I felt it time for an update (AKA ramble!) on my blog of what has been going recently – I’ve had another few weeks full of hospital appointments, physio, hydro etc. you know… the average wild life of a twenty year old.
As a result of being on such high doses of Prednisolone for long periods of time, I have adrenal insufficiency where basically my adrenal glands have become lazy as they’ve been used to Pred providing the necessary cortisol for so long. Last Monday I had a short synacthen test to see if my adrenal function has improved. If it hasn’t, I’ll be swapped from Prednisolone to Hydrocortisone and stay on that long term. If it has improved, I’ll be able to very slowly wean down (and hopefully eventually off) of steroids, but I have to wait for a telephone consultation at the end of next week to get the results and find out the plan going forward.
I also had a repeat video fluoroscopy which I just yesterday got the report of; the test is so vile and due to my bowel not working they couldn’t use barium, and so had to use Omnipaque which was so bitter! The report showed a moderate reduction in my swallow function, with some aspiration. I’m waiting for my SALT to come round in the next couple of weeks to see if anything else can be done to help me, if there are any other interventions such as my current use of thickener or if they will proceed with a PEG. Whilst there can be swallowing issues in EDS, there have been suspicions of me having MS in addition due to the nature of my problems, but I’m not able to cope with having tests for that at the moment on top of everything else so will just be something I’ll keep in the back of my mind.
I finally have positive port news, as my new port seems to be working – third time lucky! I have my bloods taken from it, can have IVs through it as I did for my short synacthen test, and I hope it’ll continue working and make my life slightly easier.
My bladder problems have been worsening; intermittent self catheterising was do-able, but now, no matter how often I catheterise, my bladder leaks in between. I have to use incontinence pads to deal with it but at 20 years old I find the situation devastating. I had waited for a urology appointment for months that was yesterday, but I got there and there was a mix up meaning the clinic should have been cancelled as the consultant wasn’t available. I had to sit and wait for around 4 hours, and was squeezed into the registrars clinic; it was a bit of a waste of time as I needed to see my consultant considering the severity and complexity of my history, so I’m hoping I’ll be squeezed into a clinic on 10th October, but I was told that they will consider Sacral Nerve Stimulation. If I am eligible, there will be a trial phase and my symptom improvement will be evaluated, although there is a concern of the wires migrating due to the nature of my connective tissue disorder. I’m not getting my hopes up and will wait to see what my consultant says, but if not a Supra-Pubic Catheter or a Urostomy will be considered.
I am still waiting to hear for a date for my ileostomy but I’m hoping if both operations go ahead and are successful, they will help stabilise things and give me a new ‘normality’ to adapt to.
I thought I’d end my post on a positive note (I know… it’s unlike me!) but we have to appreciate the good things in life. I was absolutely BURSTING with pride this weekend as my sister, Laura, completed the Great North Run. There was some complications with running it for EDS, so instead my sister did it for Crohn’s and Colitis UK, another charity that is very close to our hearts. Raising over £500 and being motivated herself to train for it, Laura completed the run and I could not be prouder.