Fistula 1 – Me a big fat zero

So following on from my fairly good week up a mountain, things came tumbling down, just like Jill who went up the hill to get some water.

I finished my last blog by saying I was experiencing a worrying amount of pain. I didn’t go the doctors as believe me there is no point unless –

I’ve got a temperature / chills or

A really worrying obvious symptom

As I’ve learnt that when you have a fistula, providing you are vertical, breathing and conscious you are actually ‘doing fine’ and no one wants to know as there is nothing they can do.

Anyway, Sunday started good and we decided to go out for the day. We live in a beautiful part of the world and I love the sea which is close by. However my husband being the man he is, cant go local as that’s boring, he wanted to go miles away. I agreed as it’s easier. Half way there I feel unwell, call in a shop to go to the loo and blood! Quite a lot of it in my fistula bag. My pulse is normal, I don’t have a temperature but this looks alarming. My husband is none too impressed at my news and insists I’m fine. That word again, fine. How I hate that word.

We go to the hospital and Mr. Angry ( My husband ) huffs and puffs at the prospect of spending hours here. I was seen fairly quickly by a triage doctor who said I needed to have further tests and I’d done the right thing. I was then called into see s more senior doctor who listened to my story and shook his head in disbelief, he apologised that this had happened as he stared at my stomach in disbelief. He was really lovely and said he respected me as I had been through more that most and yet still could smile. Mr. Angry remained quiet for once. The doctor organised X-rays, and a cannula was out into my arm, this unnerved me slightly as I really didn’t want to be kept in. I was sent back to the waiting area and ate a Milky Way. This is how ridiculous my situation is, I can have really worrying symptoms yet not actually feel ill …….but maybe that’s to come.

I was called back to see a surgeon, I was now a bit worried as whenever the word surgeon was mentioned, A sense of panic ran through me. He was a young Jamaican doctor who also grimaced at my story and the state of my abdomen. You can tell however they all love a fistula, it’s rare and they probably don’t get to see many. Another doctor joined the party to have a look. However, He said how well I looked and reassured me that all my bloods were good, he didn’t feel there was anything going on below the surface but I was so complex he wanted to examine me which he did. I was discharged with the standard advice of ‘come back if you get worse’. I don’t find that particularly reassuring but again I have no choice.

We drive home in silence, another day ruined (his words). As we approach home I realise the cannula was still in my arm. I could take it out myself but think better of it so back to hospital we go again………lead balloon comes to mind.

I was glad I’d gone to A&E and that my tests were ok but I have no idea how to manage this and try to have any sort of life as in my case, the two don’t really mix. Many of my fistula friends are now single and I completely understand why. I find it very difficult dealing with my husband’s constant disappointment as well as my own sadness. My needs are far less than his, my goal posts lower and that’s fine but he is just bored, fed up and resentful.

Let’s see what this new week brings………..

One thought on “Fistula 1 – Me a big fat zero

  1. I’m so sorry… I can only imagine how tough that’s got to be, but you did the right thing getting checked out and I’m glad at least they don’t think there’s anything worrying going on, but there were obvious things not quite right. I’m sure Mr Angry is frustrated in part at not being able to do anything more to help you. Please stay strong and I hope the rest of the week is better than what you’ve been through so far. Sending love…
    Caz x


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