As I Write This

As I write this post my son and I are in his hospital room. He is one day post op from his colostomy placement. I am both relieved and anxious at the same time. On one hand his father and I are so relieved that we have finally found a reason for the struggle we have had with Jack's constipation issues. It has been a long 8 years of feeling like we were failing him in some way. Now we have a reason, a plan, and a medical team backing us up. We are anxious because we are having to watch our little man go through procedures and surgeries that no little 8 year old boy should have to endure.

Jack was born without incident. He was a colicky baby, but I attributed that mostly to the fact that I had chosen to bottlefeed him, where as his older sister was breastfed. Two months after his birth his father deployed to Iraq and I was at home with a 17 month old daughter and my 2 month old Jack. Challenging? Yes! However, I had recently left the army myself and I had been in danger of deploying up until the last day of my service obligation. As hard as it was staying home with 2 babies, it was easier on my than it would have been to leave them and support a war going on half way around the world.

Most kids who are diagnosed with Hirschsprungs Disease are diagnosed in their infancy. They do not pass meconium stool in their first days of life. Jack did, and for a while I had very little to worry about. Our first health concerns with Jack were not related to his intestines. They were of the ear infection variety. At his first 2 week appt it was discovered that he had a double ear infection. This started a cycle of ear infection / fever, trip to the doctor, 10 or so days of antibiotics, one week of freedom, and then a fever and a return of the antibiotics . . . at 15 months of age he got his first set of ear tubes. They were helpful, but ear infections continued, especially in his right ear, we could just tell a lot sooner because the infected fluid would drain and we knew more antibiotics were in store for us. After about another year of the infections, Jack had the ear tubes replaced and his adenoids removed. This is standard for ENTs to do, I was told, since the adenoids are a source and hang out spot for fluids which then gets infected and affects that ears. After this set of ear tubes we may have had one or two ear infections, but that stopped. A little speech therapy and we were on our way.

Now we had a 2 1/2 year old boy that we were trying to potty train. The antibiotics had always given him bad diarrhea and diaper rash, and now that we were out of that cycle I thought it was a good time to get the potty training down. It was frustrating to say the least. He just couldn't seem to "go poo". He would hold it in until he suddenly could not seem to hold it and he would pass a very large stool that was extremely painful. It was no wonder that he did not "want to go" in our eyes. The pediatricians agreed, and we tried all the tricks. Prune juice, benefiber, whole grains, veggies, water, sitting on the potty after meals, you name it we tried. Another frustrating symptom he would have would be wetting himself after using the potty. He would go pee in the potty and then 10-15 minutes later he would be just a little wet. I found out later that is is very typical of boys who are constipated, that their full intestines would put such pressure down on their bladder that it would almost be forced out.

This continued on. At times it seemed we would be managing the pooping, other times it was managing us. For the next few years it kept getting progressively worse. I sometimes think that if we had been in one location, with one pediatrician, instead of travelling from pediatrician to pediatrician then we may have gotten some answers sooner. In October, when he was 6 years old he was quite sick. He did not poop for a month. An Xray showed a very backed up intestinal tract with a very dialated large intestine. The solution was the magical Miralax, which for us never proved to be as miraculous as everyonFinally, right after he turned 7 we found a pediatrician that was a bit more agressive with treatment to clear constipation. We were admitted for an NG tube and a clear out with Go Lytely. It took nearly 7 liters, and we weren't cleared out. It took a series of enemas over the next few days to finally break up everything.

We had finally achieved a clean out, and we were confident that if we kept up with the miralax, extra fiber when needed, and a good tracking system that we could help his bowels heal and that normal function would return.We considered a referral to a pediatric gastroenterologist, but we decided to try this route first.  We tried our best, but it didn't work. By October we felt we were back at sqaure one. His belly was as round and distended as ever. He was growing thinner and thinner. His sister who was only 15 months older than him weighed a good 30 lbs more than he did. His appetite was sparse. It seemed his tummy filled up quickly. We made another appointment and obtained a referral to the pediatric GI doctor. I soon called and made an appt.

After taking a history, I am believe the doctor was convinced that he was another case of stubborn constipation. She handed me another article about miralax, outlined a diet plan that involved 30-40 grams of fiber per day, but also put in an order for a barium enema study. She did want to rule out Hirschsprungs. I had been told by previous pediatricians that it wouldn't be Hirschsprungs because of his relatively normal stooling in his infancy. When I went home and did the customary internet search, he fit the symptoms of HD very well. I thought to myself at that point that I would be very surprised if the tests showed he did not have HD.

We made an appointment for that at the nearest children's hospital. That day I was so nervous. It was not an easy procedure for my son to endure. I was hoping that if he did indeed have to endure these procedures, that we would come away with some difinitive answers. "Even if they show that everything is normal, at least we will know that" I thought to myself. It was not long into the procedure that the staff saw how incredibly b acked up he was, and soon after the pictures were obtained, the radiologist appeared. He asked me a few questions, and then I asked him if he saw anything that indicated a possible reason for th econstipation. He showed me some characteristic signs of Hirschsprungs. He met with me once again after we were completely done with the test, and showed me again. He stressed however that the true test would be a rectal biopsy to look for the presence of the nerve cells. If he had them, then he did not have HD. If they were absent, then it was HD.

Our scheduled rectal biopsy was about 1 1/2 weeks later. It was put off a bit because of the Thanksgiving holiday. The week after Thanksgiving my mom came down to watch my 3 other children so that I could be with Jack at the hospital. He had an over night stay that involved an NG tube, more Go Lytely, and various enemas. They did not clear him out, but the next day they did the biopsy (plus a little manual disimpaction since he was under anesthesia anyways) and we had a follow up appt scheduled for a week later. The next eveneing I got a call from the Pediatric GI doctor that they could not find any nerve cells in the biopsy that was taken, that he did have HD, and that she was sending my son to be in the care of a pediatric surgeon. Relief, and anxiety, all rolled into one.

The surgeon we met with was friendly and efficient. I was impressed with is thinking. He felt that since it took so long to diagnose Jack, chances were that he may have a very small section of bowel that was affected. If much more had been involved, we certainly would have had much more serious complications earlier on. He wanted to repeat the biopsy that was done before, and at the same time take some samples that were a bit further up to see if we could find a segment that was near the rectum that had cells. If we found cells then we would have considered doing a rectal myomectomy. The hope would be if a small portion of his rectal muscle was removed, it would make it easier for the functioning intestine to push out the stool. The parts of the intestine that do not have the nerve cells remain tense and that is why it is difficult to pass stool when you have HD.

This was an outpatient procedure under general anesthesia. There were no NG tubes or enemas. You may as well have told Jack he was going to go to the nuseum. It was a very easy day for him. We called a few days later to get the results, there were no nerve cells in either biopsy, so the route would have to be a temporary colostomy with the plan to perform a rectal pull through a few months later. Again, I was relieved that we had answers, and anxious about the next steps.

Armed with a large number of praying family and friends, a shadow buddy doll, a pooh blankie and a husky webkinz doll,  we entered the hospital on a Wednesday. We were going to attempt yet another clean out  before the colostomy procedure. It was pretty obvious to me (and to Jack) that he interventions were not going to produce a cleared bowel for the operation the next day. Nonetheless we did the best we could and off to surgery he went the next day.