Wednesday, November 28, 2012

Post 38: Goodbye Ostomy & my new life with a J-Pouch

I am now at the final stage on this diagram (C/D)

It's been about 9 days since surgery, and I am doing pretty well. At the bottom of this post is a video of the old me. I will post pictures of my healing progress soon. I have the expected aches and pains and I am exhausted, but each day I am seeing some progress and feeling a little better. Just to clarify, this surgery was to reverse my ileostomy and now I am putting my J-Pouch (that was constructed in my previous surgery) to use. It's been challenging learning how the "new me" operates. As of right now I am not allowed to lift anything heavier than a gallon of milk for the next 6-8 weeks (to prevent the risk of a hernia where my ostomy used to be). You can imagine how challenging that will be with a 19 month old toddler. But so far, so good.

I was in the hospital for a total of 5 days and here's how the past several days have been going:

Saturday, November 17th
Before the journey began, we had a special Thanksgiving feast because we knew Phillip and I would be stuck in the hospital during the holiday. I also knew this was my last chance to eat a good meal for a while. I am glad we had a good dinner because I was not able to drink or eat anything until 5 days later on the following Thursday. On Thanksgiving day, I was able to have my fist sip of delicious chicken broth for Thanksgiving dinner. Barf. (And I actually think I did barf that day....anyway) But hey, now I'm home and on the mend.
Elise at Thanksgiving Dinner.

Sunday the 18th- Clear liquids only diet - Prep for surgery. It was nice not having to drink the Golightly!!! Yay! I didn't have to drink it because, well, I don't have a colon! It's much easier to prep when you don't have a colon! I know you all are so jealous. Haha.
Just nothing  after midnight.

Monday the 19th- Had to arrive at Shands for surgery check-in and was taken back around 5:30PM. LONG day with no water :(
The surgery took a couple of hours and I was in recovery for a bit. MUCH easier than the last surgery that took 9 hours.

Tuesday the 20th to Wednesday the 21st- NO food or water until my bowels woke up. I also had a scope done on my JPouch to make sure I did not need another dilation.

Thursday the 22nd -Things got moving so I could have a liquid diet

Friday the 23rd- I was allowed to try solids. This day was HELL and when the REAL PAIN started. I was getting up and going to the bathroom every 15 minutes and it felt like I was pooping shards of glass and acid. The air trapped in my intestines was INTENSE. I was thinking "what have I done!! I just want my ostomy back!!!" I was pretty depressed and in so much pain I just hit rock bottom that night. My incisions were painful and I just was ready to go home and be with Elise.

Saturday the 24th- things were slowing down and getting much better. I put on my best fake smile when the doctors came in to see how I was. I pretended I was super duper and feeling great so we could get the heck out of there and get home to our baby girl!!! They believed me and let us go! We couldn't get home to our little girl fast enough. Honestly a lot of that week was a blur from the anesthesia, morphine pain pump, 3 severe panic's all a big blurry nightmare.

Hey look!! No BAG!!!
Eight days after surgery-
 bandaged up and on the mend.
The great thing is today I can look at my stomach and I no longer have a bag of crap attached to it!! Yipee! It's the little things :) My new functioning JPouch has been interesting over the last few days. I am having to use lots of baby wipes and creams and soak in warm water to get some relief for my poor behind. Keep in mind, I have not used the bathroom like a "normal person" in over a year. This has been a big learning experience over the past few days and it will continue to be for some time over the next few weeks. Patience is my biggest challenge at this point and recovering from the frequent panic attacks during my hospital stay took a big toll on my emotionally. Phillip never left my side last week and he was truly my hero through all of this. I can't tell you how lucky I am to have such a great family. My mom stayed at our house and took care of Elise for us too.

Well, a day before my reversal surgery I was brave and decided to make a video of me changing my ostomy bag. I was super nervous and Phillip recorded me and cheered me on. I really wanted to document it not only because I wanted to have a record of this stage in my life, but also hoped it would be helpful for someone who might be struggling with the same issues. When I first came home from my last surgery it was one of the hardest times in my life. I felt like we were just thrown back into the world without any clear instructions. Phillip and I had to figure this out all on our own. It would take us hours to get the darn thing stuck on my stomach, and then I would have a leak and have to start the whole process again. One emotional meltdown after another.  Having an ostomy is life changing, but the most important thing I had to remember is I had the power to control how I react to things in life that are thrown at me. I had to decide if I was going to be a victim, or put my big girl pants on, put on some lipstick and pull myself together and move on with my life. As incredibly dorky as I felt while I was recording this,  I still wanted to post a video to show that having an ostomy is not the end of the world, and in fact you can have a pretty awesome, normal life with one.

Now that I don't have my ostomy anymore, of course I am excited to not have to worry with all of that stuff! But these next few months are going to be a big transition for me. Having an ostomy became my new normal. I finally got the hang of it, everything had healed and was functioning well, I figured out what to eat/not eat, learned how to pick out clothes that would disguise it. It just became part of my day. I will admit, however, now that I can finally see my bare stomach (Oh how I missed you  belly button!) it will be nice not having to worry about passing up a dress or shirt I see at the store because the bag might show through the fabric. Without my osotmy I know things will be a be bit easier. But living without a colon will forever have it's challenges. I still have to make sure I stay very well hydrated, I will still go to the bathroom more than a normal person would. I will still have to keep a note of what foods disagree with me. I'm not in the clear yet, and I know I just need to remember to be patient with my body. Intestinal surgery is no walk in the park. Digestion issues affect everything else in the body. Patience......

But today I am allowing myself to toot my own horn and say I am proud of myself and how far I have come!! A year and a 1/2 ago, I gave birth, found out I had cancer, had a total colectomy, endured 8 rounds of chemo, gone through countless procedures and tests, lived with an ostomy for a year, and just had a reversal surgery. And now I am just so grateful to be here writing, cancer free and with so much joy and gratefulness in my heart.  This long journey has chewed me up and spit me out. I feel like I have been dragged up and down the street a few times as well. I am a different girl. I am damaged, and a bit tattered and torn. But I could care less about scars, and I am over with being embarrassed of what has happened to me. This experience has just become part of my story. But it isn't who I am. I am grateful for renewed health and have a greater appreciation for the human body. Our bodies are truly miracles!! Isn't it amazing what we can endure and how we can come back even stronger than before? I have a lot more learning and growing to do, but I am proud of myself and my amazing family.

DEEP BREATH. It's all going to be ok :) 

Posted below is the video Phillip and I made just a day before my reversal surgery. 
(Please nice comments only!) I was a nervous wreck and felt like a huge dork, so I know I left out a few things. Just as a warning, if you have a sensitive stomach don't watch. (To put it bluntly you will see intestines hanging out of my stomach) But this is me and how I've been living for the past year. 

Goodbye Ostomy! I already don't miss you :) 
A previous post I did listing all of the products I use can be found HERE. 

This is another video I wanted to share of someone who has greatly inspired me throughout my whole ostomy experience. Check out her blog at