Sorry for the lack of updates. I don’t think I quite understood what I was about to go through when I composed my last post.
I’ve largely been continuously awake since Wedneday night trying to drink enough water to remain hydrated. In general, I was failing. Output from my stoma was significantly exceeding anything that I could drink, leaving nothing for the rest of my body, resulting in a gradual backwards slide.
Thursday I did pretty well, as I was largely well hydrated to start with, and had a great visit from my wife and kids. Even though I was feeling a bit under the weather when they arrived, it’s amazing the impact that the sight of them had on me, and I was able to be much more outwardly cheerful and positive while they were here than I actually felt. Of course, when they left, I slid the opposite way, and felt very “down”, and in the end went back to bed mid-evening.
I remember very little of Friday beyond being asked to show the nursing staff that I could change my own ileostomy bag; a no-brainer for anyone who can follow instructions. I do remember that my pain-relief was low at the time (ie, it hurt when I changed the bag) but not a great deal else. The nurses must have been satisfied though, as I’ve been signed off as competent to self-manage my stoma, which is one less barrier to eventually leaving hospital.
My wife and kids visited again, but this time I was unable to keep up the level of pretence; I could see that they were worried at my appearance, but at the same time, I didn’t have the reserves left to do anything about it.
Another early night.
Saturday morning saw a visit from a registrar (a “consultant in waiting”) who was providing the weekend cover for the ward. He suggested some slight changes to my treatment, but basically emphasised the need to drink more water to remain hydrated. Which was not helpful, given my experiences to that point. This was probably my lowest point do date, as I genuinely began to question my ability to ever drink enough to keep up with my stoma, which was producing 3 litres a day at that point.
Fortunately my consultant decided to pay a visit early on Saturday afternoon, and spent a busy 20 minutes checking me out, reversing the decisions of the registrar, and the previous few days. So the latest diagnosis is that I probably have a partial blockage of the ileostomy. This is unlikely to be a physical blockage, but instead where part of the bowel has not properly restarted after the surgery. Apparently the symptoms are that whatever I drink will go straight out the ileostomy; the more I drink, the more stoma output I will produce – a classic vicious circle, and hence my inability to get anywhere with the old treatment regime.
So, my new regime is to go back onto IV fluids, with minimal oral water and food (“only sipping and nibbling”, as he put it!) and spend as much time as possible relaxing, giving the bowel time to naturally recover, without putting me under any more stress. Which sounded great from where I was lying.
Unfortunately, this required that I have a new cannular inserted, and amongst the chaos of the day ward, it seemed impossible to get my cannular replaced, an IV line connected, and the doctors and nurses to recognise that my treatment programme had changed, and therefore to stop trying to force me to drink ever more water. For the first time, I came very close to really losing my temper with the people who are trying to care for me – not that that would have probably made much difference 😦
In the end, the day shift switched over to the night shift, who were more experienced, and less over-stretched, and I got my cannular/IV line about 7 hours after it was prescribed, which seems like a scary delay to me. However, I’ve now had 12 hours on IV fluids, had my catheter removed, the output from my stoma appears to have dropped marginally (let’s hope its the start of a trend) and I’m starting to produce urine again. Oh, and I got several hours uninterrupted sleep. Life seems like it might be getting better again.