On the 13th of March, I started to develop an intermittent fever with shivering, which was treated with antibiotics. By the 15th March 2024, I had sepsis and my bowel perforated, resulting in excruciating pain. I was rushed into emergency surgery on this day in the evening, coming around to having had my colon removed and a stoma. 

Here is where ‘Merlin’ the stoma enters the story, along with ‘Bruno’ my mucus fistula.  My colon was so damaged when the surgeon got to it, it had very little blood flow and was ulcerated throughout.  As a result, it couldn’t be entirely removed. I still have 9.8 inches connected to my rectum, which comes out of my lower fistula. This is to allow it to continue omitting what it needs to, as it was in such a state it wasn’t going to be able to be left internally like usually would happen. 

Because the surgery was an emergency, I had to have a midline incision – not ideal as an hEDS sufferer, as my muscle strength is now worse than before. I woke up with more tubes and wires than I care to remember, including a central line in my neck. 

Later, I was given a PICC line (a permanent cannula) which was a blessing, as my skin did not cope well with having so many cannulas placed while I was in hospital. I had more than 35 placed in 28 days. 

I finally left the hospital after two weeks of recovery, and then began the wider recovery at home. Outside of the getting my strength back, I feel that my recovery was quite positive and within a couple of months, there was a noticeable change in how much more well I was from a GI perspective.