Denise,
What about a schedule? Would your H ever go for that?

At one point, I asked my H what kind of frequency he thought we should strive for. He said 'twice a week'. So then I steered the conversation towards, Ok so you are agreeing that we will ML twice per week, barring any catastrophes?

It worked too!

I know that your H will say that it is dependent on his illness and that is perfectly understandable but I would not be afraid to bring up the fact that there are other things that he does (pleasure pursuits) that do not get the ax b/c of the Crohn's and really, H, what is the difference here?

In other words, you might have to really press him to get him to agree on some ground rules. It would be weird for a guy who has always had an HD to now be living by 'rules' with his wife...downright humiliating in fact, but it can no longer be avoided can it? You are so unhappy with the current situation that it is time that the both of you stopped pretending that things are as they were.
It's time for a new mr. and mrs. niecie to take center stage!

Good luck,
Honeypot