Hey Crohnies and Lucky Coiners,
I’m sure as all of you know with scars/burns/ostomys how hard it is to feel comfortable sometimes. I certainly didn’t think that after getting my stoma id be so uncomfortable in my clothes, my appearance, going out and in pretty much every other way possible.
Recently I’ve spent a lot of time in mourning, not only for Duncan and the life he could have led but also the life I could have lived had my Crohn’s been milder or my surgery going to plan or having no allergies to the bags. I know that family and friends read this too so I want to just emphasise how tough it is to watch everyone else carry on in their lives while I not only have lost my best friend but also not be happy about my life. I do spend my days faking a smile or trying to get on with things but with every single leak (4 so far today), pain and tear it gets harder to keep going.
I spend my days no longer loving dressing up and going out to see my friends or be active but instead stay at home, spending as much time in pjs and hiding away as possible. Uni is even becoming basically impossible with how scared I am of leaks. I was in for one hour this morning and I once again leaked everywhere twice and only just avoided being covered in it.
I feel like I’m no longer the person I used to be and I am definitely much more negative with every “there’s nothing more we can do” from consultants, stoma nurses and GP’s that I’m now resigned to things being how they are and possibly this being as good as it gets.
At this point I wish I knew how to try and get back to some of the old me, but I can’t see that girl ever coming back as the last few months I’ve been led to think “what kind of a life is this?” And to be honest I’m still trying to figure that out.
I thought I’d keep you all up to date, especially since I’ve now been staying home so often I mostly stay in pjs and don’t bother with wearing actual clothes so I don’t have many new items to blog about just now.
This is basically the life of someone with an “invisible illness”, you’d never guess we were any different unless we told you so I suppose one good thing about me being like this and having this platform means that I can share my experiences with you all and raise awareness of not only Crohn’s and IBD but all those other people who have “something to hide”.