Sunday, June 22, 2014

Answers are Hard to hear when they come with a diagnoses like this....

The past couple of months our oldest daughter has struggled with stomach issues. We have had several tests run, that lead to just more and more tests. But never getting any solid answers and just frustration. This past week while I was at work.  I got a call saying they wanted to admit her (6 hours away) into Sandfords Children's Hospitol to do further testing, much more invasive kinds of test to accually go in and see what is going on. I needed to have her there by midnight in order to get the tests scheduled and going for the next couple of days. So, I dropped everything and Amanda and I headed down the road. Thankfully, this lead us to a great Dr,  a specialist that was a Pediatric Gastroenteroligist.

She had an MRI the very next day and then the following day an endoscope and colonoscopy. Talk about being a trooper. She was so strong and positive through all these tests! I am so proud of her!

Through these tests the diagnosis is Crohn's Disease.  This was something we had talked to previous doctors about so we were a little familiar with it. Something we had hoped would not be the case. Answers are good, but they are very hard to hear when you are dealing with the life change for your sweet daughter!! My heart at this moment just heard the word and not all the facts. This all takes time to soak in.  Being strong for my daughter became most important, but inside I was falling apart and felt alone in a foreign land!!

What is Crohn's Disease?
Crohn's disease is an inflammation of the intestines (bowel).  It can affect the part of the small intestine, the colon, or like my daughter it is also found in her esophogus.  Crohn's causes swelling, redess, and even sores (ulcers) in the intestines. The ulcers can make a hole in the wall of the intestine, which can cause life threatening infection and bleeding. Both the swelling and scar tissue from the sores can block the passage of food. This is why she lost 10 lbs in 2 months.

How does this occur?
The cause is unknown. It is believed to the an autoimmune problem. This means that the body's defenses against infection are attacking your own tissue, but this has not been proven.

So how will they treat her?
Well for now she is on a powerful steroid, and a couple other meds to help calm things down and get her pain free. For long term though she will be put on a medicine for the Crohn's and from my understanding, help control it or heal some of the ulcerations. Medical science has no cure. But i know God is more powerful!!!  I will be making alot of adjustments to her diet. So much has to do with what you eat that can cause a "flare up".  I have so much to learn and this is just the beginning!

My heart?
Well my heart breaks for my daughter. She has been so healthy her whole entire life. Only on antibiotics maybe 2 or 3 times in her life. She is only 15. I wish she did not have to deal with this, but we will do all we can to educate ourselves and get the very best for her!! I have alot of emotions and one recently was asking God WHY!!   But, here we are. We learn, we adjust things, educated our selves, get in contact with others who have this disease. Always going to be learning what works or doesn't work for her. She will have a normal life, can have children, and I pray for her to go into remission once day soon!!  I love her more than life!!

As Amanda said "We came and We Conquered"

1 comment:

Florence said...

This may seem a little random... well frankly because it is..ha. I found your blog some time ago while looking into adoption blogs.

I just read your daughter's diagnosis & felt lead to comment. I know everyone has there own thoughts & opinions on health matters, but thought I would throw this out there. I myself was diagnosed with an auto immune issue. I was told by several doctors this would be a life long take medication kind of thing. I was very uncomfortable with the idea of the meds & there side effects, but was told there were no other options. I consulted with a naturopathic doctor & worked with him for several months. The family physician was very against this, but for some reason I just knew it was the right thing to do (At least try).

I am now 100 percent free of any auto immune. I do have blood work done every year, but it has been over 6 years with no presence. The results were family doctor could not believe it! Thought I would may be worth looking into for your daughter. Good Luck