Let’s catch up, shall we?

I haven’t done a ‘Life Lately‘ posts since I was having my wound dressed each day. That feels like forever ago but it has only been a matter on weeks. So, let’s catch up on everything medical that’s happened since my Vedolizumab at the end of May.

A general overview of June can be found here.

The whole of June can be split into two camps – feeling well enough when waking up that I feel productive and motivated, and then feeling unwell on waking up that I have to spent the day recovering from whatever has happened and then wondering if it’ll happen again the next morning too.

I’ll admit, some days, they were just straight write offs. I did nothing productive but rest and recover at home. Those days have been greatly appreciated because in hindsight I’ve realise how tough and long recovery is when you are also living with a chronic illness. Everything feels like it takes 150% of your energy and takes twice, if not thrice, as long as other people who are fit and healthy.

With that being said, I have had some really good moments in June.

  • When my stoma finally stopped producing all its liquid output, I began feeling more confident with it.
  • One wound check appointment, a week or so after Vedolizumab, we found my wound to only be a cm deep and then a week later still, just needing to heal on the top surface layer of skin. However, that does not mean it hasn’t been painful or sore – it most definitely has – and I’ve been looking after the oozing and the bleeding so that it does not result in anything nasty. This final layer of skin is very delicate and friable, so it requires as much attention as any other part of this wound healing process.
  • I met with my surgeon about this time too, we agree on some terms to return to work but only when I felt ready.
  • I’ve battled a month long viral infection and a blocked ear, as well as a chesty cough that has been very debilitating – they possibly think I might be abit asthmatic, so that’s something new eh?

Coming into July, my IBD feels really stable. I’ve had a couple of bouts of abdominal pain but I can really put this down to not chewing well enough, or eating food which are abit troublesome for my insides in general. Along with that, I’ve been more proactive with battling dehydration and I really try hard to get my fluids in throughout the day. I’d rather pee every hour than risk any of the symptoms of dehydration and most importantly, a hospital admission again. I spent the 23rd / 24th of June in MAU because I was dehydrated that my bowel was spasming. Three litres of fluids and 24 hrs later, I came home and that’s my lesson learnt this summer, for sure.

Being half way through this month, into the second half of 2019; it feels like there should be more achieved but I am quite happy with how things are going right now.

It’s taken a long time to get my head around how long I’ve been away from work, away from advocacy, away from writing, away from being social. Most of this stems from the surgery and its complications but it also comes from the mental recovery from knowing that my bag is permanent now.

It always felt permanent before the stump was removed, but now, anatomically, I am ‘stuck’ this way for life.

While I wish there was some room to go back, there was no guarantee a pouch would even be viable given the severity of my Crohn’s disease. It’s not that I couldn’t have tried one if I felt it necessary; but the long term effectiveness was low, negatives more costly than the positives and my bag never really felt awful to deal with.  My Crohn’s seems pretty stable at the moment, but the effectiveness of the Vedolizumab can feel sub therapeutic at times. I’d love to just feel more comfortable and confident about my body and my health.

Comfortable with my health and confident with my body, that is what I mean and want to achieve. It won’t be easy or quick but, the next chapter for sure.

 

Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram