Wellllll....
It's been six weeks since my surgery. Wow. Let me recap what life has been like post surgery:
Wednesday, June 27th:
-Met with my doctor, Dr. Kane.
-Lab work.
-Met with a stoma nurse and got some instructions (they are so informative and so kind). We talked about ostomy care, foods going in and their particular effect on output, the improtance of hydration (your colon is what absorbs most of the water in your body so it's particularly important to stay hydrated when your body doesn't have a colon to retain all that water. Your small intestine does eventually learn to absorb more. I learned A LOT)...they really put my mind at ease like "I can do this!" It became very real at this appointment as they marked my belly for where my ileostomy would be located.
-Met with my surgeon, Dr. Mathis. She is awesome. But she actually didn't have me on her scheudle for surgery (Mayo recently updated their computer system for charting and for scheduling, and this caused a bit of a disconnect when they scheduled my appointment with my doctor but the surgical team didn't get the memo to put me on her calendar). I freaked out for a hot minute because my surgeon was leaving for vacation on Saturday, so it looked like we might not get it done on this trip. Buuuuuuuut, she's amazing, and she worked me into her (already full) schedule and agreed to do my surgery on Friday. Blesssssssssssssssss her, right?!?! She didn't have to do that. Just another example of how amazing they are.
Thursday, June 28th:
-My last colon prep EVER.
-It was horrible like always but I managed to drink it all and kept it all down. Felt so nauseated and was up pretty much all night pooping, but I knew it was the last one ever, so it was an investment!
Friday, June 29th:
-Check in time was 11:00am.
-We waited what felt like an eternity.
-My surgery didn't actually start until closer to 6:30pm.
-I was out of surgery around 10:30 or 11:00pm.
-I LITERALLY woke up from surgery pain free, ya'll. The funny part--I didn't know I was in pain before the surgery. I honestly didn't. But the lack of pressure and the lack of dull ache was just phenomenal. And this is with 3 different incisions. The nurses in recovery said they had never heard anyone so positive and feeling so good as me after this kind of surgery.
-When they got me up to my room, I got to see Matt and my parents around midnight. Man, was it good to see them.
-The bag did feel strange being attached to me, but it was also AWESOME to not be running to the bathroom which was such a pleasant reminder that we did the right thing!
-My nurses offered to get me something small to eat and said I could get up and walk if I wanted to, but it was such a long day that I just wanted some water to drink and a cozy bed to sleep in. I remember sleeping great that night because I was so exhausted from lack of sleep the previous night and lack of eating that day before surgery. I was exhausted, and it felt good to sleep. My sweet hubby stayed the night with me that night and I just remember feeling so much peace for the first time in a long time.
Saturday, June 30th
-I rested a lot this day.
-I got up and walked.
-We watched the World Cup quite a bit.
-I started off eating slowly--crackers, apple sauce, and pudding were some of the first things I tried.
-Later that day, I ate some toast and by dinner I ate a club sandwich. Food tasted amazing. My only restrictions at this point were no raw fruits and veggies and no nuts or seeds. All of these can cause blockages in your stoma, and they wanted to give it time to heal ( is usually formed in the first two weeks after surgery, so this is when they want to be particularly careful to not have any blockages).
-An ostomy nurse came and showed me how to change my bag for the first time. My stomach was SO tender this day, and I'm sure she wasn't being rough but it felt a little like when you watch the nurses care for your newborn and they are just so self-assured--and for lack of a better term--rough but she was extremely helpful and knowledgeable, so I was appreciative of her help. Right after surgery your stoma can be very swollen, and mine definitely was so each day as the swelling goes down, they have to change the size of the wafer (sticker) that attaches it to your body, so I was grateful for her help. I also started emptying my own bag by the end of this day.
-My nurses were so kind, so thoughtful, so helpful and never once made me feel gross or like an inconvenience for have a poop bag. Their servant hearts were incredible.
-Will came with Matt's parents to visit me, and it was wonderful to see them. It didn't seem to phase Will a bit that I was in the hospital, and he was so sweet and just wanted to lay by his mama.
-My mom stayed with me that night so I wouldn't be by myself, and I was so grateful for her help.
Sunday, July 1st
-I woke up, and they were already talking about dismissing me since I was eating, walking, and comfortable with caring for my ileostomy.
-Since we had a hotel booked for another week (as they had advised doing), I felt comfortable leaving, knowing we had some follow-up appointments with my doctor and the stoma care team.
-We left that afternoon, and it felt great to be out of the hospital and back at the hotel where I could sleep more without getting poked, prodded, and woken up multiple times in the night.
The rest of the week, we rested, enjoyed our time in Rochester, and went back for multiple check ups and got plenty of help in how to care for my ileostomy. As you heal, the swelling from surgery goes down and the size of my stoma changed, so it wasn’t nice to have them help me change my bag at first and get their help and insight. Again, this place is incredible. Everyone from the parking attendants, the check-in desk, the nurses, the doctors, the staff, they are allllll amazing, kind, gracious, and helpful.
According to Will, this trip was his “favorite vacation ever.” He spent the 10 days being loved on by grandparents, and he had a blaaaaaaaaast. Matt’s parents kept him the majority of the time, and it was such a blessing so my parents and Matt could be there for my doctor’s appointments and at the hospital the entire time with me to listen, ask questions, and help me with pretty much everything! We are so blessed and thankful for grandparents. My mom, Will, and I flew back on Sunday, July 7th (my dad and Matt drove to bring all our luggage so my mom didn’t have to navigate too much gear with me in a wheelchair and having a four year old).
Home never felt so good. My bed was amazing. Being in my own space was wonderful.
Added September 12....
We have had such amazing help—prayer support, gifts, help with meals, help with Will, listening ears, gift cards to eat out, and we used and appreciated every single one of them! It wasn’t until I got home and tried to (slowly) ease back into life when I realized what recovery was going to be like. Small things just wore me out, and at first I needed help all day with Will. I would take a shower and didn’t have the energy to blow dry my hair. I have had to learn to make decisions about what and where will give my energy for the day—it’s been a great lesson in letting go of certain things—dishes, cleaning, updating this blog. 😜
I am still just worn out all around. I’m not one to sit around much, so after being pretty sick continuously for two years as we tried meds and then after having major surgery, I’m still repeating to myself almost daily: “It’s ok to rest. You just had surgery.” Looking forward with anticipation that I can run with Matt as will rides his bike this spring. It’s truly the little things!
We are BEYOND grateful and could never express how thankful we are for the huge outpouring of love and support. We are just overwhelmed and humbled by your thoughtfulness. THANK YOU THAK YOU THANK YOU!
Surgery #2 is coming up soooooo soon—Thursday, September 27th! Short version is that they will use my small intestine to build my new colon (I’ll still have a bag for 12 more weeks until surgery #3....basically, this new colon needs time to heal, so I will have two “connections” after this surgery ....my small intestine which will empty out into my stoma/bag and then the southern end coming up from my new “colon” to my ostomy site just waiting to be connected with the rest of my small intestines during surgery #3 when the bag is removed and all is reconnected). We would so appreciate your prayers as we continue to trust God, move in obedience, and allow him to tenderly love, heal, and provide all that we need! Love y’all!
Kristin
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