u/aslothinbed

I have a full thickness biopsy tomorrow. Been in the hospital for weeks, they know I haven't used my intestines in many years. It was discussed that it's enough if I do an enema. Now they changed it all and want me to to 1-2 litre colonoscopy prep. I have had maybe 200 ml of liquids in total in the past 3 years combined. How on earth am I supposed to do that. I have a gj I'm trying to push it through the j but I'm so sick already and I barely even started. Only 30 ml so far. I don't know how they think this would be possible. I'm so upset right now. If I take 6 hours of sleep tonight doing 1 litre until the procedure tomorrow would mean I have to push 110 ml/h. Fucking how. I'm not okay. Already having a bad nausea day today too. And I did ask for something with less volume. They have nothing else

Update edit: it's been 16 hours since I started and I just had my first bm. This is going way too slowly, I'm supposed to have the colonoscopy any time now 😭

Hey, I'm looking at buying an H10 for heart rate tracking only for chronic illness, not for exercise. My question is, how does the tracking look like in an app? Will it show a graph of my heart rate throughout the day? Could someone show me what it looks like?

Ich bekomme nächste Woche eine Darmspiegelung, vertrage aber die Sedierung leider nicht gut und überlege jetzt es wach zu machen. Hat jemand Erfahrung damit? Wie schmerzhaft ist das? Und wie lange dauert das?

I know how the title sounds but hear me out. I've had a gj for 2 years now and always had trouble with it. It dislodges and the draining is shit, it'll only drain when I'm laying on my right side and moving my stomach muscles imitating throwing up. I've asked for it to be separated multiple times already but they refuse. Their reasoning is 1) the tube often doesn't seem dislodged on x-ray even though it is (everything given through the j, comes out of the g again and once the j extension is exchanged, it's fine again, no idea what's going on with that but happened multiple times now) and 2) I already had "so much abdominal surgery". I have a gastric stimulator and the gj. I don't feel like that's a lot and don't understand why that'd mean I can't have a j tube?

Another reason I want them separate is because the hospital I have to go to when the tube dislodges always argues with me, not wanting to replace it. It takes weeks, which means I have to stop all my meds. I'm at a new hospital rn that wants to try tube feeds again but if my tube doesn't work every couple of weeks for a couple of weeks, how will that work? And one of the most important aspects to me is the draining. I'm not allowed any anti nausea meds so draining is my only symptom relief and if it doesn't work I'm fucked. I need a working drainage tube that I can rely on

I personally feel like those are all valid points to get the tube separated, especially since I've tried making it work for 2 years and the issues are not getting better. Are they not valid? I don't know what to do or how to bring these points across as urgently as they are to me

I've been in the hospital for 2 weeks and I haven't had a crash, in fact I feel better than I did before even with a lot of exertion. Noise, lights, lots of talking, hours of car rides, less but better sleep. At home I was in a dark room in bed all day. I don't understand why I'm not crashing here. I'm not being treated atm, I'm just waiting for a surgery so it's not a new treatment making me better.

At first I thought it was adrenaline keeping me moving but now it's been 2 weeks and still no worsening of any symptoms, can adrenaline do that for that long? I'm so confused. Am I just better? Am I going to completely crash when I'm home because it's just adrenaline? Do I just not have mecfs with pem but something else like post viral fatigue? Don't get me wrong, I still have symptoms here. But 1) less and 2) they haven't worsened with exertion that would've made me worse at home

Before someone mentions mold in my house, I did move and went on vacation while already being diagnosed with mecfs and it did not change the symptoms to be in a different apartment or area, I also had a mold specialist evaluate my place

I just don't know what to do when I'm back home too, should I go back to a dark room in bed or should I start doing more like I am in the hospital? I'm scared to do something wrong and making myself much worse

I'm in the hospital and I overheard the nurses talking about a new patient with Norovirus 🥴 I know they're isolated but I also know the hygiene of hospital staff just suuuuckssss and they don't take it very seriously so I'm freaking out a little right now. I'll be wearing a mask the whole time but idk, don't feel very comfortable right now

I'm on iv nutrition because my digestive system is paralyzed and I don't tolerate my nutrition anymore, it makes me severely nauseous and causes vomiting. So now I have to decide between stopping it and going on hospice or continuing with severe nausea and vomiting. I know what I want but nobody would accept it. I don't know how I could possibly live with this level of nausea and vomiting while also still dealing with emetophobia