- Joined
- Apr 11, 2022
- Messages
- 104
Still don't know if DS has Crohn's, but he did have small ulcers and erosions in illeum (found through capsule endoscopy) and the occasional blood in stool disappeared once he was on entocort. He was also on high dose PPIs at same time for significant reflux/GERD damage. He finished entocort by December. Still no blood. Had follow up EGD mid December and esophagus damage had reversed. Just one very small swelling. Biopsies normal. He was slowly weaned off PPIs (which are very difficult to get off in high doses due to acid surges) and was completely off by mid February. Finally acid surges stopped by March-that was challenging. The only symptoms that have persisted throughout steroids and PPIs is frequent bowel movements (well formed) and false alarms-even at least once after he goes to bed.
March 1st had a little bright red blood in stool for first time since before steroids-only once-just a few drops. Normally wouldn't worry about bright red, but long before this journey shade of red varied. Today, just had some dark red in stool and light red another time. Inspected by doctors a number of times for fissure/hemorrhoid and never had. I am wondering if going off PPIs and subsequent acid surges caused some erosion again. We do repeat calprotectin next month and meet with doctor a few weeks later. Will message her if red in stool continues. He also does sometimes have undigested vegetables in stool, but I read that can be normal for things like carrots? Not sure what to ask when we meet, but if he does need an acid blocker I will find out if the non-PPIs might be an option. Really hoping he won't need another colonoscopy for a long time since the prep made him so ill. Current doctor mentioned if he shows signs of Crohns once off steroids we might need to start treatment. She isn't a fan of the milder meds like mesalamine and she only sees results with biologics, but her patients tend to have more severity of symptoms so if it got to that she would want a second opinion.
Thoughts? Questions I should ask? Should I have DS take a photo of any BMs at home with blood or is that TMI? I still post here because former doctor thinks we are never out of woods for Crohn's and the doctor at BCH who did second opinion over summer said he has seen kids with similar presentations develop Crohn's, but not every kid.
March 1st had a little bright red blood in stool for first time since before steroids-only once-just a few drops. Normally wouldn't worry about bright red, but long before this journey shade of red varied. Today, just had some dark red in stool and light red another time. Inspected by doctors a number of times for fissure/hemorrhoid and never had. I am wondering if going off PPIs and subsequent acid surges caused some erosion again. We do repeat calprotectin next month and meet with doctor a few weeks later. Will message her if red in stool continues. He also does sometimes have undigested vegetables in stool, but I read that can be normal for things like carrots? Not sure what to ask when we meet, but if he does need an acid blocker I will find out if the non-PPIs might be an option. Really hoping he won't need another colonoscopy for a long time since the prep made him so ill. Current doctor mentioned if he shows signs of Crohns once off steroids we might need to start treatment. She isn't a fan of the milder meds like mesalamine and she only sees results with biologics, but her patients tend to have more severity of symptoms so if it got to that she would want a second opinion.
Thoughts? Questions I should ask? Should I have DS take a photo of any BMs at home with blood or is that TMI? I still post here because former doctor thinks we are never out of woods for Crohn's and the doctor at BCH who did second opinion over summer said he has seen kids with similar presentations develop Crohn's, but not every kid.