Amber Hixson is mom to 9-year-old Braxton, who is living with Crohn’s and is on the SCD Diet. Amber’s story is a heart breaking one. I sobbed when I read it, but unfortunately it is too common amongst our children with IBD today. As difficult as it is to read, it’s important that we appreciate the pain and struggle that not only the kids, but the parents (especially the moms) endure, as they face chronic illnesses like Crohn’s and Colitis. There is much to learn in Amber’s story, about the use (or perhaps overuse) of pharmaceuticals to treat IBD, diet & nutrition and it’s role in healing, and the undying, strength and determination that mothers like Amber have to protect and heal their children.
March 11, 2015
That’s the day when life as we knew it, changed forever.
My 7-year-old son, Braxton, went to the bathroom and there was bright red blood in his stool. I reached out to a GI doctor who I trusted and liked, for advice. Strangely enough I sent him pictures of his bowel movement via Facebook messenger. He suggested just watching it for now, and seeing how things went.
About a month went by. Life was busy, as I was pregnant with our third child.
April 13, 2015
We were at Target, getting the last few items we needed for our baby girl’s arrival. She was due in June and she was our first girl. We already had Braxton, who was 7, and Cohen who was 2 1/2.
We were all the way in the back of the store, and I remember looking at Braxton’s face, which had a panicked look that said, “I have to go now!”. There was no way my 8-month pregnant self could run through Target, so my husband took off with him in search of the bathroom. Not long after, I started receiving pictures from my husband of what looked like pure snot, laced with bright red blood.
I knew it wasn’t good.
I sent the pictures to the GI doc again, and we immediately got an appointment that week. After the initial exam, the doctor said he wanted to scope Braxton and that he expected to find polyps. We scheduled the colonoscopy and reviewed our instructions for clean out. After the appointment, we were leaving town for a short vacation, so we had the fun task of trying to explain to our 7-year-old son what a colonoscopy was during the whole trip.
At first, Braxton was very nervous and asked a thousand and one questions. He finally accepted it and we had a great time away with the family.
April 23, 2015
We were all nervous, but hopeful. I was about 8 months pregnant with our third child and trying my best to remain calm and positive. I knew my body and sweet baby girl baking in there didn’t need to be stressed. We ended up being the last procedure of the day and were told Braxton would only be gone for a short amount of time. Well, it was forever. My heart was beating out of my chest. Finally, our doctor came in to explain what he found.
He told us that he didn’t find any polyps, but that he believed Braxton had Colitis. The biopsies would tell us if it was Ulcerative Colitis or Crohn’s Disease.
I froze and went numb. I know I had the blankest look on my face.
I was in complete shock.
My mind was saying there’s no way my sweet, energetic, intelligent son had a disease, especially one there’s no cure for and will cause him a lifetime of misery.
The doctor asked if we had any questions and my mouth muttered “no”. I had a ton of questions, but I was just too emotional to get any of them out. I just needed the doctor to leave the room so I could cry. I wanted my husband to wrap his arms around me, to let me cry and then get me to my sweet boy in recovery.
When I got to Braxton, he was still out cold. I just wanted to pick him up and hold him tight.
A week or so later, our GI doctor called and gave me the heartbreaking news that Braxton had Crohn’s Disease.
The first medication Braxton was given was 40mg of prednisone. He gained 12lbs in two weeks and his cheeks looked like they were going to pop. His face just didn’t even look like him anymore.
The stress of everything landed me in the high-risk labor and delivery unit at 33 weeks pregnant. We stayed there a couple of days and finally got to go home on “light duty”. Braxton was already extremely hyper active and now on high dose steroids, I had my hands full. Let alone, a 2 1/2 year old who only runs on “wide open”, there was no such thing as “light duty” in my house. But, we were able to keep little miss “diva princess” in place until term.
June 5, 2015
We welcomed Kynzlie Marie into our family.
Braxton was so in love with her. He is an amazing big brother. After settling in at home with a new baby girl, it seemed like things went smoothly for a while. We tapered down on the steroids and tried 6MP. That didn’t last long, as 6MP shot Braxton’s liver. Next was Pentasa. Eventually insurance denied Pentasa, and it being $900 a prescription, we couldn’t afford it, so we switched to something else. I can’t even remember all of the medications we tried. I think Lialda was next.
When Kynzlie was only 6 months old, we found out we were having another baby. Yes, a BIG shock. This would be baby number 4. I was scared to death. We already had so much going on with Braxton and his Crohn’s; our 3 year old had asthma and our 6-month-old baby girl was allergic to soy and had milk protein intolerance. So my plate was overflowing, to say the least.
Our Doctor Decided it was Time for Remicade
After another trip to the ER for blood in the stools and a weeks worth of diarrhea, our doctor decided it was time for Remicade.
He said Braxton wasn’t responding to oral medications and becoming steroid dependent.
He then said the word that scared my mommy heart to death “Methotrexate”! All I could think of was CHEMO!
The thought of having to inject my son at home every week with chemo really made my stomach churn. But our doctor explained that it would help keep his body from forming antibodies against the Remicade and that it was used quite often for Crohn’s patients.
I Needed to Have an Emergency Delivery – But What About Braxton’s Remicade Infusion?
September 13, 2016
I had a check up with my OB. I was having contractions that morning and noticed I wasn’t feeling any movement from the baby. They hooked me up to a monitor and the doctor became as concerned as I was. I was by myself that day and trying to remain calm.
I was told that I needed to have an emergency delivery and get my baby out that day and fast.
But then my mind quickly shifted to Braxton. He was at school and it was Methotrexate day for him. No one else had ever given him his injection before and I knew he wouldn’t be comfortable with change. And the next day was scheduled to be his FIRST Remicade infusion.
All of these things were racing through my mind, while I was standing in my doctor’s office swaying back and forth in labor. All I could think about was Braxton and my other children.
I started barking orders and getting everyone and everything organized, telling my husband what he needed to go home and get, what car seats he had to move, etc. Next on the list was to call a friend of mine who is one of the nurses in our GI office to see if she would swing by our house that night to do Braxton’s Methotrexate injection. Braxton knew her well and she was the one who taught us how to do it at the office. Of course she was an angel and agreed.
Finally, it was time to have my baby.
That evening with no epidural (I’m proud to admit), I delivered our sweet little Brody. Greg (my husband) and all of the rest of the kids came to the hospital to meet him. Braxton was so excited to be a big brother again.
The next morning was Braxton’s Remicade appointment. We were smitten with our new baby boy, but heavy hearted because I couldn’t be with Braxton at his Remicade infusion.
Thankfully, my mother (nanny) took him. She sent me pictures during the 5-hour process. After Remicade, Braxton came back to the hospital to see us and hold his baby brother for the first time. Once again, he was so brave and strong. Braxton had Remicade again 2 weeks later and then 4 weeks and 6 weeks.
Finally, he started to feel better and played fall ball for the first time ever. He did great.
I Quit Counting Bowel Movements After 20 Times
November 9, 2016
Just when we thought things were looking up, Braxton had blood in his stool again. Then, it got worse. He started having pain like he had never had before. The doctor decided to increase the Remicade, but Braxton continued to get worse. The bowel movements were increasing in number and becoming less and less like poop at all. He was waking up at 2 a.m. and 5 a.m, to literally run through the house to go to the bathroom. It got to the point he couldn’t make it and accidents were becoming more frequent. We made the decision to buy pull-ups for our 9-year-old son. We knew this would be demeaning to him, but discussed it as best we could with him and he was actually pretty accepting of it. Once again he was put back on the Rowasa enemas.
There were days my husband and I would quit counting bowel movements after 20 times.
We watched him crawl on his hands in knees in so much pain.
There were days he couldn’t get off of the couch.
My husband would carry him from the couch to the bathroom or to the car for doctor appointments. He ate less and less and got thinner and thinner. Eventually we could see his ribs, his sternum, and his collarbone. He was so weak and lethargic.
Finally our GI doc decided to scope him again. This would be his third scope in a year and a half, and only 6 months from the last scope. Our doctor also decided he was going to start him on Humira.
Read the dramatic ending of Amber’s story in Living with Crohn’s, Part 2: There is a Smell to Death.
I believe that we all learn from one another by sharing our stories. I also found it very cathartic and empowering to share my narrative. If you would like to participate and share your story, please contact me at firstname.lastname@example.org.