Snakes, ladders and stuff………

Think I have mentioned before that life with an enterocutaneous fistula is like a game of snakes and ladders, ups and downs, rollercoasters. I’ve done them all in the last three years.

Well this week is no exception. Firstly for new readers what is an enterocutaneous fistula. Well it’s a bloody nightmare that’s what it is but in medical terms it’s this –

An enterocutaneous fistula (ECF) is an abnormal connection that develops between the intestinal tract or stomach and the skin. As a result, contents of the stomach or intestines leak through to the skin. Most ECFs occur after bowel surgery.

Yes it’s gross. But Im lucky as most people with ECF cannot eat nor drink and believe me that is really hard. My particular fistula came after a hysterectomy, long story and covered earlier on. I wear a small bag over the hole and it’s mostly manageable but, well there are lots of buts ☹️

I ended my last update by telling you that I had some really bad pain. That was last Sunday, I awoke with it and it continued all day, all week. I did go to the planned event we had on the Sunday and everyone told me how well I looked. That really is lovely of them but it’s not always a reflection of how I feel. Plus pain, especially obstruction pain terrifies me. What is an obstruction you may wonder. Well for me it’s life threatening plus the most painful thing I’ve ever experienced including giving birth ( my baby was 8lb breech, no c-section in those days unless it was an emergency ) . So yes I have experienced pain and a bowel obstruction is the worst. Why life threatening ? Well I have an area in my bowel which is friable This is where the fistula is and so any pressure on the bowel could blow this open resulting in septic shock and possibly death. So yes when I get these agonising spasms I worry, a lot.

Bowel obstruction, also known as intestinal obstruction, is a mechanical or functional obstruction of the intestines which prevents the normal movement of the products of digestion. Either the small bowel or large bowel may be affected. Signs and symptoms include abdominal pain, vomiting, bloating and not passing gas. A serious medical / surgical emergency usually requiring hospital admission.

But I went to the do as planned as I didn’t feel unduly unwell and so I took painkillers and prayed. All went ok apart from the fact everyone got rather drunk and I ended up ferrying everyone home when all I wanted was for someone to look after ME. But hey ho I’m used to that. The week progressed and the pain gradually got better.

Our life is busy and on the Bank Holiday Monday I’d arranged a BBQ for my daughter and her family to welcome them home from holiday. They arrived at 6pm and all went well. I did all the accompaniments, hubby did the BBQ and I sipped on a protein drink too scared to eat as the pain gripped my side every so often. It was so lovely to have my daughter home, I feel safer when she is around. We had our granddaughter for the next two days and that was exhausting but she makes me smile and I love her so much. The rest of the week past ok apart from me going to a new hairdresser – it didn’t go well 🤣 she had a problem with her business partner and it all kicked off whilst I was there. She was in a state and I ended up spending my ‘ME’ time trying to advise her on what I would do ( she asked ) whilst secretly worrying the chemicals she had put on my hair was actually destroying it ! It was ok. Ish.

So today is Friday 1/6 /18. I had my blood test results and …….drum roll…….

They were actually quite good! Inflammatory markers were down and my blood count was up, no longer anaemic and I was actually quite pleased. Following the doctors I went to see my mother in the home and my Happy mood was replaced with sadness and tears, as she asked me ‘what happened, why am I here’. Absolutely breaks my heart but maybe that’s one for another day.

I decide to go out tonight to celebrate my nephews rugby achievements. It all went ok until my granddaughter fell off the stage and a child fell on top of her. She was hysterical and I couldn’t get to her as all the kids crowded round to have a look. I eventually managed to grab her and pick her up and she was breaking her little heart. Her mum and dad came to the rescue and we took her home. It was way past her bedtime, she was shattered and my daughter is 6 months pregnant so I had to stay to help out.

I got in about 10pm to find my fistula bag full of blood.

I have no idea why, what, or how. I feel ok, no chills or fever.

So I have a glass of wine and just hope for the best. I don’t know what else to do. Two years ago I’d be in a&e now but I have to just ride the storm I guess.

I suppose when you get this life changing devil enter your life you expect the cavalry to come and save you, but there is nothing. No help as it’s quite rare so no one really knows. Plus I look well so I feel no one believes me half the time plus it’s been going on so long, people get used to it. I don’t. I doubt I ever will.

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