Biopsy Day!

April 26th finally arrived! For the last 4 weeks we had been doing rectal irrigation's everyday so that Greysen would stay healthy and his colon could hopefully not get as full as it had been. Greysen spent two days before his procedure on a clear liquid diet and lots of laxatives. I was surprised at how well it worked this time! Rewind to the month before when Greysen had to prep for his barium enema he had to follow a clear liquid diet and laxative schedule until everything in his system came out clear. Here is how its SUPPOSED to work:

8am 1 square of ex-lax
9am 1 square of ex-lax
Every half hour after 9am 1 full capful of miralax until you get results

We stuck with the schedule and gave him lots of popsicles and clear liquids. Then we waited, and waited, and waited.....and waited some more for him to go running to the bathroom. Nothing. The doctor told me that 1 square of ex-lax will send an adult running to the bathroom! At about 4 pm I decided to call the on-call specialist. The nurse told me to just keep giving him the Miralax and it would eventually work. So I did that and at about 9pm he went a tiny bit. At this point I had given him half a bottle of Miralax! I just kept thinking "This cannot even be possible!" The Next morning I called the nurse again and she told me to start the whole schedule again for the day. At this point I just thought he was going to explode. The poor guy was only supposed to go without food for a day and now we had to keep going. By the end of Sunday night I had officially given him 1 full large bottle of Miralax and 7 ex-lax squares. Now that I think about it I should have demanded that they clean him out in the hospital because in his condition that was dangerous and ridiculous! By 9 pm that night he had finally gone to the bathroom but he never got fully cleaned out for his procedure even after all of that. This was my first clue that something was extremely wrong with him and this was more than just chronic constipation.

Fast forward to April 26th, here we were in the waiting room of the surgery center, bowels prepped in a day, and ready to get some answers. Greysen was extremely nervous as this was his first time ever getting put under. Dr. Flass came in and explained the entire procedure to Greysen and even asked him if he wanted his stuffed monkey to get a scope in his butt as well hahaha. We LOVE doctor Flass! He had never had an IV either and luckily they were able to put him to sleep before putting his IV in. The entire procedure took about an hour and a half. Dr.Flass performed the sigmoidoscopy and then a surgeon came in and took 5 biopsies from through out his colon. Dr. Flass wanted to be sure that enough biopsies were taken because there is no way of physically seeing where there are or aren't nerves! After the procedure they came out and showed us the pictures of the sigmoidoscopy which looked pretty good except for a lot of wrinkles in his intestine due to the stretching. There were no signs of inflammation or an allergy so they told us we would have to wait until about Monday or Tuesday to get the results of the biopsy.

We took Greysen home for a day of recovery and he was never so happy to be able to eat again! And since his scope showed no signs of an allergy he was finally able to eat a regular diet and not dairy free! I wish I could remember what we let him! It was probably McDonald's! LOL

My prayer at this point was "Lord please let it be Hirschsprung's because if it isn't I cannot handle more questions!" I needed an answer and not more questions...

Almost an answer...

About a week after our first visit with Doctor Flass we got a call from the nurse. Greysen's blood work came back negative for Celiac's but his Sed rate was a little elevated. She explained that it meant he could have an infection/inflammation somewhere or just be on the verge of getting sick. His numbers weren't too high so the Doctor wasn't worried.

The Doctor called later that day with the Sitz Study Results. He told me that Greysen definitely had some type of motility disorder because ALL the markers were still in his colon. To give you an idea of how crazy this is I will explain how it works. On day 1 Greysen swallows 24 circle shapes in a pill. 6-12 hours later those shapes should be travelling through his colon and within 24 hours they should be completely out of his body. On day 2 he does the same thing except the shape is a semi circle. Day 3 is the same thing except this time the shape is a Mercedes symbol. They do this to time how the body is digesting. On day 4 they take an x-ray to see where the shapes are at within the colon. A normal person would have no circles or semi circles in their system and the Mercedes shapes would be very low in the colon almost on their way out. Greysen's test showed ALL of the markers still in his colon! The doctor kept asking if we were sure we gave him the shapes in the correct order because there were some circles that hadn't even moved and then some semi circles were in front of the circles when they should have been behind . They were all mixed up! A normal colon would digest the shapes in the order they were swallowed!

When I got off the phone I immediately started googling motility disorders. The first one that I saw was Hirshsprung's disease. The symptoms were: Not passing meconium within 24-48 hours of birth, spitting up green bile, projectile vomitting, and much more. Greysen had had every single symptom. I showed my husband and didn't wanna jump to my own diagnosis but I was almost positive that Greysen had this disease.

On March 22, Greysen had the Barium Xray done. We had to wait over the weekend to get the results. FYI if you have to schedule any kinds of tests don't do it on Fridays because you will have to wait until Monday to get the results!

That Monday we went to Dr. Flass's office to talk about all of the results from the X-rays and blood work. As if the Sitz test results weren't crazy enough he showed us a picture of Greysens colon from the barium x-ray. This is what it looked like:

That huge kidney bean shaped balloon should be the size of a small tube. This is what they call a megacolon. Dr. Flass said he has only seen one other child with a colon this big. He estimated that it was 4 times the size it should have been! At this point I decided to mention the idea of Hirschsprung's. Dr. Flass immediately agreed that we needed to do some further testing to rule out Hirschsprung's. The thing about Hirschsprung's is that kids are usually diagnosed as a newborn and it is rare to be diagnosed so late because left untreated it can be fatal due to the picture above. After 6 years of his colon stretching this far it should have burst!!! God was watching over our son! 

The next step would be to schedule a sigmoidoscopy and a biopsy of his colon and rectum as soon as possible. The sigmoidoscopy would look closer at his colon to see if there was any inflammation (from a possible allergy). The biopsy would tell us if there were nerves present in his colon (Hirschsprung's is an absence of nerves). The soonest we could schedule the biopsy was April 26. I was due May 9th with our 4th baby and my original due date was supposed to be April 24th so I was very concerned that we would be having a baby at the same time! I just wanted to be sure that no matter what Greysen would make it to that appointment because we needed answers!

 

Dr.Flass

It's been awhile since I've blogged Greysens story so if you need to catch up here is where I last left off:)

Dr. Flass

In March of 2013 we made our way to Dr. Flass's office. It was just Greysen and I....and my novel of notes. I was determined that if we were gonna see a specialist, no matter how crazy I seemed, I was going to tell him every detail of the last 5 1/2 years. I didn't wanna miss a single detail that may be pertinent to a possible diagnosis or an answer to whatever it was that was causing my son to have an awful time pooping. I was really nervous that Dr. Flass was going to be a conceited know it all Doctor and I can remember asking God, "Please just let him listen and please help me feel comfortable talking to him."

When we arrived we checked in at the front desk and low and behold the receptionist was a friend of ours from church. This alone made me feel so much more at ease and comfortable.We waited in the waiting room until a friendly nurse called for Greysen. At this point I was feeling great because the staff was so nice and friendly. I'm a firm believer that a good doctor will have a friendly staff and a friendly staff works for a good Doctor:)

Once in the room, they took Greysens vitals, asked a few questions, then told us the Doctor would be right in. At this point my heart was racing and I was afraid I was going to forget all of my questions (Good thing I had them all written down! A full page of them haha). As soon as Dr. Flass came in I immediately felt comfortable by his presence. He was young looking, super friendly, and talked to me like a normal person! I really could not have asked for a better Doctor. He sat and listened to all of my concerns and never once made me feel rushed. He actually LISTENED. Most Doctors I have come across already have the answer before you ever have the chance to talk about the problem. Not only did he listen but this was the first Doctor to come up with a plan. He wrote down 4 steps he was going to take to try to figure out what was wrong.

#1 Do a Sitz Marker Study and a Gastrografin Enema . Until this point the only x-ray Greysen had ever had was when he was 1 day old. Not even when we had seen the specialist at 18 months. Such a simple step that could have given us a clue a lot sooner. This explains a Sitz Marker study and this explains a Barium Enema Xray. Greysen thought the sitz marker study was cool because he got to swallow plastic shapes!

 #2 Draw some blood and test for Celiac's Disease. I was pretty sure this wasn't the case but I was happy to let them test for anything. 

#3 Do a full bowel clean-out after all the xrays to be sure we were starting with a completely cleaned out colon.

#4 Rule-out an allergy by starting with Dairy. Greysen had to go 3 weeks on a dairy free diet. If you've ever had to do this Im so sorry. Its expensive and extremely difficult. There is dairy in EVERYTHING. Its in caramel colorings which happen to be in Red Robin French Fries. Its literally in things that you would have no idea! And then add in the fact that people in random places just hand your kids treats without asking. For three weeks I was a nut. I'm so thankful for our family that helped with the cost by buying him almond milk, yogurts, and coconut ice cream. The biggest help was when Greysen's Aunt Shani looked up some special recipes and made some things just for him. She filled the freezer with homemade pizza pockets, pretzels, and chocolate chip cookies. It meant so much to us but especially to Greysen......FYI vegan cheese is absolutely disgusting!

Before we left the office Greysen got his blood drawn for the first time. Getting your 5 year olds blood drawn is not fun. Poor guy had to be held down and bribed but they did finally get some blood. They gave him an awesome toy when we left. So now Greysen just had to wait a few days for the xrays and wait on the blood work to come back.....