No Colon, Still Rollin'

I want to blog about my experience having my whole colon removed because of having Ulcerative Colitis, an autoimmune disease I've been dealing with for about 2 years prior to this surgery.  My surgery date was December 14, 2017.  This is my journey. 

I traveled to my Sister Selena's house in October of 2017.  She lives in the town we grew up in, Simi Valley, California and we grew up members of the Church of Jesus Christ of Latter-Day Saints.  Our Stake was having a 50th anniversary celebration weekend, so I drove to her house!  THAT was brave I tell ya!  I stopped at every bathroom I needed along the way.  Selena was in the big production play.  She played one of the 'extras' doing some singing and dancing and fake playing the piano.  The production was called The Grand and was about two hours long.  I loved it!  My daughter Jennifer and her kids came over too.  Our parents came and it was a wonderful weekend!  We saw kids from when we were in high school show up for the fireside Saturday evening and what a reunion it was!  Pictured above is me, in yellow, with two friends from our high school days in Simi Valley, Lisa and Sandy.  We LOVED talking to each other and some others friends came too.  I post this photo because my friend Lisa knew when she saw me that something was not right with me.  My face was very swollen from being on Prednisone, a steroid that was the only thing that kept my UC symptoms from getting out of control.  I told her about what was going on with me and she was gracious and sympathetic.  She's been through her own set of trials.  Don't we all go through things?  That is how we experience and learn in this life.  Sometimes it's so hard though!  I didn't care that I looked all puffed up and that some people couldn't recognize me... it is what it is... I was glad to be there.  

This is my daughter Jennifer with her 3 year old Olivia, my sister Selena, Me, my Mom Marie and Dad Lynn Morgan.  We had the best time!  We ate at Denny's after the performance.  I stayed at my Sis's house, and was up to the bathroom several times in the night.
I saw my GI and he said I had three options. 1)  TRY another infusion drug 2) Surgery or 3) Be part of a test group for free testing other medications.  I chose #2.  I wasn't wanting to TRY another drug.
So, we talked a little more and scheduled surgery for February.  BUT, I admitted myself to the hospital in December because I was done, my symptoms were so bad.  I went to the Southern Hills Hospital December 5, 2017.  I was there 5 days.  They put me on a liquid diet and I prepped for a colonoscopy.  It was awful!  I also swallowed a "Pill Cam" so they could get pictures of my small intestines too.  They ruled out Chrons.  By December 9th, I was home anticipating the surgery now scheduled for December 14th.  I was relieved and ready.

This is a photo of me December 9th, resting at home waiting for surgery.  I didn't want to stay in the hospital and wait!!  I was tapered on the Pred and was on a very low dose.  I was getting no sleep and getting very weak.  Laying in a hospital bed for 4 days straight sucked all the strength out of me!

 This is me two days after my surgery.  I didn't take any photos, but all my kids that could came to visit me in the hospital the day after my surgery!!  I still had an epidural and felt GREAT when they were here.  No pain!  Brad and Kevin drove down from Oregon and Jennifer drove over from CA.  Daniel was here.  John is in Alaska so no way could he come.  He and his family came for a visit in early Jan.  sooooo nice!  We had an awesome visit and I felt pretty loved that they would come so far to see me after my surgery.  I needed them.  Of course my husband and love was with me as much as possible too.  Kelly was super great at helping me at home in my recovery.  He served me and helped me so much!

 This is another photo of me 2 days after surgery, all hooked up to monitors and stuff.

 By 4 days after surgery, I felt like a patient they were just playing with, testing, poking, having me take meds, taking my blood pressure every 3 hours, giving me insulin because my blood sugar was high (a side affect of Prednisone) and I felt like I'd been through battle.

This is a photo my son Daniel took of Kelly and I Christmas eve, 10 days after my surgery.  I posted this photo to my Facebook and Kelly's Dad could hardly believe it was in real time..  He said I looked so great!  We went to sacrament meeting.  I was weak and sore and trying to figure out my new appliance.  I was left with no colon and an external ileostomy pouch.  Basically my small intestine sticks out a little and I place on a bag that sticks to my skin and 'holds' my waste.  I empty the pouch several times a day and change the appliance about every 3-4 days.  I was very sore and tender for weeks!!  Ouch!  

This is a photo of Stephanie, Melanie and John January 3, 2018.  John and Mel and their little son Dawson came down from Alaska for Melanie's sister's wedding so they came to Pahrump for a visit!!!  Dawson turned one on the Jan 4.  Was so fun celebrating with them.  These kids helped so much.  They are preparing a yummy poppy seed chicken dinner here in my kitchen.  Love it!    <3

 This is my daughter and her kids!  They came when John and Mel came down fro a visit.  Jen wanted to see her brother and his family.  So sweet!  Olivia is 3 and David is 5.  Very awesome family.  Jen's husband Kevin is at home in CA being an awesome lawyer.  I miss them so much and know we'll spend more time together in the future.  :)

I thought I'd never wear jeans again after surgery!!  Here I am 4 weeks post OP in a pair of jeans and it's NOT uncomfortable!  Yea!  Prior to this I was wearing leggings and pajama bottoms all day.  Lol.  I'm starting to feel 'normal' again.  I feel great not having the UC symptoms all the time.  I do have to get up one - two times a night to empty my "Joey"  that's what I call my pouch.  Lol

I started venturing out after I figured out how to NOT have Joey leaks!  At first I was having blow outs 2-3 or more times a day!!  I ran out of supplies my first few weeks and we made a trip in to my surgeon's office where they gave me some free supplies to tied my over until my regular deliveries could be made.  Whew!!  This is January 12, 2018  I went with Kelly on a delivery at Dumont.  Felt great to get out of the house!  

Then we went on an excursion to the Valley of Fire State Park.  It was so beautiful.  Kelly wanted to see how I did traveling all day in the car.  I did GREAT.  Just needed a bathroom, like all normal people.  Lol    This is January 16, 2018.  The park is beautiful.  There are campgrounds and hiking trails.  We drove and I took lots of photos.  Loved our day.  

 This is my new great dane puppy Bella.  She's 8 weeks old here and she's been a great little distraction from me recovering.  She has been a handful and a whirlwind and sometimes so sweet!  We picked her up in San Bernardino Jan 20, 2018, 8 weeks old.  She was sooooo friendly and we were happy to find her!

I put this side by side together for my sister in law.  She wasn't sure I had a 'swollen face'  Lol.  First picture is Oct 19, on a high dose of Prednisone.  Puffy face.  Or Moon face as the UC community calls it.   Second photo is me Feb 25, 2018, 2 months after surgery.  Yes, I had a puffy moon face... so glad that's over!  

Here I am with Bella March 8, after my trip to AZ to be at my sister's daughter's wedding.  My niece Kristin and her love Sam were sealed in the Gilbert AZ temple and I flew to Phoenix to be there.  Selena picked me up and we spent some time at our parent's house after the weeding weekend.  It was a delight to NOT feel horrible!  
Bella is a blessing and a friend that follows me and needs me.  I love her.  I missed her!  She's such a princess!   This is after a 20 minute walk with Kelly.  All I could handle.

See, she's a princess all right!  Here she is on the couch April 2nd, 18 weeks old.  She weighs 49 pounds and is growing so much every week!  I'm writing this April 3 and she's up in Kelly's office with me.  We have a twin bed up here and in our room for her to sleep on.  I love her markings and her personality!  I post photos of her a LOT on my Instagram @alainamun    :)

All for now.  I feel great, but not totally recovered just yet.  I don't have my strength back.  I really should do Yoga or something to get my strength back.

Love my life and I'm blessed and thankful for my family and my doctors who have helped me get to this point, back to a normal, active life.