Labelling Crohn's as a "relapsing-remitting" disease

I had several years of Crohn's symptoms and "remission" without realizing what it was. I was finally diagnosed when the symptoms got worse and didn't go away. I persisted with the doctor until they did all the tests and came up with an answer. I think that my disease DID progress, in the sense that my body finally stopped "recovering" by itself and I had to do something different. My GI also said to me that now I am over the latest flare and on the maintenance medication my "remission" (ie. no bleeding, limited abdominal pain, some energy, reasonable iron count, no fever etc.) is as good as I'm going to get. I don't like that he said this, but it is something I have come to accept.

I think that once the disease is fully triggered we cannot go back to full remission. It is in this sense a chronic if not progressive disease. I will never be "cured" or find a magic pill that returns me to "normal", and my LDTI insurance company accepted this fact as justification for paying me benefits for working half time. Of course after two years they have now said that their job is done and I need to find a new job that is better for someone in my condition to earn more money!!

Defining remission has come up before on this site. I think it is misleading for doctors to say that Crohn's has periods of "remission", because generally we have to beat it into remission with heavy medications and each person has a different experience of remission. The reality is that I don't go a day without being reminded of the DD and all we can really do is control symptoms, not get rid of the disease.

It is interesting that many of us are also diagnosed with IBS, which doctors perhaps use to explain our symptoms when their tests show no signs of Crohn's. I really wonder about this. I wonder whether this is really still our Crohn's in some way.

@WriterMum - Interesting you should say that about IBS. There's been a discussion about that exact subject just really recently. An author made the claim that up to 50% of people with Crohn's may have IBS and it sparked off a few heated replies. The thread should be on page 2 or 3 by now if you want to take a look. I posted in it so I won't repeat my opinions here.

I think that once the disease is fully triggered we cannot go back to full remission. It is in this sense a chronic if not progressive disease. I will never be "cured" or find a magic pill that returns me to "normal"

Agreed 100%. Well, I'm agreed with every word you wrote, really.

I'd like to write more but I'm feeling a bit dizzy and have an annoying pain behind the eyes, so it's getting too hard to concentrate. I would also like to ask you a bit about enteral nutrition, since that seems to be your speciality, but I would make a new topic about it anyway.

And now I'm off to lie down and give my aching eyes a rest from staring at a glaring screen :-/