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- Nov 12, 2011
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- 2,412
Today marks seven years of DS being diagnosed with Crohn's and Celiac. I'm not sure I've ever shared his full story? Read on, if interested. Maybe my mistakes can helps someone else.
In retrospect, the signs started in 1st grade/2nd grade. He went from being one of the tallest and biggest kids in his Kindergarten class to the absolute smallest. His pediatrician made note of this and we were "watching". No other symptoms aside from lack of growth.
The summer before third grade he had an explosive bout of diarrhea in public. After that the stomach aches started, but no other episodes of diarrhea. School started and DS kept missing the school bus home because he was always in the bathroom when it was time to go. I took him to his ped again who referred us to a GI. Of course I had done some research and was prepared for Celiac. It made sense and blood work indicated it. I ruled out Crohn's because it sounded nasty and he didn't have the classic symptoms listed on all the websites. Within a couple of weeks he had scopes done and afterward his GI said everywhere the scopes touched his bowel wall, it bled. Hmm... bleeding bowel walls is not a Celiac symptom. A week later we got the double diagnosis and our world turned upside down.
The day of the scopes, DS went gluten free and we had a brand new boy within three days. It. Was. Amazing. He put on a crazy amount of weight and started growing again. His GI at the time (we're on #3 now), decided not to treat him for Crohn's since he was doing so great. Mistake number one!
All was well for almost three years and we didn't give Crohn's much thought. The summer after fifth grade, he started throwing up and we assumed it was gluten. As the summer progressed the vomiting got worse and worse, to the point where it was several times a week. His GI wasn't able to get him in for months, so we switched to GI #2 who immediately ordered an MRE. Hello, stricture! Most likely due to cycles of inflammation from the lack of treatment by GI #1.
GI #2 prescribed Pentasa, pred, low res diet, liquid diet for a bit, yada, yada, yada. This went on for almost two years. Again, he fell off the growth charts, missed a ton of school, and wasn't doing well. GI #2 was very, very anti-surgery. The only thing he wanted to do was add 6MP, to which my momma gut was saying "that doesn't feel right". Possibly mistake #2, but we later found out that class of drugs (Aza) did nothing for him anyway.
After a 14 hour vomiting marathon in 7th grade (and a significantly diminished quality of life), I took him to the ER for dehydration. We talked to GI #3 who was on call, a surgeon, and his radiologist and decided he needed surgery. They were able to determine the stricture was all scar tissue and only 3 mm in diameter. Yes, millimeters. Normal small bowel is three CENTIMETERS, hence the vomiting - no where to go but up.
Surgery and recovery went well. Again, significant weight gain and growth afterward, but still nothing more than Pentasa. He flared with classic symptoms three months later and started Azathioprine. He spent six months on Aza with minor, but not significant relief. Levels testing showed it should have been working, but with his intermediate TPMT, his GI was hesitant to change much... until the abscess showed up. Ultrasound showed there was also an internal fistula and he landed in the hospital for the third time that year. That night he started Remicade. He left with a PICC line and two more weeks of IV antibiotics.
He's been on Remicade and in clinical remission for two years now. Last spring we had his levels tested due to fatigue and loss of appetite and at eight weeks he had zero Remi in his body. He was bumped up to six weeks and 7.5mg/kg and has been doing well at that level. Blips here and there, but generally, doing well.
And here we are seven years later. Happy Celicrohnisversary!
Things I've learned:
- Crohn's doesn't go away.
- Celiac is annoying.
- Caregivers REALLY need to educate themselves.
- It's okay to change GI's.
- J-Tips are awesome.
- Kids are amazing creatures.
- Outside the Forum, no one likes to talk about poop.
- Meds are needed.
- Photos will show the changes you don't see day to day.
- MRE's suck.
- Pediatric and adult Crohn's are two different worlds.
- Anger is okay.
- Moms need sleep.
- I would do anything for a cure.
... the end.
In retrospect, the signs started in 1st grade/2nd grade. He went from being one of the tallest and biggest kids in his Kindergarten class to the absolute smallest. His pediatrician made note of this and we were "watching". No other symptoms aside from lack of growth.
The summer before third grade he had an explosive bout of diarrhea in public. After that the stomach aches started, but no other episodes of diarrhea. School started and DS kept missing the school bus home because he was always in the bathroom when it was time to go. I took him to his ped again who referred us to a GI. Of course I had done some research and was prepared for Celiac. It made sense and blood work indicated it. I ruled out Crohn's because it sounded nasty and he didn't have the classic symptoms listed on all the websites. Within a couple of weeks he had scopes done and afterward his GI said everywhere the scopes touched his bowel wall, it bled. Hmm... bleeding bowel walls is not a Celiac symptom. A week later we got the double diagnosis and our world turned upside down.
The day of the scopes, DS went gluten free and we had a brand new boy within three days. It. Was. Amazing. He put on a crazy amount of weight and started growing again. His GI at the time (we're on #3 now), decided not to treat him for Crohn's since he was doing so great. Mistake number one!
All was well for almost three years and we didn't give Crohn's much thought. The summer after fifth grade, he started throwing up and we assumed it was gluten. As the summer progressed the vomiting got worse and worse, to the point where it was several times a week. His GI wasn't able to get him in for months, so we switched to GI #2 who immediately ordered an MRE. Hello, stricture! Most likely due to cycles of inflammation from the lack of treatment by GI #1.
GI #2 prescribed Pentasa, pred, low res diet, liquid diet for a bit, yada, yada, yada. This went on for almost two years. Again, he fell off the growth charts, missed a ton of school, and wasn't doing well. GI #2 was very, very anti-surgery. The only thing he wanted to do was add 6MP, to which my momma gut was saying "that doesn't feel right". Possibly mistake #2, but we later found out that class of drugs (Aza) did nothing for him anyway.
After a 14 hour vomiting marathon in 7th grade (and a significantly diminished quality of life), I took him to the ER for dehydration. We talked to GI #3 who was on call, a surgeon, and his radiologist and decided he needed surgery. They were able to determine the stricture was all scar tissue and only 3 mm in diameter. Yes, millimeters. Normal small bowel is three CENTIMETERS, hence the vomiting - no where to go but up.
Surgery and recovery went well. Again, significant weight gain and growth afterward, but still nothing more than Pentasa. He flared with classic symptoms three months later and started Azathioprine. He spent six months on Aza with minor, but not significant relief. Levels testing showed it should have been working, but with his intermediate TPMT, his GI was hesitant to change much... until the abscess showed up. Ultrasound showed there was also an internal fistula and he landed in the hospital for the third time that year. That night he started Remicade. He left with a PICC line and two more weeks of IV antibiotics.
He's been on Remicade and in clinical remission for two years now. Last spring we had his levels tested due to fatigue and loss of appetite and at eight weeks he had zero Remi in his body. He was bumped up to six weeks and 7.5mg/kg and has been doing well at that level. Blips here and there, but generally, doing well.
And here we are seven years later. Happy Celicrohnisversary!
Things I've learned:
- Crohn's doesn't go away.
- Celiac is annoying.
- Caregivers REALLY need to educate themselves.
- It's okay to change GI's.
- J-Tips are awesome.
- Kids are amazing creatures.
- Outside the Forum, no one likes to talk about poop.
- Meds are needed.
- Photos will show the changes you don't see day to day.
- MRE's suck.
- Pediatric and adult Crohn's are two different worlds.
- Anger is okay.
- Moms need sleep.
- I would do anything for a cure.
... the end.
best wishes n hugs ..
