Hi all. Just thought I would give a brief update. Saw the GI a couple of weeks ago; she doesn't believe it is pouchitis, rather a dysfunctional pouch or possibly Irritable Pouch Syndrome?! I had a severe case of sepsis after pouch creation and the thinking is the pouch was most likely damaged. It took a while for me to brave takedown (20 months) and between that time I was constantly unwell.
I had an MRI pouchogram last week (an experience I never EVER want to repeat again - the pain was excruciating) and the results are pending.
There is no improvement whatsoever (thank you all so much for your fantastic advice/comfort).
Bottomline I suppose is going back to an ileostomy; I'm not sad about it, in fact I just want to live again.
I looked up IPS and there doesn't seem to be a lot on the condition. 1 thing that did come up was that the condition is linked with depression. That annoyed me a bit as I was absolutely fine prior to takedown and only became a down AFTER the reversal due to my current symptoms!
The GI also suggested a possible course of Amtriptilyn (probably not spelt correctly) but as I have epilepsy and my medication contraindicates, it's a no no. I think the reason for suggesting this is something to do with neurotransmitters etc. Funnily enough, the drug is also for depression!
Ill update when I get the results. ��