21/12/2025
Hello Winter Solstice.
It’s 4 sleeps til Christmas. I haven’t even got my decs up in my room yet as a deep clean is warranted first. Mum has got them down from the loft and is ready to bring them in when I’m up to having her tackle it.
I didn’t realise that my previous update on Go Fund Me didn’t automatically post here 3 months ago. Feel free to read that first. (Warning: it’s long!) https://www.gofundme.com/f/help-chloe-live-a-better-quality-of-life
Now on to my most recent entry to my blab-on-a-lot about my health journal… 📝
We were supposed to have genetics video appointment on the 1st December (we did check beforehand because we have never heard of an appointment being on a Sunday!) but we waited 3 hours and nobody came online. We haven’t heard from anyone since. Hopefully I’m still in the system after all these years waiting for this pretty significant consultation. 🙃
I was also supposed to have a surgery consultation at a local hospital on 4th December, but the letter went elsewhere and was too late notice to book transport by the time we received it (less than 72 hours beforehand.)
I was not physically or mentally prepared for it anyway, but it would have been nice to get it out of the way before Christmas and have a plan for the New Year! It’s been rescheduled for 14th January, but with someone else. The main surgeon (who my local GI referred me to for my complex case and I sent a begging letter to) does do private appointments so we’re going to see if we can see him and pay a little extra for a home visit. That way we can discuss things thoroughly without me being in a state from the travel and risking catching anything at the hospital. Worth a try. Then he’ll hopefully be able to refer me on to the NHS list, if I’m approved.
As far as I’m aware I can’t get this surgery done privately due to being on TPN, but it is definitely something I will ask about since ‘elective’ (non emergent) surgeries currently have an over 6 month waiting list. Cancer patients are being operated on first, which is understandable, but also means more cancellations and increased backlog for the non malignant patients who often get their surgeries cancelled due to uprise in emergency cases at this time of year.
Unfortunately I’m back to screaming and crying every day with my fistula again and can feel my bowel shutting down — I’m just so mad because the intestinal motility improved a little over the past few years, and is a result of nobody repairing the damage from the degraded stoma, the tube protruding my abdomen and me being left on TPN!! Yes it was necessary, but NOT for 4 YEARS!! My liver enzymes are also increasing again; which could be a side affect of the TPN or the return of gallstones.
My bladder stones feel far too large to pass now and causing so much discomfort. I’m not liking how my urine is looking either, but nothing gets done about it unless there is a change in my blood. Hopefully I can continue to avoid acute infection and wait it out to have them blasted with a laser whilst I’m under GA for the fistula surgery. That would be the logical thing to do, but this is the NHS we are talking about!
Last but not least, for over 6 months I’ve had what I thought was a mixture of mast cell reaction to my sweat and some dodgy moles / skin lesions on my back that keep bleeding from the slightest friction… but my GP thinks it’s a gnarly fungal infection and since I’m bedbound [more susceptible to pressure sores] he’s concerned that it could turn rather nasty quite quickly.
It doesn’t help that my pressure mattress is broken (it is 9 years old!) and the company can’t change it until I’m transferred out of it. So we have to ring them when I next go into hospital.
I have been prescribed anti fungal cream which I know I will react to due to multiple incompatible ingredients, but been told to patch test and to see how bad. IV anti fungals are hard to get in the community and I wouldn’t tolerate oral solutions via my tube, even if my bowel didn’t have a hole in it… So, for now, I’m keeping up with my natural regimen of soapless cleanser and Colloidal Silver gel and trying not to itch or wet scrub the peeling skin off. Need to keep it as dry as possible and have my eye on some bamboo cotton mattress protector pads to replace the disposable ones that are likely contributing to the problem. They would also be easier to slide underneath me as often as we like rather than having to remove/replace the bottom sheet, which takes so much time and energy.
Maybe when I’m in hospital next someone will prescribe the IV anti fungals since I have had oral and vaginal thrush for 4 years, fungal nail for over a year and now this thriving on my skin. The last thing I need is it causing open wounds or travelling to my bloodstream via my central line.
Every day there’s something that makes mum say “shall I ring somebody” thinking that I’d get the help I need - but that’s never been the case. So I get fustrated with her, even though I know she’s only trying to help and doesn’t like to see me suffer. We both need life to get better.
It will be interesting to see what the appointments in the new year bring. Longing for just one medical professional to be willing to take charge and just sort everything out once and for all, because there IS a solution for a fair few things going on and it’s all just getting ridiculous.
I just hope I don’t end up in hospital for Mum’s 50th in February, because I want to make it as special as possible for her. I’ve been working on a surprise project since February this year yet still far from finished. So I’ll be getting on with that now!
Incase I don’t get the chance to make another post, wishing all that celebrate a Merry Christmas / Happy Yule or simply a great day. 🎄
Love & Light,
Chloe. ✨
