Update from Wednesday's Dr appointments

Just wanted to give everyone a quick update on my Dr appts yesterday. Bless Lisa for driving my butt around town ALL day - on her anniversary, no less. Thank you so much Lis! It was great to catch up with you! And I wasn't even wearing my pj's this time!

First I saw the pain management Dr. He is right where all my MN drs are - we will slowly wean off the meds, but it will take quite a while (6-12 months). He gave me prescriptions for what I'm currently taking, and a goal to reduce my morphine from 5 times a day to 4 times a day. He's really comforting. I know I'm on a lot of narcotics, and I want to get off of them, but many folks don't really understand why I need them now that my pancreas (cause of all the pain) is gone. I can't say I really know. I am experiencing pain still. Not panky pain, thank God - that type is debilitating. It's probably from being completely gutted and then pieced back together. So there's surgical pain and learned pain since I had it for so long. My surgeons have all said it takes 6-12 months to wean off the painkillers. My goal is to do that much more quickly, but at least this Dr isn't calling me a druggie and just trying to yank my meds immediately. He wants to see me back in 2 weeks to assess where we're at. I'm fine with that, though it's a pain because he's 45 minutes away - uggh.

Then I saw my primary. They were basically worthless. She said that I was "too complicated" now and did not want to be part of my care team. Now, I know I'm complicated, but she's been with me since I first got sick, so she knows my history. And I understand that I am complicated. Most doctors will never care for a patient who has had the TP-IAT because there are only a few hundred in the whole US who have had this done. But my MN drs are more than willing to discuss and explain everything, and be part of my care team. But my PCP just isn't interested in that. Dr. Dunn wants some simple blood tests - CBC, electrolytes, and liver panel. My PCP won't even write the order for the blood tests. It's not like it's anything complicated. Anyway, I'm really frustrated with that, and now I have to find a new PCP who is willing to take me on. Just what I needed.

Otherwise, things are going well here. The kids have been wonderful about not coming in and waking me up, or their massive nitpicking fights where somebody has to tattle on the other. Monday I felt pretty good and thought I got a lot done, though it sure didn't look like I had done anything. (I still have 4 huge bags to unpack.) Tuesday wasn't so hot. I slept most of the day. Wednesday was very busy. Lisa picked me up at 9:30 (of course, I was running late because after walking the kids to the bus stop, I came home and fell asleep (not on purpose), so I was scrambling to get out the door.) Then we spent the day at Dr appts, with lunch at Applebee's in the middle. It has been SO LONG since I've been in a restaurant, socializing with friends. That felt really, really good! She dropped me back at home around 4 pm, and I was exhausted! I laid down to take a brief nap, and woke up at 10:30 pm. Oops! The whole family is sound asleep now. I didn't hear anything! Thank you Lewy, for taking care of everything. You are fabulous!

Next steps - I go see the endocrinologist next week. My PCP said that he will not manage my insulin because my condition is "difficult". I said that it was just monitoring my blood sugars and insulin. Isn't that what an endo does? That's like, his job, isn't it? So, we'll see. I'm praying that I don't need to find a new PCP and an endo! Hopefully, he cooperates. The MN team wants to see patients at 3, 6, and 12 months post surgery, then annually after that. They are fine with local drs just ordering the tests so I don't have to travel for those. My plan was to go out at 6 and 12 months, but do the 3 month follow-up here. Now I'm having second thoughts. I think I will book a flight to go out there for my 3 mo. I don't need to screw around with these Tucson quacks.

Finally - the enemas. I've been doing them every day. Yesterday, it seemed to flush a lot more out, so hopefully I can get things moving. As I said before, I typically wouldn't discuss this, but if it helps someone considering this surgery, then that's my whole goal. I asked myself if it really would be helpful, as I've read about a lot of complications that I have not experienced. So I didn't really need that information. But, my doctors have told me that this is very common in TP-IAT patients. So, if you get a sudden increase in pain and nausea for no real reason, it might just be that you are full of crap, lol! I messed around for 2 weeks before I knew anything, so just consider this as a possible contributor.
Also, my Dr gave me some samples of amitiza. I just started taking them, so I'll have to update with a thumbs up or thumbs down!