Thursday, June 6, 2013


For everyone who didn't see it on Facebook yesterday, we FINALLY have news! And praise God, as long as a couple tests come back normal, we have the best case scenario with both diseases!

Firstly, with my PSC (my liver), they opened up the stricture in the duct and my doctor doesn't anticipate me needing anything else done for possibly the next decade. Wow! I will still need to get an MRCP (An MRI, but they check for different things) done in 6 months and blood tests done every 6 months to make sure my levels are still okay, but I can definitely do that! He said that on average patients who have PSC need a liver transplant about 15 years into their disease, but he does have patients who have one stricture opened and never need anything else done. Obviously we have no idea what it will be like for me, but this is good news - especially since my levels are all normal and he doesn't anticipate me needing anything else done with that for a while!

Secondly (and most importantly), I am having my colon removed on June 14th. Yes, you read that right. I am having major surgery in just 8 days! My UC itself is actually mild, but because I've had this disease so long, I'm so young, and I do have some concerning areas that could turn cancerous later on, my doctors recommended surgery. The surgeon that we talked to was going to give us names of doctors in Denver who could do the surgery, but while we're here in Minnesota, I would much, much rather have it done at Mayo. Just so everyone knows, this is the only reason it's getting done so quickly. I don't want anyone to be worried about why it's moving so quickly - since we're moving in just 6 weeks, I will need all that time to recover.

Here is the WONDERFUL NEWS, though! My disease is labelled "rectal sparing," which means the last 12 inches of my colon are untouched by my disease. This means even though my colon will mostly be removed, I will not need a second surgery OR an ostomy bag! This surgery will also not affect my fertility AT ALL. Praise God! This is exactly the kind of news that we wanted to hear! If I needed to have surgery, this is the surgery we wanted to have. The only clincher is that because part of my colon will still be there, I will continue to be on the medications I'm on now, and I will need to still have yearly colonoscopies just to make sure everything's okay. That's definitely a bummer since I was hoping to just be done with it, but I'm willing to do those things if I don't have to deal with the daily affects of the disease and I can possibly still have kids.

So here's what's going to happen: Eric and I are going down to Rochester the night before so I can rest and prep for the procedure (3 times in three months.... I got this), and then we'll find out the night before what time my surgery will be at. I guess they have to get outpatient procedures scheduled first, and then they'll know the night before what time they can do my surgery. After that, I will spend about 5 days in the hospital. It may be more or less, depending on how good I feel (Mayo likes to get people of the hospital quickly, so if I'm feeling good enough they won't see a reason to keep me longer - which is awesome). Once I get home, my recovery time will be about 4-6 weeks. 6 weeks is the absolute maximum, though, which is really nice.

This means though that I won't be able to help Eric with any packing or cleaning when we move. So this is a message to all our Minnesota friends: If you can, please offer to help Eric with anything he needs. I feel so bad that there's going to be so much on his plate. I know that he loves me and he is fine with doing whatever needs to be done, but I also know that this is going to be hard on him. I wish I could help out with packing, cleaning, and moving - I'll do what I can when I'm feeling well enough - but unfortunately this is the way things go so we can just get my surgery out of the way. If you can't help please don't feel obligated, but I know that we could definitely use it since there's going to be a lot going on.

Thank you all so much for your prayers and support. We really appreciate it, and we will continue to keep you updated on everything that's going on! And you can expect more blogs from me since my computer is going to be my only source of entertainment for a while.... :)

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