Around the same time Alex was diagnosed with Cushing's Disease she was also diagnosed with Crohn's Disease. I'm still not sure I buy this one, and actually her GI doc isn't so sure either. Alex started seeing a local ped's GI doctor back in 2003. At that point in time she was having bouts of abdominal pain and what she would describe to us at the time as "throwing up in her mouth". This eventually led to a diagnosis of irritable bowel (characterized by intermittent constipation and diarrhea), and of acid reflux. Down the road a bit they scoped her and gave her the label of erosive esophagitis. Symptoms waxed and waned over the years and she tried lots of different meds. The next time they scoped her they added gastritis as a diagnosis. A few years later they scoped her again, had her do a "pill camera" and they also ran an upper GI with small bowel follow through. This round of testing brought us to the Crohn's diagnosis. By then (about a year ago) Alex had scarring and lesions all the way through her digestive system; esphagitis, gastritis, ileitis, and proctitis. Gee, I guess this would explain the pain?
So now here's the question...does she really have Crohn's or is this all caused by Cushing's? Crohn's is often treated with steroids; Alex has an abundance of steroids, except when she is in a low cortisol cycle, then she has sub normal levels. Could her body be trying to treat itself by producing excess cortisol? Or, could the Crohn's not exist at all and the GI symptoms are just triggered by the cycling steroids in her body?
We may get some answers once she has the BLA. After surgery she will be on steroids for life. It will be interesting to see how it all works out. I hope and pray once steroid levels are normalized in her body her GI symptoms will disappear. My biggest fear? That she really does have Crohn's and that steroid replacement post-op will be a nightmare to manage, with more needed every time the Crohn's flares up.
Rene,
ReplyDeleteIf she really does have Crohn's there are now better things to treat it than steroids. So if it comes to that talk to me. I'm taking immuran and it works great for me.
She is currently on Lialda and Nexium. Sometimes it seems like it's working, but she can quit taking the meds and still have periods of remission. It's just too hard to sort out now, too many variables. We will come to you if we need to eventually!
ReplyDeletehey mom i found you!
ReplyDeleteI've been a Crohn's patient for 24 years, and something doesn't add up in their myriad of diagnosis'. Did they rule out Ciliac Sprue (or Ciliac Disease)? Its a simple, but uncommonly thought of, blood test that sometimes gets over looked and can be confused with Crohn's due to the wearing down and ulceration of the small bowel from prolonged Gluten intake. Ciliac is a Digestive disorder whereby the GI Tract cannot breakdown Gluten and is sometimes referred to as a Gluten Allergy, and the solution is a Gluten Free Diet. Good luck.
ReplyDeleteThanks Moose,
ReplyDeleteYes, she was tested for Celiac. They ran the blood test several times and also did the endocopies several times to look for the internal signs. Just to top that off we tried a gluten free diet for 2 months to confirm.
Thanks for your input!
Ok, at least they ruled that out. Sorry to hear its been that tough on you both, and wish I could offer up more suggestions.
ReplyDeleteFor me with Crohn's, minding my diet and exercise have been key, but even I have setbacks occasionally. Since most IBD's have a stress and anxiety trigger to them, burning them both with vigorous exercise really does me wonders.