It’s been a week since my last post. A mix of reasons for that; I’ve been keeping myself busy with other stuff (which is good) and I’ve been fairly unwell (not so good) and not felt like writing any updates.
The not being well manifested itself as a slight increase in pelvic pain, and a significant step backwards in terms of my “frequency and urgency” issues. I suspect that this was directly attributable to the gastrografin enema test that I had last Monday evening, as the symptoms set in about 24 hours afterwards, and are only now fading (slowly) away.
The good news is that the pain never got too bad, so I never needed to go back onto the painkillers. However, I had a fairly unpleasant time trying to balance my Loperamide dose; in the end I gave up, and dramatically raised the dose so the problems stopped; I’m now slowly dropping the dose back down again, and coping with the side effects of the higher dose. Hopefully, in combination with me recovering from the upset of the test, a more normal service will be resumed in the next few days.
And speaking of the next few days, my surgeon has now seen the test results, and requested another meeting, which will be on Monday the 15th. I suppose at that point he will have some recommendations on how he thinks I should move forward.
However, I’ve reached the point where I’d like to better understand the risk/benefit trade-off of any further treatments in a lot more detail before doing anything more. Prior to this last test I was starting to reach the point where I could see that I could manage my symptoms well enough to probably return to work, and only suffer from occasional discomfort, which I could probably manage with simple paracetamol. If the surgeon can make a dramatic step improvement over that quality of life for me then I’m certainly interested; but perhaps not if that requires another extensive period on a temporary ileostomy, or risks me ending up on a permanent colostomy.
This treatment has ground me down to the point where I’ll now happily settle for “good enough” and the rest of my life back. Which is not something that I’d have expected to hear myself saying only a year ago, when I would have been much more focused on perfection. This disease changes you in ways you’d never expect.