How things are now ...

Well, thankfully there has been some progression of the constipation and she finally started going again on sunday (not in any regularity, but anything is better than nothing) and she has had some relief in periods - though is still straining a lot of the time. The anaesthetist was off yesterday so called me back today and we had a chat about the various potential problems Alyssa presents with:

The first being that none of the medications she is on should really cause constipation - yet almost everything seems to have that effect with Alyssa. Which obviously makes it more thought-evoking as to why she has this reaction, and what we can actually about it.

The second being that it is a catch 22 with the gabapentin:

If increased in dosage, she becomes constipated (even if only increased slightly) and strains even more than she is doing now - yet unproductively. She is then sore and needs paracetamol and/or ibuprofen on top ... but they do actually help with constipation pain, but it's not exactly ideal having to give all three.
If reduced in dosage, the "cramping" returns very quickly and she screams pretty much constantly. None of the normally prescribed painkillers help this, which is why she was put on the gabapentin in the first place.

And the third thing being that we don't really know enough about her neurophysiology (what's going on in her brain) to try other medications, or what side effects they're going to cause. That gabapentin is the safest of the medications we can try, so are pretty much stuck with it for the time being.

The anaesthetist doesn't want to change things if possible, because he has to take a kind of longer term look at Alyssa, and not alter her medications due to her seemingly constant change in symptom severity. Which I completely respect - the more medications we have to change, the more questions we end up with as to what helped or hindered the problem. Plus, we have no way to know how even drugs which have helped others will actually affect Alyssa, being that her nervous system doesn't react to most drugs like everyone else. I think he has a very balanced approach to it all (granted, he doesn't have to deal with it all every day ! - but he is very conscious of that fact), and in order to be helpful, he really has to maintain a certain degree of detachment. So he's suggested we try some simple alternatives - sort of going back to basics and a non-medical approach.

He's recommended I get some peppermint water ... and give Alyssa some before each meal. He says it's something that's been used for decades, but seems to work well and that it is used quite often after gut surgery etc. He thinks it will also reduce the amount of abdominal gas Alyssa has, which also makes her very comfortable. She strains even when trying to pass this, and is extremely distressed by it so the peppermint water is definitely worth a try. The anaesth is also puzzled by her need to "strain" when she has diarrhoea, constipation and from gas ... and is wondering if some of it isn't learned behaviour. I understand and respect his logic there, but personally do not feel she has learned it - unless he means simply from the point of view that she does not actually know how hard she has to push when she feels she needs the toilet (ie because she does not feel things normally), therefore has learned to strain to do either. She is constantly complaining her tum (or bum!) is sore when she is straining or passing a motion, but doesn't complain it's sore at any other time. She will actually tell me that she does not have a sore tummy if I ask at any other time, so I am sure it is painful when she says it is.

Have no idea if the peppermint water will do anything at all, but at least it's not another medication and shouldn't make her any worse. Time will tell if it helps ...