Mayo Day 5: Change in Plans & FINALLY Getting an Accurate IBD Diagnosis

By Mom:  Bryan stayed all night at the hospital last night with Kailen. Overall, it was a decent night with a few challenging moments. Kailen vomited twice, both IV’s stopped functioning, her heart rate became elevated, her blood pressure decreased, her pain level increased, and her urine output did not increase–all of which were causes for some concern. So, needless to say, when Jeff and I arrived at the hospital around 7:00 a.m. this morning, things were buzzing! Some positive things: her ileostomy output is functioning much better than normal at this stage post-surgery and her walking is going very well. Dr. Cima, her colorectal surgeon, came for rounds shortly after we arrived and we learned some VERY surprising and new information. According to what he saw when he performed the flex sigmoidoscopy prior to surgery along with what he saw in her ileum during surgery PLUS the findings of the pathology reports from her colon showed that she has Crohn’s Disease NOT Ulcerative Colitis…something we have NEVER been told. While this came as a shock, it does explain several things she has experienced on this journey. As we looked at pictures of her colon, this morning, it was VERY clear to see multiple signs of Crohn’s vs. what is typically seen on/in a colon with Ulcerative Colitis. This news does change Dr. Cima’s original plan a little. Instead of 3 surgeries (the 1st being yesterday), she will now only have 2 surgeries. The diagnosis of Crohn’s means there will be no J-pouch formed. Instead, the 2nd surgery will be directly connecting the small intestine to the rectum. The timing of the next colon surgery will be determined by how she progresses over the next few months. This new news is not necessarily a bad thing, it is just a NECESSARY thing to know to enable the PROPER treatment for the disease. Please pray everything continues to improve and join us in thanking the LORD for Dr. Cima and his expertise in caring for Kailen.  #TeamKCT

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3 thoughts on “Mayo Day 5: Change in Plans & FINALLY Getting an Accurate IBD Diagnosis

  1. Sounds like you are in the right place! So thankful you are there with the very best treatment! Praying for you!

  2. Kim,
    Not sure whether you remember me from Centerfield or not, but I just became aware of Kailen’s journey yesterday and have been reading the blog to catch up. I had an IRA (the procedure Kailen will have to reconnect) 7 years ago. I would be happy to share any experiences with her if it would help her. I know that it really helped me to know what to expect and how to deal with things. Tell her to feel free to email me at: iteach@insightbb.com. And…I’m praying for her…as well as for you and the entire family. Lora Shields

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