Worst night in a long time

So, yesterday evening was spent with my partners Oma (she’s German) celebrating her birthday and we had Chinese, which I’m usually fine with. However, shortly after eating it, I found my output had beco. Every watery and the skin under the adhesive was super itchy. I tried to ignore it but by the time I got home a few hours later, it had become painful. I decided to change my bag, which would be the second time that day, and go to bed. That didn’t work; it was still painful and itchy and I couldn’t sleep. My solution was eat half a packet of mini marshmallows and to take a codiene tablet. This has worked so far but I need to make sure I drink plenty today to avoid a blockage.

I’ve been advised by both my GP and my stoma nurse to increase my loperamide intake from four single doses to four double doses per day (I’m not sure on the exact measurements). I started doing that yesterday lunch time and I’m assuming it just needs to get into my system but it seems to be taking its sweet time.

I’m very frustrated and tired but I’m trying to be patient and stay positive. My new blob is not making either easy. I hope everyone is having a good and safe week so far. Rant over.

This was a couple of minutes after standing, walking about five slow steps and sitting back down again.

To answer @bendywarrior ’s questions, it is much lower when I’m laid down (between 70 and 90) but this is normal for me if I’m standing or sitting down. It does slow slightly if I go from standing to sitting sometimes too.

I don’t remember if I’ve already mentioned this but I’ve had an abnormally high resting heart rate since leaving the hospital at the beginning of April. (And by high, I mean consistently higher than 110bpm).
I have since spoken to my GP and had a blood test to check my potassium levels, which came back fine, as well as an ECG. The ECG showed a regular but high heart rate of around 90-100 so they’ve referred me to the hospital out-patient cardio clinic to have another type of ECG (the proper name of which escapes me) where they put goop on your chest and use a scanner to watch your heart beating. Fingers crossed they’ll figure out what’s causing it. I’m still on prednisolone, which I know can cause a rise in heart rate, but it’s never been this high before. I’m hoping it’s nothing serious. Someone from IBDSuperheroes has suggested it could be the beginnings of POTS so I’ll talk to the doctor when I go for the ECG.

pb8:

it really bothers me that so many people on this site treat ableism like it’s black and white.

just now i saw a post where op was like “i’m glad that spinners are popular because it normalizes fidgets and decreases stigma” and someone replied like “no!! it’s absolutely TERRIBLE that neurotypicals are using these fidgets because when they get in trouble they make things harder for mentally ill kids!!” and like you guys do realize that? you’re both right? it isn’t a decisive fact that neurotypicals using fidgets is either good or bad, there are both benefits and consequences that need to be taken into consideration.

a few months ago there was a post going around that was like, *neurotypical voice* why are you bouncing your leg, and somebody reblogged it saying that the post was ableist because autistic kids can get overstimulated by leg bouncing. i go to a school for the mentally disabled, and i’ve been in this exact scenario, my classmate wasn’t able to focus because i was bouncing my leg and although i felt bad i told him that i wouldn’t be able to stop for long because i do it subconsciously due to my adhd. he wasn’t being ableist for asking me to stop, and i wasn’t being ableist for saying i couldn’t, we just both had different needs. in the end, our compromise was that i went to work in the computer lab.

you have to understand that there is always more than one side to issues like these, and that we should be striving for understanding and balance over demonization of one side and blind support of the other. this is especially relevant when people on both sides are mentally ill or disabled, because sometimes symptoms will clash and you just need to deal with it.

I’m probably what people would call “neurotypical”, meaning, I don’t have a diagnosis

nor do I exhibit symptoms of any mental illness (aside from de-realisation). However, I find my fidget cube very helpful when in stressful situations. For example, when I went down to the theatre for my surgery last month, I took my cube with me (even though I was told to leave everything in my room) and found that focusing on the spinner with my thumb was enough to keep me from thinking about what was going to happen. It also gave the nurses something to talk to me about whilst en route to the theatre instead of soul-crushing silence.

So, because of the current political situation over here, as well as medical expenses getting much worse, I may end up making an emergency exit from the US to marry and live with my gf in the UK (so I can get on the healthcare program out there, because socialized medicine). If this emergency plan is used, I was wondering if there are any spoonies in the UK who know of any good doctors that I might be able to bring my records to (bonus points if it’s near Southampton). I don’t want to start over

spooniestrong:

UK Spoonies, please help? 💙

I’m currently being seen by the IBD team in Southampton General Hospital. They are a fantastic group of specialists and have looked after me so well. Once you register with an NHS doctor near wherever you’re going to live, they should do a check-up in order to assess your health, and, from there, refer you to someone on the IBD team so you can get the correct care. Hope this is helpful.

i never wanna see this BS again god

ibdammed:

myowndeliverance:

Listen, no matter what your fave youtuber/”health guru” says, the following things are absolute bullshit:

  • Juice cleanses do not do anything health-wise! Except probably lead to you getting insufficient calories for the duration! There is nothing to “cleanse”, because…
  • Your body does not have a “build up of toxins” you can detox away. Either your liver and kidneys are sorting shit out, or you’re experiencing severe health problems and should see a doctor. In particular, the idea you have a build up of heavy metal in your cells is ABSURD. Trust me. You’d know. “Toxins” is a word with no legal definition which is therefore not monitored in advertising. It means nothing.
  • Detox/weight loss teas are just mild laxatives. I wish people would stop advertising these things. I know we’re all broke and want that sponsership, but they’re not good things.
  • Something being vegan, gluten-free, “all natural”, etc. does not mean it cannot be bad for you. It does not necessarily mean it is better for you. It just means… it is those things.
  • If you ingest more of a nutrient than your body needs, the rest is wasted. It isn’t used by the body. Unless you have a vitamin deficiency, taking supplements is useless. And expensive.
  • Oh, and for the record, it’s not dangerous but you don’t need “eight glasses of water a day”. A lot of water comes from the food you eat. Also, any liquid that isn’t as strong a diuretic as, say, alcohol? Works to hydrate you. I mean, staying hydrated is good, but the eight glasses a day thing isn’t true. Just drink when you need water.

THANK YOU FOR THIS. I WAS JUST FIGHTING MY FRIEND ABOUT THIS THE OTHER DAY.

I know people who (try) drinking at least a gallon of water a day and that honestly gives me anxiety.

Thank you. It annoys me to no end when people insist “all natural” or “unprocessed” food is better when it’s not always the case. Also, there is no such thing as unprocessed food; if you cut up/skin/cook that carrot, it’s been processed!