Take down surgery - Two Weeks Post Op

WARNING: This post contains lots of info about my surgeries, bodily fluids, needles, etc.  If that's not your thing, I just wanted to warn you ahead of time so you aren't caught off guard. Thanks!  And just for the record, years ago, I would have never written down a lot of this for others to read. It's just so humbling and gross. Haha.  But, if it can help or encourage one other person, then it's worth it. I've been encouraged and grateful for the people who have gone before me and shared their experiences, and I've been thankful that God has given me some opportunities to share my story with others as well.  God wastes nothing. I'm thankful for that. With that being said, here you go...

We arrived in Rochester on Monday, December 17th in time for early morning appointments at Mayo on Tuesday. My first appointment was a fluroscopic imaging of my intestines and J-pouch. They injected a contrast up my rear end (while I was awake) using an enema type process and then took pictures of my Jpouch to make sure it held the contrast ok and didn’t leak. This was a pretty uncomfortable procedure (so I thought), and I was glad I didn’t know what was coming when I checked in that morning. Then, I did some lab work and we met with my surgery team. My pouch had healed perfectly, so we were good to go!

Surgery #3 was takedown/removal of my ileostomy and connecting my small intestines back together to be able to utilize my new J-pouch.

On the day of surgery, we checked in and I was literally swept away to the OR by a team of nurses. The procedure ahead of me was quicker than they anticipated so I literally had no wait at all getting back into the OR. Just like with the first two surgeries, they gave me a spinal (similar to a c-section) so that they could use less general anesthesia. That process is never fun but it really wasn’t that bad in the grand scheme of things.

Ready for surgery.  No waiting around this time. This was about 5 minutes after I was checked in (which is unheard of for a hospital/medical setting.  Mayo is incredible!

I woke up feeling great in the recovery room and had to hang out for a little bit before they took me up to my room. That night I took a couple of walks (pushing my IV pole and catheter) and even ate some dinner. It seemed like this was going to be the best and easiest recovery so far.

The next afternoon my dad and I were walking and I just had this wave of nausea come over me and I remember telling my dad to hurry up and get a trash can. I continued with nausea and vomiting through that day and night. I also spiked a 103° fever and my white blood count was significantly elevated so they did some labs and a CT scan (which was horrible lying flat because that made me want to throw up more). I continued trying to walk to wake up my bowels and get them working but it just didn’t help much. Everything in your gut—food, mucus, fluids—either go down the way they are supposed to—or if your gut isn’t awake—it all comes back up. They put in an NG tube to suck out all the fluids in my stomach. That was such a horrible experience to have something down my throat and placing it was very uncomfortable. Lots of gagging and I still felt nauseous even with it in....which is why you choose to put one in in the first place....to get rid of the nausea and vomiting. So when they place it, then they send you down for an X-ray to make sure it’s in the right spot of your stomach. They changed the placement of mine two more times while we were in the hospital (so much gagging) and did xrays both times. Just going in the wheelchair down to imaging made me nauseous and uncomfortable. But I was holding out hope that the NG tube was helping. It was pulling out tons of bile and fluids from my tummy, but I still was nauseous and continued to throw up even with it in.

So thankful for my mom's support and love. I do not take it for granted!

 

Love these people!

My best friend from high school and college, Lori, and her husband Jeff and kiddos came from Iowa to visit.  It was sooooo special to see them and for our kiddos to meet.  We love you, Schmitts!!!

Thank you, Van Wyks, for stopping to see me!  It was soooo good to see you all and made our day! We love you!

With my surgery on Wednesday the 18th, we had hoped to be discharged by the weekend and home by Christmas. It was extremely disappointing to spend Christmas in the hospital, but who knew that Santa delivered gifts to little boys whose mommies are in the hospital?! It sure gave me a new perspective and such compassion for families that spend large chunks of time in the hospital and especially those with chronically sick kiddos.

And I have to say...my nurses and surgeon team were AMAZING. They comforted me by saying that 20% of patients that have colorectal surgeries have a “sleepy bowel” that just takes a while to wake back up and work quickly. We now look back with even more gratitude that I was spared from nausea and vomiting during the first two surgeries. Thank you, Lord.

By Christmas Eve, they removed my tube because it just wasn’t pulling much out of my stomach so we knew my gut had to be starting to wake up. Even though I was still a little nauseous, I was able to keep small amounts of food down and I was starting to go to the bathroom more.  Christmas Day was the turning point.  I was still pretty nauseous but at least things were moving in the right direction, and I was going #2 more and more.  We were discharged late morning.  (Matt ran out on Christmas Eve to pick up some Santa gifts so that Will would not be disappointed on Christmas morning...he kept telling us that Santa knows where you are all the time, so he would be able to find us.  Smart boy!  Watching Will open presents from my hospital bed was another one of those moments that I'll never forget because it was so far from what I had pictured Christmas morning to look like, but ya know what?  Will thought it was incredible that Santa delivered to the hospital. That Santa is such a great guy).  We spent Christmas night in Rochester at the hotel (thankfully they serve a meal every night at our hotel because NOTHING was open.  And it was chicken noodle soup of all things, which actually tasted pretty good!) and then drove to the north side of Kansas City the next day and got a hotel with a pool for Will so that he could burn off some energy. (He is such a good traveler and so patient with everything going on). Then drove the rest of the way home the next day (Will has reflux and he was throwing up the whole way home probably because we ordered pizza after swimming and right before bed.  We know better but weren't thinking... Y’all, I can’t make this stuff up).  We really thought we were going to be home by Christmas, so Will was pumped that Santa had delivered presents to our house too while we were gone. He brings a lot of joy during the really hard moments.  So thankful for that little man.

If you’re curious —I would be —it’s really strange not having a bag anymore. My body didn’t have to use those muscles for 6 months. So now I’m relearning how to go to the bathroom and pass gas. The pressure in my gut sometimes can be pretty painful because it is just not efficient at getting everything out yet. For quite a while, my doctors said it will be like my disease is back (awesome!!!!!!! Haha) because I wil have frequent and urgent trips to the bathroom. This was interesting on the drive home for sure. But again, i can see that my gut wasn’t even fully awake yet on the drive home so  thankfully God took care of that and we had no accidents.  My Jpouch is very small and over time it will increase in size and be able to hold more and more so that I will have less frequent trips to the restroom.  This will just take time and patience.

First time sitting in a chair. First time not feeling like I was going to throw up.

Now that we are home, I’m hanging close to home (and my own potty) while my body re-adjusts and learns how to use my Jpouch. My incision is healing really nicely, and I do loooooooove not having to empty a bag or change my bag every three days. I know it will get better and better but I’m still exhausted (I’m still waking in the night a lot to go to the bathroom) and healing and recovering.  This last recovery was a bit traumatic. I won’t say that it was easy because it wasn’t.  I do think we made the right choice, and I'm so grateful that we have access to amazing health care (and from a practical standpoint, that we were able to get all my surgeries done on one calendar year for insurance purposes).  :-)

Watching It's a Wonderful Life on Christmas Eve in the hospital.  It's such a freeing thing to live aware of feelings and how we can be so unbelievably frustrated, uncomfortable, and disappointed with our circumstances and yet at the very same time so thankful and grateful and appreciative of all that God has done and is doing.   

I was surrounded by so much family and support, and for that I am so thankful. I could never say thank you enough to my parents and the Kleppes for walking every step of this journey with us.  It was a Christmas to remember for sure! I will never forget watching It’s A Wonderful Life in my hospital room on Christmas Eve alone in my hospital room. 8 years ago to that day, I was diagnosed with this disease, and it was amazing to reflect on how far God has brought me (us) and held us in his tender care. From pill after pill, years of steroids, Remicade, Humira, and Entyvio, suppositories, more steroids, 14 colonoscopies, more doctors visits and stool samples than I can count...what an amazing 8 years it has been.  2018 was rough but it was an investment into better health long term, so we look ahead with anticipation to 2019!

We would love your prayers for continued healing, patience with my body and J-pouch as we get used to one another, strength for Matt as he works and is Mr Mom when he comes home and takes care of me and Will, and strength and courage as I start to leave the house more and more (and venture away from my own potty)  and begin real life and work and all the things start back up.  Even though our life has been "on hold" in so many ways, it's always kind of a strong reality when you come back from the hospital and find that life is moving along and still going regardless of how we feel.  We are eager to plug back in to our "normal" life but also know that we will have to develop a new normal and new rhythm just as we have done with each surgery.  (I'm not great at resting or laying low but I know my body needs to continue to rest). We cannot even express fully our appreciation your prayers, messages of encouragement, meals delivered, cards and gift cards sent, and support all along the way! To God be the glory for all the amazing healing he has brought and will continue to bring!  We know that in a few years we will look back on this and it will be just a season, but we want you to know how thankful we are for each of you that have walked and continue to walk this journey with us. 

Feeling blessed. Scars and all!
(If you're curious and zoom in... the big scar on the right is where they closed up my ileostomy.  Then you can see the scars from the first two surgeries on the left and above my belly button.  And then there is one more large scar down below you can't see along my c-section scar.  It's incredible that the majority of these surgeries were done laparoscopically,
so my scars are actually very minimal!) 

If you want to go back and look at my earlier trips to Mayo, click below.

1) Before surgery 1 at Mayo 

2) After surgery 1 at Mayo

3) Surgery #2 update 

And if you view my blog in in web version (scroll to the bottom of your phone and click "web version") or view it on a computer, you can look at the right side of my blog and read allllll the chapters leading up to these surgeries going all the way back to 2005 when I first got sick up to the present.