Oh, Hi! It's me. Long time, no talk! Well, allow me to fill you in! It's been a LONG road since I last wrote. It exhausts me just thinking about the last 8 months or so, but lets see if I can keep it somewhat condensed as I unfold our journey for you...
Over the last year or so, Danny's health started gradually declining. He was diagnosed with Crohns/Ulcerative Colitis in 2008. He had been in remission when we met - on medications that completely diminished any and all symptoms. A few months later, there was a lapse in his insurance, and therefore a lapse on the meds, causing his symptoms to return. These 'flare-ups' were uncontrollable and started getting worse and worse. After our sweet and simple backyard wedding reception last July, it became worse. We made an appointment with a specialist up at OHSU, but it took nearly 5 months to get in - our appointment ended up being at the end of October. In the meantime, we had our belated honeymoon to Maui booked for the first part of October, so we decided to go and hope for the best. The weather was perfect, the accommodations were fantastic, but between bathroom runs, his constant pain, and the entire computer system at the boutique crashing our very first day there, it wasn't all rest and relaxation. I hope we get the chance to take that trip over again someday.
Our appointment with the specialist at OHSU was October 22nd. She looked at his blood work and determined he had very few pharmaceutical options left, and he needed to seriously start contemplating surgery. In the meantime, she quadrupled his medication dose in an attempt to shock his system back into remission. It failed miserable. By the end of November he was down to 128 pounds and sleeping 20 hours a day. We were in the Salem Hospital ER on November 29th - followed by a blood transfusion, antibiotics, and fluids. He had been bleeding so much from his colon over the last year that he had lost almost half of his body's blood volume. Half! He was exhausted, couldn't eat, and was in such excruciating pain, sleep was the only thing to help. By December 4th, we were transferred up to OHSU and he had a total colectomy on December 5th. They removed all five feet of his colon. Gone. He came out of surgery with a colostomy bag to divert his stool into a pouch off his abdomen while his body healed. This surgery was the first of 3. I took the "Go Team" approach. I was in it to win it, while constantly reminding myself God promises to never give us more than we can bear - or was it, "what doesn't kill you makes you stronger"...? Either way, I was there to fill the shoes of "world's most amazing, supportive wife-nurse EVER"...I figure if we can get through this our very first year of marriage, we can conquer anything.
December and January were a blur...I think Christmas was in there somewhere and New Years too - oh, and I turned 30 - all while being a step-mom to Tyler and managing and running a business through the holiday season. I don't remember much - but that's my coping mechanism of choice. However, I must take this time to insert mention of my wonderful employee, Jill. I am lucky to have someone so fantastic who stepped up and took care of things while I was in the hospital with Danny. She was amazing and I am so so grateful for her and her willingness to be there. She was also in charge when the computer system crashed while we were in Maui. This poor girl...haha. She handled everything with 'fight' and grace. THANK YOU, Jill. Thank you to Karen and Alyssa too, who also stepped in for a couple of days with very little notice and helped with the store. I am blessed to have these ladies in my life and to know the shop was in good hands during my unexpected absence.
As far as Danny's recovery from the first surgery went, we had some long days and nights in there, but we made it through. It was a blessing in disguise because the pathology report on his colon came back that he has/had Ulcerative Colitis (UC) and NOT Crohns. UC is the lesser of two evils, being that it is contained to the colon, so with the removal of the colon came the removal of the disease (for the most part). Within just a week or two, I could tell I was going to get my husband back. The piercing pain and bleeding he had grown accustomed to ceased to exist. Praise God! He could eat normally again. He had energy, he gained a quick 15 pounds, the color returned to his cheeks, life returned to his eyes, and overall, he was the walking picture of "healthy"...just adapting to his "new normal" with the colostomy bag - which we found out would be very temporary. It didn't matter to me though. I would take a healthy husband with a colostomy bag ANY day over a sick husband without one...and this is coming from the girl who cleaned up a HUGE mess at 3am because her handsome husband was still getting used to his new apparatus and forgot he had already unlatched his bag (in the bathroom, thank goodness) when he got up to empty it in the middle of the night. Yeah - I'm still cashing in foot rubs for that one ;)
Fast forward to March 6th, and we headed back up to OHSU for a surgical check-in of 5:30am. Surgery began at 8:33am. I retain odd details. Anyway, the colo-rectal team built him a new colon. It's really quite amazing to think about. Basically, they took the end of his existing small intestine and made what is called a J-Pouch. They take the intestine, fold it into a J shape, and basically sew the touching sides together making a pouch that will act in place of his colon. Think about it like if you took a garden hose and folded a kink into it. Then they cut an opening at the bottom of the pouch and attach it to what's left of his rectum. Sorry to get so specific, but this has been my world for the past several months. Over time, this pouch will take on the function of the colon. The pouch is much smaller than a regular colon, but it will allow him to function 100% internally again, without the use of a colostomy bag. He calls it his "robo-colon"...haha. The J-Pouch has been created and everything has been reattached internally, but he will have the bag another 6-8 weeks while this new connection heals. In May he will go in for the third and final surgery. This surgery will be what they call the "take-down" - where they remove the colostomy bag, sew up the small intestine that has been diverted to his abdomen through a stoma (the opening they made leading into the bag since December), and sew him up so he can actually start using his robo-colon. This recovery will be shorter, but more challenging in the sense that his body must get over the shock of having a new job to learn. His new J-Pouch must learn the new and somewhat foreign task and take over the colon's previous job. The doctor said the first few weeks will be the worst of the adjustment, but within 18-24 months, his body will have learned its new digestive process and at that point he'll function how he can expect to function the rest of his life. He'll have a few gnarly scars to show for it, but thank God modern medicine has come this far and he can be "normal" again.
So, with this update at it sits now, we are 2/3 the way through this journey and it has been quite an interesting and challenging excursion for us both - and it's not over yet. I know God is taking care of us through this and we have a lot of friends and family praying for Danny. I believe although this first year of marriage presented some unexpected hurdles, that God can use it for the best and we can be an example to other couples going through hardships. I believe God will use this experience in our lives to strengthen our love and make a solid foundation on which to spend the next several decades of our lives together.
On a positive side note: Danny was promoted just before his medical leave with the second surgery, so when he returns to work on April 8th, he will return to a new upper management position as COACH! I'm so proud of you, babe!! God always provides.
For those of you that have been praying for us, I thank you. It gave me great peace to know that there were people out there lifting us up. Thank you to those of you who sent texts and emails checking in through all of this. They kept me going! I know I've been a little MIA from certain aspects of my life - family, friends, babies, friends with new babies (there were a LOT of them the past several months)...I'm sorry for any neglect you've felt. Hopefully you have a better understanding now of this consuming journey and where my energy has been focused. I love you all and will resume Auntie Em duties as soon as possible!
Stay tuned for updates leading up to the third surgery. I will try and keep the posts shorter now that everyone is caught up to date :)
The beautiful view of Mt Hood from our hospital room on the 14th floor!
Night view of Portland. We had the best room in the entire hospital!
Waiting for discharge the day we left...
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