And it all comes crashing down ……

A bad few days. Really bad. On Sunday I felt the best I’d felt all year. So much so I felt confident enough to think about a holiday and even ventured up the attic to look at some Christmas stuff . When it came to our evening meal, I decided to have a more normal size portion which included vegetables. I’ve been told my blood is slightly deficient in zinc which is found in green veg amongst other things, plus as zinc facilitates healing , I thought I’d give it a go. Now what happened may have absolutely nothing to do with what I ate. This is the problem with fistula, it’s a demon with a mind of its own. I awoke at 5am with stomach cramps which is always very bad news. If anyone reading has had an obstruction then I’m sure you will agree it’s the worse pain ever, worse than giving birth. The cramps weren’t the worse I’ve ever had but bad enough and then followed severe diahorea. Now any pressure on the bowel will make the fistula worse. The best way to describe it is think of your bowel as a long coiled hosepipe. In my case, deep down in the coils is a tiny hole. If you were to stand on the hosepipe and stop the flow, the water would gush out of any available hole. So in my case it forces stuff our of the fistula. That’s what happened and it totally devastates me. So from having a really good couple of weeks, I was and am back to square one. Again. So so so demoralising and I’m not sure I’m strong enough to keep on getting knocked. I just don’t have the right mindset for this, I’m not positive, I am worrier and whilst I have a brilliant family, they don’t understand. I’m sure my daughter would prefer me here as I am than not here, or even here in any shape or form. I can talk to her but I don’t want to burden her – it should be the happiest time of her life, she has a beautiful little girl and a lovely partner, my situation makes her really sad. My husband is just fed up of it all so he has no patience or understanding. He feels I should be dealing with it better than I am.

The blockage cleared quite quickly but left me with a nagging pulling pain behind my stoma. I know I have a hernia but it’s never ever bothered me, I think something has shifted though and maybe the cause of my current problems. As it happened I was due to see my consultant the next day. So we travelled to Cardiff on a cold drizzly Tuesday and waited our turn. He is now a Professor, very nice and always listens. He does have a knack however of turning everything round to the simple fact that I am doing well. I try and explain that yes compared to other fistula patients, I probably am doing ok . But compared to the old me, I’m broken. There is no comparison, I don’t recognise myself sometimes. I explained about the hernia and he said most stoma patients have hernias, it will settle down. I explained about the blockage and he said I’d probably overdone it with the veg. He will never agree about the mess I feel I’m in although he admits his words are probably sounding hollow as to him I am well but to me I’m ruined. He wanted me to have some blood tests but I really think only because he cannot offer me anything else. There are no drugs and surgery is out of the question, it could kill me. He hasn’t ruled it out forever but certainly not at the moment, maybe next year ………. i feel very dependant on him though and just feel without him, no one would care as there is so little that can be done.  I feel invisible.

So we left, slightly fed up and drove home with the radio breaking the silence. But life goes on. I arrive home to messages from the nursing home saying my mother was home from hospital and very agitated. Everyone asks online how I got on but it’s hard to explain that a fistula rarely gets better, I will have good times and not so good times. I fret over the Christmas shopping I haven’t done, the to-do lists seem endless.

I have a glass of wine, went to bed, slept ok. Woke this morning to pain. My stoma is working so that’s a massive bonus. Will just have to hope this all settles down and that I can gather some strength and positivity from somewhere x

One thought on “And it all comes crashing down ……

  1. Oh my lovely, I’m so sorry… I wish I could make things better, or even take away these bad days. I know I can’t really say anything to help or make things better, but I want you to know I care. I’d also say that, while I’m sure she’d appreciate you thinking of her and not wanting to be a ‘burden’, that your daughter would want you to confide in her a little, share with her what’s going on. Your situation and what you’ve been dealing with will make her sad (but it would simply be cruel and unimaginable if it didn’t!) but she may feel equally sad to think you’ve struggled and not told her. Anyway, just my opinion. Sending huge hugs and my very best wishes your way xxxxxx


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