One year later

Today marks the one year anniversary of Mackenzie having her colon removed. It's been quite a journey. I have my daughter back! Feeling blessed.

A message from Mason:

It's hard to believe it's been a year since the first surgery.  In some ways it's gone fast, but there were definitely long periods of struggle.  So far I've only been a reader of this blog, and am glad I finally have a chance to contribute to the storyline.  Here's the story in my own words:

Pre Surgery

Leading up to the surgery, Mackenzie had gotten used to a reduced quality life.  Lialda (sp?) had lost it's effectiveness, and she was trialing different medications to see if anything would get her back into a stable remission.  After a few unsuccessful attempts, the doctors starting recommending biologics.  This was very scary to me as they had several serious side effects.  The most frightening part was that biologics were being pitched as a long term solution.  In other words, Mackenzie would be exposing her body to harm inducing drugs for the next 60 years.  After every appointment I would bother her with 50 questions because I was convinced there had to be another solution.  As it turns out, surgery was an option that could completely remove the infected area.  This was not a perfect solution as there were several risks during surgery and a high likelihood of a compromised digestive system long term.  But regardless of the risks, it all seemed completely worth it to me.  Would you rather live your whole life at 60% health or spend one year at 40% health and then be back to the real you?  

Her condition worsened slowly until surgery was no longer an option but the recommended remedy.  She had been taking a large dose of prednisone and it had started to effect her body and her mood.  I could tell that she was increasingly self conscious  because there were more and more "do I look OK in these jeans" moments (but she still looked great!).  There was significant weight gain, but a lot of it was in the riiiiight areas.  As her condition worsened, I was sad to see her health declining, but glad that definitive action was being taken.  When I got the news that surgery was to be scheduled I was thinking "Alright let's fix this!"

First Surgery

We had a ton of confidence in Claudia Hriesik and knew we were in great hands.  The surgery went great and I was really inspried by the Da Vinci robot.  If you haven't seen it check it out.  Amazing.  https://www.youtube.com/watch?v=VJ_3GJNz4fg  

After her first surgery Mackenzie was free.  The root cause of the problem (the colon) had been removed and was no longer acting as a parasite to her body.  She was worn out from the invasive surgery, but had a very positive outlook and her energy quickly came back.  I was proud and took every opportunity to say "Kenz whip out your bag and show these people!"  If you have an illeostomy bag, OWN IT!

Second Surgery

The second surgery was scheduled about as soon as it could have been, and honestly we were a little caught off gaurd by Mackenzie's recovery.  The surgery went great, but her energy didn't quickly come back.  Our leading theory is that she was no longer on prednisone and therefore had to recover naturally.  She had several episodes of severe stomach pain where she would be doubled over on the couch or walking around like a 97 year old hunchback.  She went to get herself checked out several times and we even spent a Saturday in the ER in Michigan to get some MRI's.  Nothing conclusive was ever found, which sometimes is worse because there is no closure.  Our leading theory here is that there was some sort of kink or irregular path of her upper intestine near the stoma that was making it painful to pass food.  Her diet was supposed to be relatively unrestricted but to try to manage the pain she stuck to easy to digest low residue foods.

Just a quick note in here to say during this phase we also got married!  We had been putting of the wedding for health reasons and finally decided to book it.  Kenz was ill for some of the wedding day and a some of the honeymoon but overall everything was awesome and we both have no regrets about inviting her illeostomy bag to the wedding.

Third Surgery

By this one we were excited to end the process.  Going to the hospital, sleeping by her side in the room, eating the snack basket from the Britt's, it all felt fairly routine.  Tony and Marissa brought the nintendo Wii up to play Mario Kart..we had this process down.  The recovery was smooth and now Kenz had a new medicine marvel to show to her family and friends...the hole!  

Back to Life
Within 1 month kenz was herself again.  For the first time in over 2 years it wasn't me saying let's stay out with freinds a little longer or go do this or that.  This very welcome role reversal meant that my wife was back!

Currently kenz is back to substitute teaching and is looking to get a full time teaching job next year.  We are very happy and very thankful for all the support of our family and friends.    Also thank you to modern medicine, God, Claudia, and most importantly the da vinci robot.  No colon and still rollin'!  Also, Mackenzie's farts are now much more pronounced and nearly rival mine!

Mason

A message from Kenz:

So today marks the one year anniversary of my 1st of the 3 j-pouch surgeries.  It has been a little over 3 months since my reversal surgery, and I thought it would be a good time to give everyone an update on how things have been going.  

I am beyond excited to say that I feel amazing!  I feel like myself again.  I'm back into the normal routine of life; work, exercise, cooking, hanging out with friends and family, and being a much more fun wife (and aunt).  Shout out to my husband who has been so amazing and supportive through all of this. As difficult as the last year has been, it was so worth it.  I would do it all over again if I had to.  I know that UC is a constant battle for so many.  My hope is to share a positive story of how surgery can give you your life back. It certainly has given me mine back.

Here are some more details about my everyday life after surgery (mainly to inform my fellow J-Pouchers) :)

My surgeon recommended that I take a daily probiotic for the rest of my life.  I have been doing so ever since my reversal 3 months ago, and I have not had any complications (I know that a daily probiotic can help reduce the chance of complications such as pouchitis).  Besides my daily probiotic, I am completely medication free!  I Have an average of 4-6 bowl movements per day, 1 being during the night.  I honestly have to say that this does not affect my daily life in any way.  There is no urgency and no pain.  The only time a BM gives me irritation is if I eat something spicy.  Speaking of food, I can eat whatever I want!! Also, I am slowly gaining my energy back, and can get through my days without needing a nap (this is awesome for me, as simple tasks used to tire me out quickly).  Like I said before, surgery has given me my life back, and for that I will be forever grateful.  

I want to thank my mom for all of her continued support and for making this blog happen! She truly is an amazing woman.

If you have more questions as you consider or go through this process, please do not hesitate to ask me!

Mackenzie

Some pics during the journey and some pics 1 year later.