Sunday, April 27, 2014


What is the one question you know you will ask every day? In our house the question is very simple: has Jacob pooped? It has become normal dinner conversations. I have at least one text a day from one of Jacob's nurses asking about his tummy.

If the answer is yes to the named question, there is an array of very detailed follow up questions about amount, consistency, color, pain level, number of baths, number of loads of laundry and the list goes on and on. Believe me, the new wood floors in our home are saving my sanity.

There is never a happy medium when it comes to Jacob's tummy. He is either having a flare up of his colitis or he is constipated. It is a delicate balance to manage the two extremes with medications helping him to go or medications helping him to not go. Colitis is also very painful for our little guy, and it is the one reason we see seizures these days.

Despite poop being the topic of the day, Jacob's GI doctor still took me by surprise when he suggested a colectomy for Jacob. A colectomy is major surgery removing the colon. Jacob would have an ostomy bag, which would collect his stool. His thinking is that Jacob gets so very sick with his colitis, and Jacob would not have colitis any longer. His GI doctor is also concerned that Jacob will never get off steroids. Every time we are weaning him off, his colitis flares up, and we have to start all over again. Lastly, an ostomy bag would help with Jacob's motility issues which very likely will continue to get worse as his disease progresses. We can definitely say it has gotten worse over the last couple of years.

But there is a big BUT. A colectomy is major surgery. The big question is if Jacob could handle that. What about complications? Jacob's care is already very involved, so adding an ostomy bag and everything that goes with it is yet a thing we will take care of daily. Have we truly exhausted all options before jumping the gun?

GI is scheduling an outpatient care conference to discuss Jacob's tummy and what our options are. We know that Dr. E. and Dr. C. are against the surgery. We know Jacob's mitochondrial doctor gets to weigh in as well at the care conference. GI sees this as a quality of life decision. My initial thoughts and gut feeling tell me to not go ahead with the surgery. I would love to never have to think about colitis ever again, but I am not entirely sure we have exhausted all options yet. I am also not sure Jacob would handle this type of surgery very well at all.

We're at a crossroads when it comes to Jacob's GI issues. These discussions and decisions are never easy, and they always challenge us to try to make the best possible decisions with the information we have with no guaranteed outcome. At the same time, I welcome discussions across Jacob's team. There has been times where Jacob's seizures and respiratory issues have been at the top of his medical list. Over the last couple of years, his GI issues have taken over the number one spot.

Tomorrow, we are also back at Children's to learn how to inject stress doses of hydrocortisone in case of Jacob having an acute adrenal crisis again. There is always something new to add to the list.

Despite big decisions ahead of us, we are enjoying this beautiful Colorado spring. Everything is in full bloom, boots and winter jackets are tucked away, and our boy is happy!

And if everything goes well, Jacob is back in school with his classmates this week again! Cross your fingers!

Love, Maria.

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