A few weeks after my first stint in hospital for Crohn’s disease I passed out whilst taking the dog for a walk. Fortunately, I was with my family and could sense something wasn’t right as I puffed my way up a fairly steep hill. My poor little mum somehow managed to catch my fall as I toppled onto the front lawn of a neighbour’s house.
I was only out for about 20 seconds, and after getting home, getting some fluids into me and having a bit of a lie down, I felt okay. I didn’t really think much of it, but the next day decided it was best to see a doctor, just to be safe.
The GP did some blood tests and a few hours later I received an urgent message saying I had to get to the hospital, IMMEDIATELY!
It turned out I’d had a Pulmonary Embolism (PE).
A PE “is a blockage of an artery in the lungs by a substance that has travelled from elsewhere in the body through the bloodstream … usually from a blood clot in the leg that travels to the lung” – thanks Wiki! https://en.wikipedia.org/wiki/Pulmonary_embolism
Several scans later found deep vein thrombosis (DVT) in my right leg. A blood clot in my leg then travelled through my bloodstream to my lungs, causing the PE (or more accurately, bi-lateral multiple pulmonary emboli), and causing me to pass out. I was very lucky that it didn’t cause any serious damage, or death.
After a few nights in hospital I was sent home with a referral to a haematologist and strict instructions to take blood thinning medication, but with few answers as to what had caused the PE.
I have since heard that blood clots are not uncommon for someone with IBD and have read studies suggesting that IBD may even raise blood clot risk **
The haematologist deemed my PE as “unprovoked”. He did not believe it was solely due to my recent 2-week sedentary hospital stay, or the Crohn’s. He could not give a definitive cause, or say for sure that it wouldn’t happen again. I had to immediately stop taking the contraceptive pill (forever) and would be on blood thinning medication for at least 12 months.
What did this all mean?
- Regular blood tests to monitor INR levels (basically a measure of how long it takes blood to clot)
- Ensure the INR was within a certain range to prevent another PE
- Controlling the INR by:
- Managing the dose of blood thinning medication (Warfarin)
- Watching my diet which can interfere with the INR and how the medication works (particularly foods high in Vitamin K which includes lots of green veggies)
- Cutting out alcohol (more on this topic in my next blog post)
- Other medications – adding or changing any other Crohn’s meds wreaked havoc on the INR. I was on and off antibiotics and weaning off prednisone, so at some points had my INR tested every other day. I felt like a human pin cushion!
On top of this I also had a large anal abscess and multiple fistulas which were being curetted by my colorectal surgeon every 4 weeks. Obviously you don’t want your blood to be too thin when having procedures like this. This meant switching between blood thinning meds to injecting myself with Clexane (another type of anticoagulant to prevent DVT) whenever I was due for day surgery. I honestly couldn’t keep track!
Fortunately, after 12 months of this I had repeat scans to my legs and lungs which confirmed the clots had cleared. There was scarring to my lungs, but it was deemed safe for me to cease the blood thinning medication. I will always have to use Clexane if I am in hospital for a prolonged period or before travelling on any long haul flights, but other than that I could go back to relative “normality”!
Phew! It was a pretty full on 12 months, with one thing impacting another, which impacted another! A never ending spiral! I was struggling enough at the time trying to manage my Crohn’s, let alone having to add blood clots to the mix!
I would be interested to hear from anyone else who’s experienced blood clots with their IBD. Please feel free to share your stories in the comments.