I had my endocrine doctor appointment this morning. I'm super thankful for her. Even though she can't exactly pinpoint why I'm having so many issues, she was really determined to do something to help me feel better today.
She thought I didn't look too good. My stomach was really bothering me and I was beginning to get shaky and sweaty. So, we decided I should get IV fluids before I left the clinic. We had hoped to decrease the steroids again this week, but too much is going on to make that kind of a change right now. Unfortunately, after bragging about how great I was doing, the last few days have been totally unsuccessful in the pain management and sleeping department. She is back to thinking that the weird episodes are precipitated by my nervous system freaking out from when my pain gets out of control, and is complicated by my difficulty in staying hydrated. This makes some amount of sense, and Dr. Pain had suggested something similar.
The doctor was also concerned about my how frequently I'm having obstructions, the fact that I have not been eating well, and that I can't maintain a fluid balance. She is communicating with my GI doctor about the best way to handle this. She thinks I need surgery to fix these issues. The only problem is that surgery will cause more scar tissue, which could cause more obstructions in the future. But we all agree that something needs to change, as it's not healthy for me to continue just living with obstructions and dealing with them from home. So the next time this happens, I am supposed to check in to the hospital.
But - this afternoon, my stomach started feeling MUCH BETTER! I've been able to EAT real food! This hasn't happened for a few weeks, so I'm super-duper pumped! ;) I truly hope this means that the obstructions are gone for good and it will be clear sailing from here on out!
I also need to let the GI doctor know that it's time to add in something else for the pouchitis. It has really flared up again over the last few days with lots of bleeding. I know he wants me to increase my Humira dosage, but I'm hoping he'll agree to first try an antibiotic cocktail that worked in March. I'm hoping this will also calm down my joints and fever, which are flaring with the pouchitis.
The fluids were helpful, and brought me back from the brink of disaster... just kidding... ;) But I felt better, stopped shaking, and my blood pressure went up and heart rate went down after the IV, which is good.
Please pray that I can get the pain under control so I can sleep (and not freak out my nervous system, haha)! Also that I can start a good treatment for the pouchitis, and have a safe plan for staying hydrated and managing the obstructions.
God started convicting my heart yesterday about some stuff... lately I have been allowing my (admittedly frustrating) circumstances to define my mood and thoughts and reactions. I was thinking about Paul's reaction in Philippians 1. Paul was writing from prison. He was honest about the fact that he was in prison, and knew he was probably going to die soon. His attitude about his circumstances, however, related only to how they were allowing him to minister and spread the gospel. He was defined not by his situation, but by his God. May I strive to be the same way.