A few days ago we were moved from the hellish conditions of the emergency corridor (I was tempted to say it felt like we were in Dante’s inferno but it was bloody freezing) upstairs to the relatively heavenly conditions of the gastric ward.

We share a light and airy room with 4 other patients and their carers. We have a clean bathroom between us (no light or toilet seat but hey whose counting), lights we can turn out at night and apart from the odd alarm from the various monitors in the room, we can sleep relatively peacefully. I was given another plastic chair but make myself up a bed on the floor, using the covers we brought with us to keep out the cold in the emergency corridor as padding, at least I’m lying down.

Neu had a colonoscopy, the preparation for which left him mortified but thankfully he was sedated for the actual exam. As the sedative was put into the drip already in his arm, he didn’t realise he was being given it and when he was wheeled back out of the examination room, told me in rather surprised terms that he had fallen asleep and only woken because the doctor was asking if he was alright, he didn’t believe me when I said he’d had the colonoscopy and had been away for more than an hour.

The colonoscopy showed no alterations to his intestines, everything inside is normal, no sign of Crohns as previously thought but there are several points were his intestines are being constricted by something on the outside.

His doctors tell us that he has, what they refer to as, a collection or mass of infected matter in his peritoneal cavity which is pressing onto his intestines and, just as when you stand on a hose pipe only a small amount of water can pass through the remaining space, so it is with the contents of his intestines. The pain he was experiencing was his intestines desperately trying to force things along.

Another CT scan showed that this collection which he had back in September (when we were told it was loose liquid in the peritoneal cavity and probably a residue from his peritoneal dialysis) is full of infected matter and has almost doubled in size, now over 10cm in diameter. It is this mass which is pressing on his intestines and causing all the trouble.

What is not yet clear to the doctors is where the infected mass stems from. So far they have been inclined to say they believe his peritonitis back in May and June was inadequately treated and the infection returned but they have not ruled out other possibilities, including that all this stems from a burst appendix, which has always been my gut feeling, no pun intended.

I am pushing hard for them to investigate this possibility further and thankfully because I have kept notes about every step of Neu’s treatment since he was first diagnosed back in 2009, I could show them exactly what antibiotics he’d been given and for how long, proving to them that if anything he had a longer than usual course. That the intense pain Neu felt right at the start, pain that came and went, was then over taken by a constant pain from peritonitis. The pain from peritonitis went after a few days of antibiotic treatment but the other pain was still coming and going until it was overtaken again by the pain from his intestines.

The doctors agree that appendicitis is a possibility, it could have swelled and gone down a couple of times before it finally burst, accounting for the bouts of intense pain that came and went over a few days while his dialysis liquid remained clear (it is usually cloudy when infected) followed by an extremely intense bout of pain after which his dialysis liquid became cloudy.

Neu is now on antibiotics to reduce the size of the collection / mass while the gastric team wait for the surgical team and other specialists to examine him and decide what to do next.

Neu is painfully thin having lost over 11 kilos when he really didn’t have anything to loose in the first place. The doctors are trying to find a balance between getting nutrition into him without aggravating his intestines and setting the pain off again. An x-ray yesterday showed his intestines are still distended in some areas, constricted in others but it’s hard for him to gain weight on a diet of soup (which he hates) herb tea and a glucose drip, though I have to say he looks much better than he did.

Hopefully on Monday we will see yet more doctors and get some definite answers but at least while we’re waiting, we’re waiting in more comfortable surroundings.

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