Thank you so much for all your prayers about the doctors... there has been considerable doctor drama. Please keep them up... I continue to hope for the day that I won't have to deal with doctors and the politics of hospitals.
GI Dr came and saw me on Thursday. He is truly wonderful and I'm very thankful for him and all his compatriots, who are fantastic. His take was that maybe I have a surgical problem, maybe I don't, but at any rate, clearly something is very wrong, and he wants to find out what it was and how to make me feel better. I can work with that! ;)
Most of the testing is for the nausea and inability to eat issue. Certainly my pain can cause nausea, as well as whatever's going on with the abscesses. They are also running tests to check for different infections right now. But basically they think that my problem is gastroparesis. They diagnosed me with that this summer when I had a test to see if I had an obstruction. Essentially, they think my stomach does not churn or empty properly - it's very slow. This can be caused by an infection, medication, or autoimmune issues. So there's lots of reasons why I might have it.
So, to treat it, they want me to stop all narcotic pain medicines...which I would love to be able to do, and I will try, but I take them because I'm IN PAIN! My pain has gone out of control several times this spring and summer and landed me in the hospital. It really does a number on my body and I feel like I've just gotten to a point where I am sleeping and functioning well with the pain. I don't wanna mess up my body now. But, we will have to find other things I can do to help with pain. I am not supposed to take NSAIDs (anti inflammatories like Advil) because of my UC history. So I'm not sure exactly how this will play out. Also, they want me to start a medicine that helps with stomach motility. I already took it for a while this summer, and it didn't do anything at all. I will try it again, but I have no confidence that it will actually help. I realize I sound super negative about all this, and I'm trying to have a good attitude. I want to give the treatments a fair shot, but I'm really worried about putting myself in a lot of pain... and that it won't actually help my nausea. And honestly, if I had to choose (which I may have to!), I'd rather never be able to eat than be in that much pain again.
The surgery people think the abscesses are causing the high white count and making me feel bad. I've been on IV antibiotics, which are starting to knock the WBCs down and making me feel less "run over." All the doctors (except for Dr. A) think that the abscesses are causing my abdominal pain, since it's the worst in the exact spot where the abscesses are. I continue to have some frustrations with Dr. A not taking me seriously and acting like I'm blowing stuff out of proportion... but I keep reminding myself that it's my body and I know when things aren't right. I also remind myself that he dismissed my pouchitis symptoms for three months before finally agreeing to scope me and then was shocked to see that I had terrible pouchitis.
I'm still bleeding, but it's been a little bit less. The scans show that my body has formed a fistula between one of the abscesses and my bottom, so it's not healing. Dr. A said that I could expect that to continue for 2-3 more MONTHS. He told me to stop freaking out if I'm bleeding a little bit. I told him I'm not freaking out; I've been bleeding internally since 2006! I'm just downright irritated that he's operated on me twice and still can't fix the bleeding problem. I know it's a completely different cause now, but it still feels annoying and uncomfortable and shouldn't be happening. He wants to give my body a chance to heal itself and not do more invasive stuff unless it's absolutely necessary. I absolutely agree about not doing invasive stuff unless needed, but I am NOT excited about putting up with this til Christmas at least.
I know I sound grouchy in this post... it's because I am. I feel like a jerk because I question the doctors and have stopped being okay with the mistakes that have been made. I know I didn't do anything sinful or wrong and it's all done without meanness, but I still feel bad. I'm trying to decide what the right attitude in all this should be. I know that in my heart, I am very angry and bitter about some of the stuff that's happened. I'm trying to forgive them from my heart. However, they need to be held accountable for their errors... Please pray that I will love them like Christ loves me and find the balance to unapologetically ask for the care I need. Life right now is like wrestling a barrel of monkeys, but hopefully things will get better... I feel like we're on the right track.