Think back, what did you imagine your life was going to be like
Growing up I imagined my future to involved getting married to an amazing man who would help and encourage me through life. We would have a couple of kids, a boy and a girl. My career choice was to be a teacher, I wanted to shape the future generations. I assumed eventually we settle down in a huge fancy house and I would become a stay-at-home mom. You know the American Dream 😉
Change is the only constant in life
Now let’s fast forward a few years, and my wants for life have changed a bit. This isn’t a bad thing! As we go though life, we have different experiences and opportunities. I truly believe that these will shape and form us into the people we are meant to be.
An experience I wouldn’t wish on my worst enemy is having to deal with illness and health issues. There isn’t a day that goes by where I don’t wish Derek and I could have skipped over that time in our lives. On the flip side, it has shaped and changed our lives in ways we never imagined. Here and there I have shared bits and pieces about what Derek had to endure. When Derek got sick, our lives were 100% turned upside down.
Derek was diagnosed with ulcerative colitis when he was 16 years old. When we met and started dating, medication was keeping his flare-ups under control. Derek had always wanted to live in Colorado, so in 2009 we packed our stuff and moved. (Yes, I was that crazy girl chasing the boy – but I also knew deep down he was the one.) During 2012 the medications stopped working as well as they should. Medications like Humira and Remicade started getting recommend by Derek’s doctors and so the research began.
If you google them, the side affects are scary!! In doing some additional research, Derek came across a j-pouches. A simple way to explain the j-pouch – the full colon is removed and an internal pouch is created using part of the small intestine. Dr. Michael Page is the doctor you want to do your surgery, he is seriously the best. We relocated from Colorado back to Iowa because we knew how much we would need family during this difficult time, and because that is where Dr. Page was located.
Derek’s first surgery took place July 23, 2013. It involved removing his colon, creating the j-pouch, and required a temporary ileostomy while things healed. After a few weeks Derek had recovered and life was amazing again. He was able to do whatever he wanted and wasn’t confined to locations near restrooms.
The second surgery took place October 23, 2013. This one was quick and simply “hooked up” the j-pouch and removed the temporary ileostomy. Recover from surgery went pretty well, but training the j-pouch was difficult. The j-pouch was supposed to be a cure for colitis, but life was getting worse than it had been before we started the process. By March 2014, Derek was unable to leave the house and was down to 109 pounds. He was fading before my eyes and there wasn’t anything I could do about it.
A week hospital stay with more test than I can remember occurred over the first week of March. Derek spent his birthday having scopes done on both ends – not pleasant. His gastroenterologist didn’t really have any answers, and suggested we headed to Mayo to see if they could figure anything out. All the test said Derek has colitis but all the doctors were diagnosing him with crohn’s. It was at this time that everyone started bring up Humira and Remicade again.
After returning home, Derek opted for an additional surgery. On April 23, 2014 he had the j-pouch removed and a permanent ileostomy take its place. This was by far the most difficult and painful surgery. By the time it took place, he was so very sick and required blood transfusions and high blood pressure medications to recover.
Unfortunately, we never received answers as to what Derek’s actual diagnosis was. It is possibly that if he has crohn’s the ulcers and flare-ups could come back, but it is also possible that is was colitis and his body just couldn’t handle the internal pouch. Blockages are something that Derek struggles with, if he eats foods that contain too much fiber. Life isn’t easy with a permeant ileostomy, but so far it is a heck of a lot better than his “life” with a j-pouch.
Life is short…Live it!