Friday, July 6, 2012

Days to Surgery: 6

So, I have been asked to keep a blog on the journey of this nightmare of a disease. Here is post one, so I will start from the beginning...

Rewind to March 2010. My husband and I welcomed our second daughter into the world. Everything was great. We were all healthy and happy and couldn't wait to start our life as a family of four.

Our world however, came crashing down just a few short months later.

Our oldest daughter, Alexis (who was 3 at the time) , was starting to go to the bathroom more and more. I kept taking her to her pediatricians office, and they kept telling me it was a bug and to come back in a week if it hadn't gotten better. Eventually we started noticing blood in her stools, and she was waking up several times throughout the night to use the restroom (and falling asleep on the potty!). I went back to my pediatricians office, and demanded them to run tests. We were sent to Nationwide Childrens Hopsital (in Columbus, Ohio) and a colonoscopy was preformed. I still remember the pit that grew in my stomach when the Dr told me Alexis had Ulcerative Colitis. Never in my life did I think *I* would be the one to have a sick kid. I cried alot the weeks following that appointment, I felt as if I let my baby girl down.

The gastroenterologist we were set up with has turned out to be a godsend. He answered all of my questions, listened to all of my concerns, and eased all of Alexis' fears. We started her on a course of Sulfasalazyne and the ever-hated Prednisone, but after a few months Alexis was finally in remission! Despite giving her medications several times a day, she looked and felt good. I was happy

The next year and a half we encountered a few mild flares, then everything (once again) came crashing down.

Alexis started having the symptoms again in January 2012. Joint pain, going to the restroom 20-30 times a day, loosing more blood than I thought was possible, persistent vomiting, fevers, loss of appetite and being so tired and weak she could barely stay out of bed for more than 20 minutes at a time. She was eventually admitted into the hospital and given a strong course of IV medication. We were hopeful that after a few days she would turn the corner, but that never did happen.

After spending about a month in and out of the hospital we were forced to try Remicade. The steroids were no longer effective, and Alexis was not getting any better. I read all the side effects and again, cried. How are you supposed to put a medication in your child's body that could eventually cause cancer? I was so angry. I didn't know what to do! However, I knew that there was nothing I could do besides a total colectomy and I knew I was not ready to put my daughter through something so drastic, so I gave Remicade a fighting chance.

Now, I will fast forward to present day. We have had multiple Remicade infusions, as well as several blood transfusions. Alexis' UC just isn't responding well to it, and again, isn't getting any better. Our next step is surgery which will be done 7/12/12.

I could write for days on how I feel about this. First and foremost, I am scared. Scared for how she will adapt to living her life with a bag at her side, I am also terrified for her to feel any pain. What I wouldnt do to take it all away!

I am still very angry that Alexis has had to deal with this. Shes 5 years old and to her, this is normal. Being in pain and going to the Drs several times a month (if not more) is completely normal. She asks to be in dance, and cheerleading and gymnastics and I have to explain to her that she is sick, and its just not possible right now..and that's just not fair. She deserves to live a normal life!!!!

But, alas all of our struggles, my husband and I do our absolute best to keep it together. Not only for our 2 daughters, but our families as well. We know they are scared but we want to reassure them that despite our scary this all is, this is what Alexis needs to live that normal life I so long for her to have.

And thats it for today, I am sure this is completley unorganized, but I had ideas running 500 mph through my head that I needed to hurry up and get out before nap time was over! I will focus more on the ostomy and what we have done to prepare later on tonight or tomorrow!


  1. So sorry your beautiful little girl has UC. As an adult with UC, I can't imagine hearing my 3 yr old child has this disease. I was already in my mid-50's when diagnosed. She has been through so much and I hope that the surgery will help her to be able to live a normal life. It's just not right for this to happen to young children. I will pray for her, you and Dad hang in there.

  2. I found this blog through a facebook page. And I have to say, what you and your family are going through with Alexis...Its exactly what my family and I were going through at her age. I was 5 when I was diagnosed with UC, with in the span of a year things got worse. I had my colon removed, a colostomy, and then they reversed it. I had no problems for years and years after that.

    Then when I hit 15 my world was turned upside down, and I was soon diagnosed with Crohn's. I am in remission now, and I hope things go well for your family and little Alexis!

  3. God Bless you and your family and your little girl. My daughter, Rachel was also diagnosed with UC at 3 years of age, failed Remicade..and is now diagnosed as Crohn's. Her disease is large intestine almost we are still looking at surgical options...perhaps diversion for now.
    It is so heart wrenching & difficult to make these decisions. They are all huge.
    Best wishes & I pray this is the beginning of a great new chapter for you all.

  4. I understand your pain and frustration. My son was diagnosed with ulcerative colitis in 1984 at the age of 5. After trying everything he had surgery 18 months later and wore an ileostomy bag the rest of his life. I thank God every day that I was his mother for the 45 years he was on this earth. With your love and support Alexis will go on to lead a happy, productive and normal life. Best wishes for happy days ahead.