Today has been bittersweet.
I feel like I’ve said that a lot, but the excitement of actually getting back into this whole ‘back on biological medication’ routine has taken over the fact that this was my last outpatient appointment at my hospital.
If you’ve been following me for a while, you’ll know that I relocated at the start of the summer for a new job – read more here and here – and with that came moving my IBD care to a new hospital. It was a big challenge as I was, at the time, not receiving any treatment and in between appointments; despite my Crohn’s being ‘stable’. And as recent events have shown – read more on my troublesome summer, especially August here – it was only a matter of time before my body threw down a red flag and caved to the demands of my disease.
I received my second loading dose of my third restart of Vedolizumab this morning. And after the panic of yesterday:
Things went ahead as planned. What was delightful was the fact my IBD nurse made personal time to give me my infusion herself. The sticking point with starting a new biological treatment is the loading dose regime – three infusions given week 0, week 2 and week 6.
NB: If you are new to IBD being treated with biological drugs – ones in which the medication alters how your cells react to inflammation, read more via NICE or my handy ‘Biological Treatment’ page here.
My WBC and my neutrophils were still raised but given the fact I am responding well to the steroid regime I am currently being weaned off of – ie no abdominal pain, no fever, no abscess, increased appetite and general feeling of wellness – and my Pre-Infusion-Sepsis checks were clear – no fever, no cough or sore throat, no chance of being pregnant, no changes in meds, no numbness or loss of feeling in fingers or toes, good BP and solid 02 saturation – we continued with my usual infusion.
I have been receiving a biological drug for almost all of my time I have spent diagnosed with IBD – I would estimate 4 1/2 of the 6 years I have had Crohn’s Disease for, so far. This means that I am used to being cannulated as an outpatient – which believe me, feels very different to being cannulated as an inpatient for some weird reason – and I am very used to the time spent having infusions too. Apart from Humira, which was delivered by a subcutaneous injection, my biologicals have been IV infusions, delivered by a CSN – usually my IBD nurse. She is a pro at getting me with a cannula first time, exactly like today. That was my first feeling of bittersweetness.
I have developed a close bond with my IBD nurses. They compliment each other well and work well together as a team to deliver a high level of IBD care for the patients at Good Hope. I can not praise them enough and I am ever so grateful for all their hard work; most noted is helping transition my care this month from Good Hope to Peterborough City.
They respect my experiences as a patient and know that I am proactive and determined to live well despite my chronic illness. Our relationship is one based on mutual trust and admiration and I will be sad to not see them again. But new relationships with new medical professionals need to be built and carved out from what I have already learnt and how I now go forward with my health and life.
What comes from today is a feeling of purpose.
It feels like this was all some how ‘meant to be’ and despite my sadness over being back on medication and realising that I still have the Crohn’s Disease, I feel lucky to be able to receive my medication, that it was approved and it is already helping me get back to my own ‘normal’.
My blood work is in good shape – my CRP was in the mid twenties on my discharge from hospital 10 days ago and today it was TWO. That is bloody amazing. My LTF’s are within normal range too as well as my U&Es. I next have bloods taken in two weeks ready for my third and final loading dose, this time in Peterborough. I’m weirdly excited and nervous about using a new NHS system and Trust to have my usual IBD blood work done and receiving my treatment. I have half a dozen hospital appointments lined up for October so far, so I am sure I’ll get used to it pretty quickly. I feel grateful that I have experience on my side. I remember how daunting trying to navigate the NHS was upon my diagnosis. That feels a lifetime ago but the lessons learnt and the tips & tricks I have transfer so easily.
Yes, sometimes being a patient is like having another full time job!
Sadly – or wonderfully – I enjoy being a patient. Not something often said and not something I would have believed I would ever say, but I take conform in being looked after. I take a stand when I know something isn’t right but I like being in the system. I feel cared for and known; even if it is as a “troublesome patient” with “a complex pattern of disease”.
In 3 1/2 weeks time, I’ll be almost at the end of my steroid course, I’ll be exploring the infusion clinic at Peterborough City Hospital and the next chapter of the IBD adventures continues.