I was diagnosed around 20 years ago. I was only the 7th case my specialist had ever diagnosed. so it was a little rare at that time. I had had symptoms for 10 years or so and had not gone to a specialist. So, now, I have had the symptoms for about 40 years. My doctor said in 2015 that it would burn itself out. It didn’t. There was a time when I was so much in pain that I was wishing they would just remove my intestines. lol Sometimes it is still that bad. Do we really need to have to take meds forever for this ?