FINALLY Home From the Hospital!

Hey, everyone!

For those of you who haven't seen my barrage of Facebook posts and Tweets, I'm finally home after a grueling last few days! Here's how it went down (I'll leave out the gory details):

I had surgery on Friday morning (the 14th). I checked in at 6 am, but I don't think my actual surgery started until about 10 am. I was scheduled to be in for 4 1/2 hours, but everything went so smoothly they were done in 2 1/2! That was such a huge praise, because even though I still had to deal with a lot of issues afterwards, I would've had to deal with even more issues the longer I was under anesthesia.

I started eating solid foods that evening (which was CRAZY), and even though a couple of my organs (my bladder, in particular) had some trouble waking up, I did really well for the most part while I was still at Mayo. They released me on the 16th because I was doing so well, but unfortunately things started going downhill from there.

We're not really sure what did it - it may have been the "trauma" from an hour and a half drive home, it may have been that I was released too early, it may have been that I ate solid foods too early... we're not really sure. When I got home I almost immediately started feeling nauseated, but I hoped it would go away. Unfortunately we weren't given any nausea medication, so there wasn't a whole lot we could do to stop it. Late Sunday night my nausea became so extreme that I started vomiting and had to be rushed to the ER. Let me tell you... For someone who has never had an experience in the ER like that before... It was scary. They pumped me full of meds and did X-Rays and CT-Scans right away.

They found out that what was left of my colon hadn't really woken up yet, so when I was eating food it wasn't going anywhere (thus it came back up). They were very strict about not letting me have anything to eat or drink on Monday, but on Tuesday morning they bumped me to clear liquids, then full liquids, and then on Wednesday morning they let me have solid food. Since I was able to keep everything down, they finally released me Wednesday afternoon! Since then, I've been doing really well.

Right now I'm actually not on any pain medications - my doctor at our local hospital told me that narcotics slow the system down which means I could end up having another episode like I had on Sunday night. As soon as he said that I decided it would be nothing but Tylenol for me! I haven't needed anything at all yet though, which is a huge praise. The main thing that gets to me now is the anxiety and the exhaustion.

All that being said, here are some things I could use some prayer for:

1. Anxiety - Ever since the surgery (and especially after Sunday night), I've had a lot of trouble sleeping due to anxiety. When I was at the hospital they gave me medications to help me sleep, but now that I'm home I really want to take as few meds as possible. I only slept about 2 hours last night and even though I know sleep will come eventually, I've never had to deal with anxiety like this before and it's really frustrating. Even when I feel calm my heart feels like it's racing, and I'm really wanting that to go away so I can relax and be able to sleep.

2. Strength - Getting home yesterday and showering for the first time in 6 days was extremely exhausting for me. Today I just feel dead on my feet. I'm in a good mood, but my muscles are so tired and don't really want to move. I know that this is all part of the process, but it's definitely frustrating especially when I'm dealing with not sleeping and my muscles not wanting to move.

3. Patience - Part of the reason I'm not taking medications is because I know I will get better faster the less time I lean on those things in order to feel better. I know there are many things I cannot do for a long time (ex: I'm not allowed to lift more than 5-10 pounds for at least 6 weeks), but I want to feel more able to do normal things like... walk. Haha :) So far I really do feel pretty good, but I still get very tired very quickly (I know I'm only 6 days out from surgery and I'm doing really well, but it's still frustrating).

4. Moving - Now that my surgery is out of the way, it's time for Eric and I to really focus on moving. I know I really won't be able to help with the actual process very much, but please pray for volunteers (or please volunteer if you can) to help us pack and clean when we need to do those things. Please also pray that Eric is hired out in CO soon so we don't have to worry about that anymore. I know he will be hired somewhere, but the waiting period is definitely stressful.

Thank you all SO much for your prayers, encouragement, and incredible support on this journey! We so appreciate it, and I feel so overwhelmed by all the flowers, cards, texts, messages, etc. that I've received. Eric and I are so blessed to know you all!

PS - We received the pathology report from my surgery yesterday and there was NO sign of cancer in my colon, which is a huge praise!

Please also let me know if you have any questions or want further explanations on anything - even though I'm not on meds I'm so tired that I'm sure I've left some things out. Thanks, friends! <3

BIG NEWS!!

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.... :)