Little did I know how much I should have appreciated my health throughout the first seventeen years of my life; although it didn’t seem like it then, living with just the diagnosis of Crohn’s Disease was a dream in comparison with what was yet to come.
Looking back now, I probably did fall ill more often than my friends, but at the time thought nothing of it. It must have been something I’d eaten, maybe I was overtired or I had just picked up a bug that was going around. I’d also had multiple dislocations but had a reason in my head for each one and thought they were ‘normal’. I’d always been sporty and into dancing so my hip must have come out because I was standing awkwardly in ballet, and my knee had dislocated in the night but that must have been because I’d moved in an unusual way; never did I think I’d have the life sentence of numerous chronic illnesses associated with my name and be in a position to doubt my ability to remember what ‘normal’ felt like.
I started having palpitations and feeling really faint when I stood up – I was referred to a cardiologist who ran first line tests such as 24-hour monitors and an echo. My heart valves were found to be bowed, and my heart rate unusually high; I was started on beta blockers but told not to worry as it wasn’t thought to be serious although there was a rare condition called ‘POTS’ in the back of the consultants mind, he didn’t think it would be that. He said that stress could be contributing and I have always been an anxious person. Despite this, I did research the condition, and the symptoms seemed to fit in with what I was experiencing but I tried to believe that I was going through a stressful period doing my A-Levels and it would pass.
I was experiencing other symptoms and it seemed like nothing was linked so I did start thinking it could all be explained by the stress I was going through. My bowel wasn’t really working so I was relying on different laxatives, and my bladder meant that weeing could take a lot of effort. I then started suffering hives on my skin that often appeared after events such as taking a bath or shower which continued after discontinuing many shampoos, conditioners, shower gels and soaps, meaning it could only be put down to contact with the water. I saw a dermatologist who put me on anti-histamines and gave me a steroid cream to use when the hives appeared.
I happened to mention my other bowel problems to my Crohn’s consultant who referred me to Professor Aziz whom diagnosed me with Ehlers-Danlos Syndrome with suspected POTS and MCAD secondary to that. It was a lot to take in and I spent a lot of time on the internet researching it and trying to understand what the diagnosis meant for me. I was then consumed by the revision that needed to be done to get through my A-Levels and so didn’t have any time to think about my ill-health apart from it frequently rearing it’s ugly head, getting in the way of my revision and exam timetables.
I was elated beyond what I can put into words in August 2015 when I got my A-Level results and, despite everything, had gained my place at Cambridge University; I’d always been academically driven and this was my absolute dream come true. I completed my first year and it was everything I’d imagined, I loved every second. However, the first year wasn’t easy with my health deteriorating and dealing with multiple admissions to Addenbrooke’s for various problems. I was waiting for lots of appointments and procedures but I saved all of these for the summer holidays so they didn’t interfere with my university life.
The first thing I was waiting for was a cystoscopy (a camera into my bladder), and Botox in my bladder to try to cease spasms and help it to work again, as during my year at Cambridge after sedation for a sigmoidoscopy for my Crohn’s, my bladder went into complete retention and so I had an indwelling catheter to empty it. The cystoscopy was due to be a day-case, but after the general anaesthetic I went into type 1 respiratory failure and three months later I was still admitted and so had to make the extremely difficult decision to intermit from university for a year. I say it was a decision, but the truth was I had no choice. Being in bed for three months, some of which was spent in Intensive Care, meant that I was badly de-conditioned and my POTS severely flared up, meaning I couldn’t even sit up without fainting. There wasn’t an established cardiology unit at the hospital where I was, and so I was transferred to King’s College Hospital for a further month where I was started on Ivabradine, which at the time was like a wonder drug and allowed me to get to a state to engage in some physio, and eventually be discharged home. However, this was in a wheelchair and with EDS and POTS symptoms that were much more advanced than when I went in. It was also discovered that my skin issues were due to Mast Cell Activation Disorder which I learnt also often occurs secondarily to EDS.
The year that followed was more difficult than I ever imagined, battling with my health and my condition deteriorating, as well as getting used to relying on a wheelchair which I hated people seeing me in. My Mum took the year off of work and was my full-time carer, but for many reasons after the 12 months she had to return, and my health wasn’t in a state to allow me to return to uni, and so I had to take a second year of intermission which absolutely shattered me. We had to organise carers for me, but still now there are things I’m too proud to let them do and have to wait for my Mum to finish work.
My health continues to decline; I’ve recently had an ileostomy for my bowel, but six months later I’m still suffering severe gastroparesis symptoms which has led to me being tube fed in the past. I’m waiting for many other operations including a sacral nerve stimulator for my bowel, a MPFL reconstruction and a septoplasty. I’m now at a stage where, begrudgingly, I’ve had to apply for a third year out of Cambridge with a hope to get back in October 2019. It’s been a relentless journey to say the least, but I’m stronger for my experiences which I regularly blog about at www.ellahollis.wordpress.com . I’m fortunate that despite the genetic component I’m the only one in my family with these diagnoses, but my family are there for me through everything and it impacts them just as much as it does me; they are my strength and for that I am eternally grateful.
alannahjaynesblog.com 
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