Yes, I think I have a better idea of what you mean now.
I'm in Australia, which has a system similar to your NHS, so deal with similar problems... but I think yours are more severe than mine.
You said that you had an IBD nurse and I presume you have a gastro and a gp as well. Do you have any other medical professionals involved in your care? I ask this because it sounds to me as if you need a counsellor who is skilled in dealing with people who have chronic illnesses. You might also benefit from having an advocate too, though I don't know if they are easy to find there (they aren't here).
I completely understand the types of answers you're seeking. I spent years, frustrated, seeking answers to similar questions myself... and was never given them. I think doctors tend to deal with the problem in front of them, and don't bother talking about
long-term prognoses. Also, I think they are reluctant to commit (and endanger?) themselves by communicating a certain vision of your future, as they could appear negligent if something went wrong and your long-term health was worse than they had described.
I also understand your wish to establish a personal baseline, but I'm not sure if that will be good for you. We do have many, many people who suffered severe relapses very soon after surgery. It *may* be that your doctors are wanting to start you on the Azathioprine immediately because they suspect you may relapse very soon, and are anxious to prevent it. Or they may have a different reason... and I think they have a duty to communicate that reason, so that you can make an informed decision.
On a practical level, how do you communicate your needs, wishes and questions with your doctors and IBD nurse? Perhaps we can help you formulate a strategy to get your point across more effectively.
Keep hanging in there,
Co-Moderator Crohn's Forum. New meds thread