So as many of you know from my Facebook page, I started vomiting again at 10 weeks post op. For those of you who are not on Facebook, here’s where I’ve been and whats been happening !
I was admitted to my local hospital with severe dehydration in September and after a massive 15 WEEKS (!!) in hospital I have finally been discharged after being diagnosed with a condition called gastroparesis. This essentially means stomach paralysis… so my tummy is not emptying food or drink normally. It is not directly related to my ear but there’s a chance that because my SCD made me so sick & nauseous my vagus nerve (which controls digestion) got damaged, which is what can cause gastroparesis. In some cases it is idiopathic, therefore the cause is completely unknown and just happens. So, it could just be horribly bad luck that my stomach has decided to play up, but it seems like such a coincidence!.
Anyway, this new diagnosis has had a huge impact on my health. I’ve been in hospital for 15 weeks on IV fluids because my body became so dehydrated. I have also become quite malnourished because I can’t eat enough. So what’s being done about it? well there is sadly no cure for gastroparesis, so the treatment is all about finding the right way to manage it. Which is pretty complicated! I’ve been referred to an excellent Doctor in London at UCH. There is a specialist gastro team here who specialise in the treatment of gastroparesis. I’ve already had botox injections, balloon dilation and tried multiple drugs. So far, nothing has helped me much. I’m lucky enough to have got out of hospital on IV fluids, as the hospital have agreed to let me do them all by myself. So nice to be independent and even feel a bit like a nurse again ! Our house has been taken over with medical equipment but that’s ok. We know that this won’t be permanent. I have a special line in my arm, a PICC line, which runs straight up to the top bit of my heart.
If it’s not used properly, they can be pretty dangerous. So the doctors actually want me to have a more long term tube, called a PEG-J or Jej, which is a small tube that will go straight into my small intestine. This is all quite scary for me to take on board and I haven’t accepted that this is what I might need for the time being. There are still other drugs for me to try and other options in the future (surgical ones, which I want to avoid), so at the moment there is no huge rush to decide what is the best thing for me. I remain hopeful that things will improve, as this has happened in people with gastropareis. Making wishes and living in a bubble of hope. Always!!
Ear wise I am actually doing pretty good. The more I move the better I feel. Got a lot to do to get my balance back but I am so confident that it’s only going to get better and better. Especially now I can get back into a physio routine! I got to spend christmas at home, opening presents downstairs with my family. Last year, I couldn’t even get downstairs.
2015 has been the hardest year of my life but I still can’t believe how lucky I am to have such amazing support. I wouldn’t be where I am today without it. I’ve learnt to be so grateful for what I have and to just make the most of it. I am full of hope, despite the circumstances. I know there will be many challenges to get through but I cannot wait for what 2016 will bring. Getting on with my recovery, following my dreams & making happy, healthy memories with the people I love more than ever! Happy 2016 friends!