Thursday, May 27, 2010

Takedown: Postponed Until Further Notice

Dr A and I reunited again... bottom line is that any type of surgery is a no-go until I get to a much lower dosage of steroids. Dr A wants my body in top condition going into surgery, and let's face it, I'm not there yet. If all goes well with the steroid taper (which... honestly... it's been a pretty bumpy road so far), I will reach the required dosage in several months.

The reasoning for this is the high risk of complications from this surgery if you're on steroids. Dr A's main fear is that the intestine he sews together will split due my long-term steroid use (which causes thinning of the tissue and poor healing) and the inflammation in my pouch (inflamed tissue tends to NOT heal well, either). This would result in sepsis, and while death is gain for me, Dr A has his stats to think of. ;)

Unfortunately, even a small surgery to fix Squirt is not an option at this point, either, for those same reasons. Also, since I already have problems in my intestines from scar tissue, Dr A would really prefer to NOT do that additional surgery to fix Squirt, which will cause even more scar tissue. He did provide hope that things with the pouch might actually improve once I'm reconnected. And he said that we are nowhere near having to consider taking out the J pouch. So that's truly excellent news!

So, while this waiting to do surgery thing just prolongs my life kinda being "on hold," I have to admit I feel highly relieved to NOT have to go through another surgery this summer. I am a little bummed to have to keep dealing with Squirt prolapsing, but even that is still much, much better than dealing with UC. I'm truly thankful that God has made His will about doing surgery very clear right now - makes it easy for me to obey. ;)

I'd really appreciate continued prayers for relief from pain. The increased pain meds are helping sometimes, so I've had some good times, but I'm still having pretty severe pain, especially at night. So I'm not sleeping much, which is rough. I'm trying really hard to just lean on God and pray for others and think on verses I've memorized and stuff. I saw Dr Pain today, who encouraged my drug habits, haha, and also gave me a shot of toradol (my faaaaavorite!!! Yay. Now it doesn't hurt to breathe!), so I left feeling a bit better. Have I mentioned that he's awesome? He's awesome. I'm going to try this "rescue med" for when I have really bad days. It's basically a super duper strong anti-inflammatory. It can be toxic and can cause GI bleeding (which I obviously already have, so I have to be careful). To avoid the side effects but hopefully give me some relief, I'm allowed to take it once or twice a week - I get to choose when - to help me through the worst days when the narcotics aren't helping a ton. He also gave me some ideas for how to take my sleeping stuff -increasing the dosage and changing the timing. Hopefully these changes will add up to feeling and sleeping better!

I am so thankful today for my amazing siblings. ;) Yesterday was a HORRIBLE day with pain, but Joseph kept me busy watching silly YouTube videos, Sarah dragged me out of bed and took me out to dinner and ice cream, and Andrew gave me this awesome back rub that made me miraculously SLEEP last night. Goooo team! ;) Love them so much.

Hannah ;)

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