Not so flaming so far. Weather has been wet but I’ve been OK. I say that with baited breath as I’m never sure how I am. Living with a fistula is an ever changing enigma. I apologise to my followers as I realise this is more of a journal than a blog and probably quite boring compared to most other blogs. But it helps me in some ways and so I will continue for now.
Some dates –
14 weeks since the op
13 weeks since the respiratory arrest
11 weeks out of ICU
8 weeks since tube came out
Off TPN 6 weeks
Been home 4 weeks and a bit
Sometimes I think I’m improving and the fistula is getting better. It now looks like several burns – I could probably get away with a dressing but I’m not confident so I still wear a little bag over the area. The pain is pretty constant and depending on what I’m doing, governs if I take pain killers or not. I have my granddaughter this afternoon and we will go out so I will need pain relief. The pain is like a band at the base of my stomach, not pleasant and worse when I move around.
I saw a consultant a few days ago about my elevated liver function tests and gallbladder problems. He depressed me. Before this happened ( two and a bit years since the hysterectomy that caused all of this) I never had gallstones or abnormal bloods, infact I never had anything apart from a suspect mass in my pelvis which has been there for years. I was fairly fit, robust and the ‘go to’ person for my famiky. Yes i had problems but I had a life too, one that I found fulfilling. Since the disastrous surgeries, I’ve had a few episodes of what I assume is gallbladder pain but more worryingly is the abnormal liver function tests. The consultant had intended to do a procedure called ERCP, as described here –
ERCP is a procedure that enables your physician to examine the pancreatic and bile ducts. A bendable, lighted tube (endoscope) about the thickness of your index finger is placed through your mouth and into your stomach and first part of the small intestine (duodenum). The physician will make a cut at the end of the bile duct to widen it, in the hope any future gall stones will pass through without issue. There is a small element of risk and a less than 1% chance of serious complications.
But when he saw me and heard about what had happened in March, he felt I was too much of a risk. He said the procedure carried a small chance of complications but based on my history he didn’t want me to be the one percent where serious issues occurs with me ending up back in intensive care. He said if I had any more attacks to get back in touch with him. I felt he was annoyed that my colorectal surgeon had referred me so soon after my respiratory failure. He did sort of then change his mind and told me to go back in 6 weeks when I will have recovered further and he will review me. I felt deflated, not because he wouldn’t do the procedure but the fact I was suddenly too risky – I was fine before that hysterectomy – the surgeons decided it would be safe to operate and remove the suspect mass, it quite clearly wasn’t and now I’m labelled as ‘very complex’ and ‘too risky’ which is depressing. Coupled with no regular GP to help me through all of this means I feel very isolated and alone. I can’t talk to my family about it as they think I’m doing ok and don’t want me to have any more surgery. I suppose I just miss the old me and don’t really like the new me. The new me has no spark and no stamina, everything is an effort – maybe it’s depression but I don’t really want to be pill popping. I need a fresh start like moving house but my husband is totally opposed. He is probably right as happiness comes from within, moving house will change nothing apart from empty my bank account and fill the stress bucket.
I’m off on a duck hunt now with my little granddaughter 🐤🐦🐤🐦