Who am I

My name is Mark and I am to most Doctors an interesting case, why you ask because I have an abnormal number of autoimmune conditions, the blog title maybe gave you a clue. My immune journey started when I was about 14, I was 6'1" and about 133lbs. I looked like a skeleton my mum thought I might have celiac disease because it ran in the family. Little did we know what that set of blood tests would start, I didn't have celiac disease but I had an abnormal liver enzyme results at a level that worried my GP and got me referred to a gastroenterologist.

Now after lots of blood tests, ultrasounds, biopsy and other scans. The Doctors eliminated everything they could test for but where sure it was Autoimmune Hepatitis a diagnosis of exclusion, some of you might think that is a bad enough condition to have but a year later aged 15 I developed gastric issues having to spend a week in the hospital every 3-4 months. So back to blood tests, scopes  and biopsies and soon(ish) we had a diagnosis of Ulcerative Colitis over the next 7 years we tried a load of treatments steroids, azathioprine, Cellcept, foam enemas, Mesalazine and at the end an IV infusion that took a lot of paperwork on my doctors end but that I have no idea what it was before at the tender age of 22 I had to have a Subtotal Colectomy do to being refractory to treatment. This was the first time I ever thought I was going to die, prior to my surgery I phoned my parents from my bedside phone begging them to get the surgeon to see me because I was losing liters of blood out my bum (Or at least it seemed so) the surgeon was going to do the surgery on Monday (2 days)  I told him I would not make it to that and he decided to do it as an emergency operation the next day, this brought its own issues, the stoma nurse didn't work weekends so it was left to the surgeon to mark where my stoma should be placed and as I later discovered he marked it too low.

That said the colectomy started a stable time in my medical life, a time where for 2 whole years I was not in the hospital, a glorious and happy time for me. A time where I had no visits to the hospital and by all measures a happy time, I thought things might be turning for me but fate decided otherwise.It was the start of my issues with my stoma and over the last 6 years I have had 3 refashions and 1 stoma relocation as well as a few bowl twists which resulted in a few, week or more stays in the hospital. But the start of the of my issues with my stoma coincided with a new immune issue Immune ThrombocytoPenia aka ITP. Which is where your body produces antibodies against platelets which leads to them being destroyed in the spleen and liver. I went through the normal treatment options high dose steroids, IV IGg, Revolade and Romiplostim. For the first few months, my platelet count sat between 0-20  thousand when the normal is between 150-400 thousand, this caused me to have one or two-hour long nosebleeds and blood in my urine,  the first six weeks following my diagnosis was one week in the hospital and one week out. This was the scariest of my diagnosis because every time I would get petechia I would think I would have one of my hour long bleeds or if I had a nosebleed I would worry that it might not stop. I went through a lot of treatments the last being Romiplostim which didn't seem to be working I was raised and raise my dose to the maximum so they prepared rituximab but when I was in the hospital getting prepared for the severe suppressing of my immune system to be told the blood drawn while placing the cannula came back with a platelet count of 95,000 a count I had not had since before my ITP had activated, they repeated the test with the same results. So I was sent home and followed up on it has not been a condition without its ups and downs but I am and have been for a long time now stable, it was one of the few times when the light at the end of my medical journey was not an oncoming train.

ITP was the start of my second wave of immune issues as over the last 5 years I have developed autoimmune neutropenia, lymphocytopenia and sclerosing cholangitis. While I may not have a lot of neutrophils or Lymphocytes I am blessed to not catch more infections than I had before but when I catch one it can quickly overwhelm me and put me in hospital. This means that whenever I feel the start of an infection I have to get to my Dr and get the antibiotics.

In my next post, I will talk about my time in ICU which started in late December 2015 and had me waking up in the middle of January 2016 and the long journey of recovery and the issues that came from it