) when I suddenly took a massive turn for the worse again.

My main symptoms are nausea so bad I can’t eat, awful brain fog (confusion, difficulty concentrating, general wooziness and dizziness), normally before the nausea hits I get this cold feeling right through my body, like the sort of feeling you get when you get told terrible news, it’s awful. I’ve had some diarrhoea as well.

Now I’m aware that a lot of these are common side effects of methotrexate, but I’ve been on the drug since December. I had a similar experience of sickness at the end of March that lasted a couple of days. But it seems odd that id be fine for three months (December- end of March) before suddenly experiencing all of these side effects so dramatically? Can methotrexate do that to you after months of being fine, or is there something else going on here?

I’ve spoken to my diabetes team and posted in the diabetes subreddit and by all accounts, it shouldn’t be the diabetes causing this anymore. The only thing I can think of now is the methotrexate. I went to A&E on Tuesday when I got ill again, and they ran bloods and said everything was fine there and my infection markers were all normal so there shouldn’t be a bug or anything causing this. I feel like I’m losing my mind trying to figure out what’s making me so poorly! Any advice would be so appreciated.

(For added info, I take 8 methotrexate tablets on a Monday, then folic acid every other day. The first time I got sick was a Wednesday, then both other times were a Tuesday)

Hi guys! I’ve posted in here a couple of times already, but for anyone who missed it, at the end of last month I was admitted to ICU in DKA with ketones of 6.9 (blood sugars were fine but the running theory is I’d had gastroenteritis the week before and it had really knocked my body out of whack). I was ill, didn’t eat for a while, then I started getting better slowly, managing some food etc, and was eventually discharged two weeks ago.

I was still a bit sick when I got home but since then I’ve been doing okay, lots of rest and recovery etc. until last night. I’d felt alright during the day, albeit a bit sleepy. Then around 6pm I suddenly started feeling awful, these horrible cold feelings right through my core, really nauseous and light headed and generally out of sorts. After a bit I checked my bloods as I started feeling low as well, and I was 4.1 and dropping. I had treatment, they dropped to 3.8 before coming back up, but I didn’t stop feeling low even after I was in double digits. By this point id not eaten since lunch and the thought of food was making me feel even worse. I had a real panic attack since this was exactly how my illness had started when I had gastroenteritis. I waited an hour or so but it didn’t pass, so I went to A&E. They did the usual bloodwork and said everything was fine there, gave me some IV fluids for dehydration and then sent me home. I’ve felt pretty rubbish today too, but perked up briefly a couple of hours ago and got some food in me.

Now I’m trying to settle down for the night but the nausea and tummy discomfort are really bothering me. Part of me feels I should be readmitted to hospital for observations because I’ve been sick since 14th April at this point, I should be getting better but I feel like the past two days I’ve taken several steps back. My main concern is the nausea and the wooziness, I’m finding it so hard to concentrate and it feels like my brain isn’t in the room with me. My GP prescribed some anti sickness this afternoon but they aren’t ready to collect until tomorrow, and they did put me on antiemetics during the gastroenteritis that didn’t help at all. If I get so sick I stop eating again, I’ll go into DKA again and have to relive this whole ordeal. I feel like nobody is really taking me seriously or listening to me, they just keep saying “stay hydrated” and I really am trying, but I feel so rough and out of it. Again, that part of me saying I need admitting back to hospital is so loud but nobody I’ve seen is listening because my blood work came back okay.

What do I do? Is this all normal for DKA recovery? How long will this take? I honestly thought I was getting better but the past couple of nights seem like such a step backwards. I’m confused, I’m scared, and I could really use some advice :( thanks in advance

Basically the title. If anyone saw my last post, I got seriously ill a couple of weeks ago from gastroenteritis that led to inability to eat, that led to DKA with my ketones at 6.9 despite glucose levels balanced around 7.

That was on Sunday 26th April. I spent a few days in ICU, then was moved to a regular ward for monitoring. Ketones started coming down around 2nd May once I started eating again, and are still <0.1 now.

The problem is, I still feel absolutely crap ☹️ I got discharged on Wednesday 6th May, but that day I started feeling a bit sickly and woozy again. I kept checking ketones and they’re still fine. My sugars are running really high now, averaging around 18. The diabetes nurses tweaked my pump (I’m on omnipod and libre) to increase some of my ratios etc, but I’m not seeing a difference yet.

I went back to A&E yesterday as I was so scared I wasn’t able to eat again. They referred me to Same Day Emergency Care, who ran blood works etc and said all my infection markers were back to normal and my ketones were fine. Nobody seemed particularly worried about how high my blood sugars were running.

I guess my question is, even though I’m supposed out of the woods now, ketones are down and infection markers are normal, I still feel so rubbish presumably as a result of everything my body has been through these past few weeks. How long does it take for me to feel like normal again? I feel like I barely know who I am anymore, I’m constantly woozy and lethargic, or feeling sick. I’m so overwhelmed from everything that I can’t stop crying. My body feels so weak from running on empty for such a long time. I just want to go back to how I was before this happened 😢

Just to add, I haven’t been in DKA since I was first diagnosed 16 years ago, so this entire situation has felt completely new to me. I just feel so damn sad.

Hi guys! Type 1 of 16 years here, diagnosed at 11 following a severe episode of DKA leading to a coma, two seizures over the next couple of years from severe hypos, then absolutely no medical emergencies or horror stories… until three weeks ago. This is gonna be a long story, but I wanted to share it with you all, partially as a warning because I didn’t know this could happen, and partially for a bit of camaraderie and sympathy because I’m still very much in shock at what’s happened to me 😭

So it started three weeks ago on Tuesday (14th April). I’d just had dinner with my boyfriend, just a bowl of cereal as we weren’t super hungry, and we were settling down to watch some tv before bed. I suddenly got this feeling like my blood sugars were plummeting, checked (I’m on a closed loop omnipod and libre), bloods were fine and not dropping. Then my whole body went ice cold for a few seconds and the most awful nausea hit me out of nowhere. I have a real phobia of vomiting so whenever I feel sick I kind of freeze up and have to put all my energy into focussing really hard on not being sick. So I’m sat frozen for a good 15 mins or so fighting the nausea, manage to make it to the bathroom and have horrific diarrhoea. I let my boyfriend know and go to bed, but the nausea and the diarrhoea persist through the night and into the next day.

I slept pretty much all day Wednesday 15th, couldn’t get out of bed, I had awful brain fog and confusion on top of the sickness. Boyfriend did a bit of research and we figured it was possibly food poisoning from some bad tofu we’d had on the Monday night (he wasn’t sick but his immune system is made of some real tough stuff, whereas mine sucks lol). So okay, great, food poisoning. Never had it before, felt like I was dying, but everything online said it should pass after four days or so, so I decided I’d just tough it out.

Readers, it did NOT pass in four days. By Saturday 18th I’ve stopped eating entirely due to the nausea. The thought of any food made me want to be violently sick. Still it was the weekend at this point, I had a GP appointment on the Tuesday so I figured I’d wait a couple more days and talk to the GP about it.

By Monday 20th, I rang 111. They advised I speak to my pharmacist, who advised I speak to the GP, who had no appointments that day and advised I go to a walk in clinic. So down I go, still desperately nauseous, and the give me some anti sickness and tell me it’ll clear soon.

On Tuesday 21st, I speak to my GP at last, but I’m told more of the same, “just hang on, your body will fight it” etc. it got to the afternoon when I decided I couldn’t hang on any longer and needed to go to A&E. I was examined there and they advised that I was on the cusp of DKA (although not quite there), that I’d likely suffered from gastroenteritis and that I needed admitting to a ward. Awesome. So from Tuesday to Friday 24th, I’m on an infectious diseases ward. I was bored, not getting better, still not eating and very fed up. But I was still discharged that Friday, advised there was nothing more they could do for me and to “go has my diarrhoea at home”. I was so eager to get out that I went without question, but as soon as I got home I had another bad bowel movement and felt rougher than ever. (Note, after this movement, I didnt go again for around five days, baring in mind I’d not eaten for 7 days at this point there was just nothing left in me.)

I struggled at home through Saturday, but knew I’d made a mistake in leaving. By Sunday 26th I had to go back to A&E. I’d been trying to drink a meal replacement shake that morning since I couldn’t manage solids, and as I was checking into reception at hospital I felt this awful heavy feeling, a moment of blackness, and then I full on exorcism-vomited ALL the milkshake and water I’d been forcing into myself that morning, and I’m talking everywhere, it was awful, they had to shut that window of reception and drag me through to the examination room immediately.

Fair warning, this is where things go from crappy to genuinely the stuff of my nightmares. I would also like to take this opportunity to add that so far throughout this ordeal, my blood sugars had been amazing, single figures and a steady line throughout.

They managed to get some blood from me to test although I was EXTREMELY dehydrated. Ketone levels came back as 6.9 (cue me absolutely panicking). For the next several hours, five different doctors tried to get a cannula into me to start IV saline, insulin, glucose etc. only, I have difficult veins at the best of times and they could NOT get into me. The first two doctors tried genuinely around 20 times up and down my arms and hands. They brought an ultrasound machine out to find my veins (I didn’t even know this was a thing) and still couldn’t get the cannula in properly. Eventually one doctor managed to get one in one arm, and one in the other. Happy days right?

NOPE. After about an hour I realised how much my arms hurt, like this awful aching. They’d snagged a few tendons and nerves with all the prodding so I chalked it up to that, until my boyfriend pointed out to the doctors that my arms were ballooning. I was pretty gone at this point and had been puking the coffee grind brown DKA sludge intermittently the whole time so I hadn’t noticed, but both arms were indeed grotesquely swollen. Turns out both cannulas had come out of the veins but were still in my arms, and were just pumping all the saline solution into the space in my arms. It was disgusting, I was bloody and bruised and so damn tender, and suddenly my arms were completely unusable as well. So out came the cannulas and were back to square one.

At this point, somebody mentioned putting in a central line in my neck. I’m fine with needles and I’m fine with blood, but veins absolutely terrify me, and the thought of somebody going into the veins of my NECK with a needle was beyond horrific. I had a complete panic attack at this point, begging them not to. I offered my hands (too swollen), my feet (checked with ultra sound, no veins even visible), even my groin at this point. I can’t tell you with words just how terrified I was now, I was ready to just fall into a coma before I let somebody stick a needle in my neck.

After several hours in resus being stabbed to no avail, I got moved up to ICU. Here they inserted an “arterial catheter” in my wrist (also a horrific experience, I remember screaming a lot in pain and not much else), puked again once this was done. Then they told me it was time for the neck cannula. Again I begged, I pleaded, I sobbed, my boyfriend explained my terror when I got too worked up. I asked again for the groin instead, but one doctor mentioned a high risk of sepsis in that area which freaked me out even more. At this point I think I’d worn myself out, I was scared for my life, I was scared for my boyfriend having to witness all of this (we’ve been together nearly a decade and I’ve never been this sick the whole time I’ve known him). It was maybe 2 in the morning, so I relented and agreed to the neck cannula.

Of course I know it was the right choice ultimately, but my god I hope I never have to go through anything like that again. The feeling of the needle in my neck, then the tube, then the fishhook pulling as they sewed the tube in place, I don’t think I’ve ever felt so frightened in my life. Again I remember screaming, I remember all the pulling sensations and the pain and squeezing my boyfriend’s hand as he whispered to me. I remember th doctor saying he was finished, and I remember going limp on the bed. I don’t remember an awful lot more of what happened that night. I must’ve fallen asleep at some point, and my boyfriend god bless him stayed sat in one of those awful plastic hospital chairs all night watching over me, holding my hand.

That was over a week ago now. The first couple of days on ICU after that were hell. I darent move my head in case the cannula came out, I couldn’t sit up, drink, go to the toilet, anything. I’m 27 years old and I was confined to lying in a bed, peeing in a bedpan and all over myself, having nurses wipe me and clean me and change my sheets. It was mortifying. After two or three days I could use the commode which gave me a bit more independence, but I was still tethered by the neck to several drips and too paralysed with fear to even attempt to move. My back and neck started to ache from the angle I was forcing my head to stay at, but I was convinced even the slightest movement would rip the cannula out.

The following Wednesday (three/four days in ICU), they decided I could have the arterial catheter and the central line removed. Obviously this wasn’t as bad as getting them in, but my GOD it was unpleasant. I hadn’t actually released the neck cannula had been sewn in until the day before, and I’ve never had external stitches before, so having the nurse rip them out was an awful experience. And getting the actual tube out? Oh my GOD!!! There’s a mental illness I believe called morgellens or something where sufferers believe they can pull fibres out of their body like foreign objects, and the removal of the tube was exactly what I imagine these people go through. But at last, thank god, the worst part of my ordeal was finally over. I was no longer hooked up to anything, no longer tethered like an animal, I could turn my head to the left for the first time in days and it felt amazing.

Two days after that (Friday 1st May), I was finally transferred from ICU to a general ward. The next day, I suddenly and inexplicably got my appetite back. I was eating for the first time in nearly three weeks, and it was incredible. I ate like the very hungry caterpillar that day, just ravenous, copious amounts of food, replenishing a body that had essentially starved for half a month.

It’s Monday now, three days since I started eating again. My ketones have come right down to <0.1 which is amazing! The only issue is that my blood sugars have now decided it’s time to go absolutely bloody haywire. Since I started eating I’ve been hovering around the 16 mark, although most of today I’ve been between 18 and 21. Have been bolusing and correcting religiously, but they really don’t want to come down. Other than this, I feel so much better! I can eat again, the brain fog is lifting, the nausea is gone. I did have my first bowel movement in several days and it still wasn’t entirely solid, but compared to what was coming out of me in ICU it looked like the healthiest turd known to mankind.

Doctors seem really happy with where I’m at, and hopefully they’ll let me go home tomorrow! I’m still very much battered and bruised, and I think it’s gonna take me quite a while to really process exactly what’s happened to me over the last few weeks. The doctor in resus explained that the ketones had spiked so viciously even though my blood sugars were really good due to the infection I’d had previously, which was presumed gastroenteritis. Apparently gastrointestinal infections and illnesses can really wreak havoc on a diabetic immune system, and unfortunately whatever it was that I picked up decided it wanted to do some major damage.

It’s been… a real journey to get here. I haven’t DKA’d since diagnosis, and there were times I was convinced I was about to die, and times I thought I’d never feel normal and well again. I’ve lived through some of my greatest fears, I’ve fought desperately to get better, and honestly, I’m super proud of myself. I knew something wasn’t right in my body that weekend after I was first discharged from the hospital, and I’m so glad I listened to my instincts and sought medical attention before it was too late.

TLDR; I got gastroenteritis, stopped eating, ketones went to 6.9, I nearly died, and then I got a cannula in the neck.

(I’m never ever getting sick again lol)