07/06/2025
Thanks to those wondering how I’ve been doing. I thought I had already posted this in March… but perhaps I fell asleep whilst I was reading it through and never published it. Ooopssiee! 🤦🏻♀️
To avoid overwhelming you with my babble and instead of delaying further trying to edit / combine them, I’ll schedule the more recent updates separately.
I’ve more or less been on a gradual decline since I was forced to reduce my hydrocortisone dose (which my private specialist increased for a reason) based on one high cortisol blood test done randomly in hospital *after* my two steroid doses! It’s only 5mg so it could be a coincidence… but I have refused to down it anymore until endocrine actually see me because I feel so odd and get all the adrenal crisis symptoms; especially after screaming in pain and/or overexerting (which literally happens just by talking.) My GP noticed the difference and agreed they have not handled it appropriately and should do more investigations as they’re going off nothing but ‘guidelines’ rather than individual patient experiences and there’s still tons of hormone tests which were abnormal years ago that the NHS haven’t acknowledged. I’m also yet to have my pituitary gland/brain scanned [to rule out a hormone secreting tumour] despite being in hospital several times and undergoing CT’s for other things. Very frustrating.
Fatigue has been extra bad latlely, turns out I’ve been deficient in both Iron and Copper… since August! So that’s likely something to do with it! Why we have just been told now, and this wasn’t addressed during my last hospital admission, [or maybe it was and this is old news] we don’t know… but my nutrition pharmacist kindly contacted us mid-November and asked if it was okay to add the specific supplements to my next TPN (as she remembers that I have many intolerances.) We were hoping that doing so would’ve given me a slight boost in time for Christmas, unfortunately no bloods had been ordered therefore nothing was added.
Whilst on the topic of nutrition, we had a call with the nutrition nurse on the 8th January. Once again it was not the consultant who is supposed to be specialised in fistulas. The one that was supposed to answer my questions since February last year, scheduled to come to our house in September but cancelled using the excuse of my GI bleed and “talks between Cheltenham & Bristol hospital”. But, once again, communication seems to be non-existent. The nurse wasn’t aware of the outcome of any discussions. The team wasn’t even aware that I had 2 blood transfusions… and that could have been very dangerous if iron was supplemented without the repeat bloods I’ve been requesting beforehand.
There’s still no news about this fistula procedure and I’ve only got a few doses of fentanyl injections left because my GP can’t prescribe those either anymore… despite the hospital saying he could. Infact, I apparently shouldn’t have been allowed home on them. But the acute pain team consultant in hospital authorised it due to no other analgesics suitable for me AND because she thought it would be short term— in her mind, nobody could possibly leave someone in this much pain with a fistula after having a severe bleed? Everyone thought it would be sorted in a few weeks. But here we are (now 8 long traumatic months later) and not even another appointment booked for the consultant to do the initial consult with us on the phone or at home.
Thankfully, 23rd December I had a video appointment with the local Chronic Pain Team, who were actually very helpful and understanding. Two consultants attended from different offices and listened to my mum first before being introduced to me. Consultants rarely do this, so it was a major win that I didn’t have to discuss my entire history before answering their questions and listening to my personal ramblings to fill in the gaps. They were empathetic of our situation, didn’t rush or interrupt me and raked their brains with how to help me. Most importantly, I didn’t feel like they were going to commit me for getting upset! They understood that I’m desperate for relief, not abusing the Fentanyl and opt for the lowest dose, but due to risk of abuse/addiction/overdose in the community they can’t continue to prescribe it. Before having a break from the call for 5 minutes they went through the holistic / non-drug methods with me, but it wasn’t psych focused. They came back to say that they discussed and agreed to 4 more vials to tide me over Christmas as long as Narcan was in the house. So they prescribed that plus paracetamol suppositories to try, even though we don’t know if I’m okay with them as it has completely different ingredients to the diclophenic ones I was previously on. We need to contact the manufacturer to determine what the main ‘hard fat’ is derived from and patch test castor oil on my skin before administering.
They put a stellar 3 page letter together which I hope will encourage my GI teams to do something faster. And I have a follow up booked for end of January... THATS the type of doctor(s) I need in ALL specialties!
The UTI/bladder situation is ongoing. I already have a pre-existing diagnosis of Fowlers Syndrome & Interstitial Cystitis, but ever since I was left without fluids for half a day + the CT contrast dye in September this has been extra and bothering me a lot. I’m pretty sure it’s also contributing to me not feeling great… but I’ve not been admitted for IV antibiotics.
�Medics seem generally worried about me becoming resistant to the reduced amount of IV antibiotics I can tolerate. Because if - or more likely when - I get sepsis again, we’re even more limited. I will eventually succumb to infection because nothing will work. So I understand that, it’s super scary, but how are we supposed to safely navigate this? I want to PREVENT going septic, not just wait and see!!! I can’t even try anything like prophylactic antibiotics or alternative treatments (D-mannose) down my J tube because it’s still displaced and won’t absorb anyway due to the fistula/meds draining out into the bag.
My GP was initially reluctant to treat due to lack of tick box infection signs (don’t get temps that stay or high CRP in blood etc until septic) and said my samples were just ‘contaminated’ but he has looked into it more (as have I) and turns out that studies show Standard Urine Cultures are only 50% reliable and contamination can mean more than one bacteria present or ‘biofilm’! He has since wanted to treat me but can’t physically prescribe the drug(s) and nor can community rapid response team. They could 6/7 years ago which was the last time I had IV Gentamicin at home but there’s been policy changes. So no wonder why hospitals are overwhelmed… it’s so silly.
Anyway, after failing to get a consultant I’m under to prescribe it and a home IV team to administer, my GP contacted Urology & Microbiology. I was eventually prescribed a treatment to irrigate my bladder. A product called IAuril – a Sodium Chondroitin Sulphate solution. It’s essentially as natural as a pharmaceutical can get and was recommended to me in 2023 by a specialist nurse. Someone I follow online has also had success with it. We thought we would have to find a private urologist and pay for it (£85 per 50ml instillation) as my GP was initially blocked from being able to prescribe it… but we managed to get it on the NHS in the end. Good job really as we only have half of that amount remaining from fundraising.
Hopefully I can start this treatment soon as it can take up to 4 treatments (4 weeks) to have an effect on the pesky biofilm. It would be so great to be able to get rid of at least one long term problem!
