I managed 6 months out of hospital with my gut.
I ended up needing to back in again last week because I had terrible pain and reflux again. They are now saying it is constipation again and gas. My Dr thinks I may of been on the same medication for to long and we need to mix them up.
It is also believed a lot of people with charge have problems with the bunch of nerves that works with the gut and more research needs to be done into this area and not just the cranial nerves. Some even need a tube where stuff is flushed to help the bowels move. Some also need a hole stoma. I am hoping I won’t need this but it is possible I may in the future.
I think that more research needs to be done to really know or have any idea of what’s going on. I feel like some people are quick to look for the obvious and not go deeper in to see the hole picture. I am happy I have a great team that is willing to learn and try their best to help me. There may never be one answer but maybe many answers that all fit together like a puzzle. One day it will all come together and I hope it happens soon.