October 2016

October seemed to be abit up and down, in many different ways.

At the end of September I was dealing with a quite persistant bout of peristomal skin rash. I was seeing my stoma nurse every week at her clinic to make sure I had been looking ater my skin, managing my new bag and routine, whilst also sorting me out with enough supplies to get me through any problems in the next seven days or so. It took quite a while to go away; my stoma changed size again, I gained much needed weight and I wasn’t using the correct removal system for a couple changes.. so that was swifty resolved by the end of the second week. 

I started  my infusions of Vedolizumab at the start of the month. I was having one on week 0, then week 2 and finally week 6, before going onto a eight weekly cycle of infusions. As I knew what to expect – having gone through it almost exactly 12 months previously – it was pretty straight forward: Bloods the end of the prior week, hydrate like crazy the day before, cannulation and a hour in the infusion clinic. All have been straight forward without any problems; I’m just waiting to see my own consultant and surgeon next month, but I’m pretty much looked after, not been forgotten about since my surgery.. I suppose its hard not to.

It was half term last week; me and my mom finally got to use our spa day together! I wasn’t allowed to have my back massage – I wasn’t too keen on having it beforehand, but they advised that since surgery, they couldn’t risk it, good, very sensisble! – but we did use the swimming pool and hot tub; which was exciting and terrifying! I’ve missed being in water so much; I brought a new bikini but I didn’t want to hide my scars and bag, and being in so much water was relaxing and weird in equal measure. I had my usual bag on, extra elastic tape to secure my bag to my skin and was generally careful, it all went well! I want to go back. It was such a wonderful feeling being able to show off my battle wounds. To try and make a start towards making ostomies more normal and not taboo. It was a very tiring day.

Since then, its been abit low. I’ve had lots of time to write, but I’ve had so many bag leaks because I’ve not been hydrating properly. Its led to sleepless nights, paranoia, increase in coffee and feeling exhausted; which I’ve been saying is because its been almost the month since my last lot of Vedo, but I’m sure its not all down to that. It can’t be; Vedo doesn’t work that quick and wouldn’t deplet my energy like an anti-TNF therapy. I know its due to my feelings over leaking in bed or in public again. I’m strong enough – physically and mentally – to change my bag and sort myself out, but it knocks my confidence.

So, I’m due to see the stoma nurse in a couple days, to see if there is anything I haven’t tried yet to help me out; I’d had about 6-7 weeks of good, strong bag changes. It’s very disappointing, its now making me more angry than upset. That can be dangerous.

Next month we have my final loading infusion of Vedolizumab to look forward to. Also seeing my consultant for the firs time since I was admitted back in mid-August. Then onto seeing my surgeon too; maybe he will discharge me? I doubt it, I won’t feel comfortable about that yet.

In the mist of all that, me and my boyfriend are taking a long weekend away, down to Cornwall before he starts his new job; which means he is away Monday to Friday until next May training. It’s good change for us, positive change for our future together, but it hurts me. I’ve grown to be very dependent on him whilst I’ve been ill, but now I will have to become independent again. I hope it doesn’t pull us away from each other too much. But I am looking forward to using my new lease on ‘life’ to see what I can as just me, again. It’s been such a long time since it has been just me…

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