Are there different kinds of Gastroenterologist doctors ? Is there just your common regular Gastroenterologist and then a Gastroenterologist that specializes in different areas of your digestive system ?
I was only diagnosed with Crohn's 5 years ago by my current GI. I've had all of the normal testing done, such as colonoscopies, CT scans, stool samples, blood samples, etc, along the way. My treatment plans are pretty basic, but on par ( as far as I can tell.) My GI started with Humira and 6mp. After 3 years I had a flare. GI switched it up to Stelara, Budesonide, MTX and folic acid. The NP at my GI office took me off my Budesonide in March 2023 and I was sick for over a month and recently ended up in the Hospital. I had a CT scan at the Hospital, basically it says Crohn's in the terminal Ileum, which I already knew. The hospital started me on Prednisone. It's normal to have testing along the way and blood draws and stool samples. It's normal to change treatment plans when the first one didn't work. I've recently had my calprotectin checked and my Stelara levels checked. My regular 3 month visit is in a month. The only question I will have for my GI next month is why he feels I should go to the Mayo Clinic. Of course I am feeling better right now because of the Prednisone, but by the end of this month I will be back on my 9mg of Budesonide a day.Yes, there are definitely different kinds. Of course, there are pediatric and adult gastroenterologists. And among those, we have seen a GI who specialized in colon cancer (who promptly referred us to someone else), a pediatric GI who specialized in celiac disease and IBD, and two adult GIs who specialize in IBD (which are the ones you want to see, if possible) and several motility GIs, who specializes in motility disorders like Gastroparesis.
I saw on another thread that your GI thinks you should go to Mayo. That is not a bad thing - a GI who encourages you to get a second opinion is a good GI. It could also mean he or she is out of his/her depth. More complex cases of Crohn's need GIs that specialize in IBD and see LOTS of IBD patients. My daughter has severe inflammatory arthritis and honestly, we have seen several rheumatologists who have referred her to someone with more experience with her disease specifically (typically rheumatologists who research the type of arthritis she has) and have experience with refractory, hard to control inflammatory arthritis. There's no point in staying with a GI who can't help you enough. And if you can figure it out with insurance, Mayo is an excellent place to go for IBD.
But you can't be on Entocort forever. Yes, less is absorbed systemically, but it's still a steroid. You still risk adrenal insufficiency, which can be fatal. My daughter got that after a year of Entocort and then a Prednisone taper - very similar to your situation. Her ACTH and cortisol levels were so low that ACTH was not detected and cortisol was dangerously low. She had several very scary adrenal crises and had to be rushed to the hospital for hydrocortisone. She also had osteopenia. You could develop osteoporosis, avascular necrosis, diabetes, Cushing's syndrome etc.The only question I will have for my GI next month is why he feels I should go to the Mayo Clinic. Of course I am feeling better right now because of the Prednisone, but by the end of this month I will be back on my 9mg of Budesonide a day.
I will definitely do that.When you get the ambulance and hospital bill call them and tell them you need financial assistance.