Well... today was our first Doctors appt since Haley has been out of the hospital. Besides her receiving her normal Remicade treatment... I wasn't sure what to expect or say or ask. I had a few questions, but they seemed to change after I received some info from the test they did while in the hospital. First, I love Meg (she used to be the remicade nurse, but since has become a CNP under Dr. Maisel), however, I really wish Dr. Maisel would have seen us. Meg knows Haley (& I) really well though... so I guess they would both see us... together! Is that asking too much?!?! Anyway... All of Haley's biopsy reports came back benign which is wonderful! She does have collagenous colitis though. Defined: inflammatory conditions of the colon that cause chronic diarrhea. Why yes, she does have diarrhea because she has to be on Miralax everyday because of constipation?! Treatment: basically the same low residue diet that we are on now... which I can now handle! In rare cases, surgery. There are a number of medicinces that are effective now... which gets to my next point. She is off all the medicines prescribed in the hospital however... one new one was added today for colitis. Side effects: causes bloating... which is what sent us to the ER in the first place. Her belly has been bloated since she was an infant... I'm trying to get rid of all the excess gas... not make it bigger! From the colonoscopy, they found that her whole colon is inflamed. They also discovered that there is no evidence of Crohn's... great!? What do you mean... why have we been doing this for 3 years?! Can we come off Remicade... "no, not yet." They also found a possibility of her have Celiac Disease... great?! We were told that 3 different time between the ages of 1 and 2 1/2 at Riley. (They couldn't make up their minds because her blood work didn't match the scope results?!)PLEASE, PLEASE pray that it isn't celiac disease... I can't (can but don't want to) do the gluten free diet. It is awful and I pray that no one ever has to go completely gluten free. If they got enough blood from haley today then a celiac panel will be sent off for labs. No, I don't have to cook gluten free yet because if we have to get more blood work then they want the results to be right. No, she still has to get remicade until we rule Crohn's out for sure. I'm not sure when that will be. I picture lots more blood work for Haley and more scopes. I HATE this so much for her!! Please pray... I have so many questions for God, but my faith will not be shaken! I can do this with HIS help!
BEST case scenerio: Haley only has Colitis!
WORST case scenerio: Haley has Celiac Disease & Colitis!
PRAY! PRAY! PRAY!
I will keep you posted as I find out more.
One last thing... her headaches came back the last 2 nights... so I'm taking her back to the eye doctor tomorrow. Dr. Mike told me her eyes would change a lot in the first year, so I'm hoping that is what the problem is.
