Seen the consultant this morning…

I’ve started passing tiny bits of gas the last couple of days, as well as green mucus, which the consultant is quite happy with. I’m being changed to free fluids and my PCA pain button will be reduced over the next day. They recon I will be home within forty-eight hours but, knowing my stomach, it’ll likely be longer.

I’m trying to stay positive though, so I’ll give myself until Wednesday next week. That’s when I think I’ll be well enough to go home. If it’s earlier though, great!

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.

I haven’t had much to report recently; I’m still waiting on a date for my surgery, and I’ve been feeling pretty good since going back to fulltime work. I’ve shifted my hours a bit so my work days are broken up so I don’t burn myself out too quickly. Other than being quite tired after work, I’m doing ok.




Do you guys know why I’m so adamant about you vaccinating your kids?

I’m immunocomprimised. It means my immune system is weakened. I have very weak lungs and I rely on herd immunity to stay safe.

I’m allergic to the shot people get for whooping cough. How do I know? I had a 3 week, painful reaction. Now, this was a while ago, before shit hit the fan with the whole anti-vax movement.

But do you know what my doctor told me? It was safer for me to get the shot that I’m ALLERGIC TO than rely on herd immunity because if I get the shot, I’ll be in moderate-severe pain for about 3 weeks max. If I get the disease, I will die. My lung capacity is bad enough, but my body is too weak to fight the disease.

So not only are you putting your child’s life at risk by not vaccinating them, you’re putting mine and all the other people who cannot be vaccinated at risk because of a selfish decision that isn’t backed by science.

god THIS. vaccinate your kids and vaccinate yourself too. my dad is also immunocompromised and relies on herd immunity. neither he nor anyone who lives with us can get live-virus vaccines (we can only get ones where the virus is inert/dead) because if he’s exposed to the weakened virus he will contract whatever disease it is, so herd immunity is SUPER important for everyone in our family.

the anti-vax bullshit HURTS people. my dad has been hospitalized before just from a common flu because people he knew didn’t get their flu shots, came in to work with the flu, and got him sick. even with my dad’s healthy lifestyle, the fact that he’s immunocompromised from leukemia means even a really common and easily treatable disease (the flu, bronchitis, whooping cough) could straight up kill him.

fuckin. vaccinate.

Also do you know how many people in the community are immunocompromised?

  • Every cancer patient
  • Every pregnant person
  • Just about every elderly person
  • All small children
  • Many people with invisible illnesses, such as autoimmune conditions, AIDs, congenital immune deficiencies, malabsorption issues etc
  • Heck, even those with jetlag or under severe stress are immunocompromised


Day 19

The TPN is finished! I still have the PICC line just in case but they’ll likely take that out tomorrow. The doctors are happy and are looking at Wednesday as a home date. I just hope nothing happens in the meantime. I do get the occasional ache in my gut but it’s bearable and paracetamol numbs it.

I saw my stoma nurse this afternoon and it seems I’m having a slight reaction to the adhesive of my ostomy bags. This could be to do with it getting much warmer recently so it may be a heat rash being irritated by the adhesive.

Also, she believes the reason I’ve had several bags in a row leak is because the opening of my stoma has shifted from top-centre to top-right so when it does it’s thing, the output is all going onto the same patch of bag which was causing it to corrode away faster, leading to it leaking. In order to combat this, I’m trying new bags. These ones look the same but they have a bump on the back that pushes into my tummy slightly in order to keep my stoma “upright” so when it’s active, the output should be a bit more even. I’m trialling two different types; the other ones has the same bump but has a different adhesive. It feels a little weird at the moment but I’m sure I’ll get used to it. I hope this solves the issues.

I called my stoma nurse today and got an appointment for Monday because the skin around my stoma has been red and soar for the last few days. I hope it’s nothing serious. I really don’t want to have change my bag type (I really like these ones – drainable, one-piece) so hopefully, I just need to use some barrier cream/wipes for a bit.