I was desperate for relief, consulting a private Doctor in London who confirmed that I was receiving the right care via the NHS, they just didn’t often see cases as ‘bad as mine’. Due to the issues I had with skin tearing, I was paranoid about having a colonoscopy and wouldn’t let them do one, as nobody seemed to have a clue about hEDS. When I mentioned it, I was told ‘we only treat digestive issues’ which didn’t inspire confidence. 

Soon after this, I moved to Southampton General Hospital for all my care – I have to say it was the best decision I could’ve made. The IBD team there are SO much more equipped and because they’re researching the disease they have a lot more time to look into things.

I had a telephone appointment with my new consultant in January 2024 who took the time to go through things with me, and explained that if my biologics didn’t start to show that they were working in the next month, we’d have to consider our options…

Turns out we didn’t have to wait. By the end of January I came down with what I assumed was Norovirus. Between my usual poor immune system, being immunosurpressed from the biologics and how unwell I felt in general I wasn’t surprised. When it lasted more than a week, I did start to wonder what was going on. I rang my IBD team and they suggested that it might take me a bit longer than average to throw off and to hang on until day 10.  

I did, and my symptoms got worse and worse. I couldn’t eat or drink, I was passing out and I felt awful. On 22nd February 2024 I went to A&E at Southampton Hospital where I was quickly triaged and it was noticed that my heart rate was 170bpm. I was immediately taken to resus, where I was told I was about to have a heart attack unless I took some medication to correct the irregular rhythm – Not what I was expecting! 

I ended up having to have three different procedures, none of which works to reset the rhythm. One of which was an awful medication which cause the top and bottom parts of your heart to sync back up – not until it had however made your heart stop. I had to have three lots and it truly felt awful.  In the end, however, the wonderful team found a medication that worked and my heart was controlled. 

I was then admitted to the gastroenterology team’s care, in which I remained an inpatient for the next month. 

During this time, I agreed to have two sigmoidoscopy’s as I was so poorly – neither of which caused any issues with tearing, thanks to how amazing my team were – and both which showed the terrible state to which my colon was in.  Several emergency attempts were made to fix the flare, including a brand-new medication called Upadacitinib which was trialled on me. 

My conditioned worsened however, and I ended up unable to absorb anything at all, including the tablets. IV steroids were trialled but caused my skin quality to worsen, so they had to be stopped. I lost 10% of my total body weight and my options decreased.