Miss Diagnosis: Crohn's

Thursday, March 12, 2009

Dual Diagnosis- Crohn's Disease

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.

Transphenoidal Pituitary Surgery- From the UCSF web site

What happens during surgery?
The surgical removal of the pituitary adenoma is performed by a technique called a transsphenoidal operation. The word 'transsphenoidal' describes the path the surgeon follows to reach the pituitary gland. The word comes from 'trans', meaning 'to cross or pass through', and 'sphenoid', the name of the cavity (the sphenoid sinus) that is passed through to reach the pituitary gland. Newer techniques and improvements in technology now allow removal of these tumors without the need for an incision under the lip or within the nostril. The surgeon begins the approach by entering through the nostril on one side. The surgeon uses a brilliant fiber optic light to illuminate the internal anatomy, a microscope to magnify the area of surgery to 12 times the actual size, and very tiny microsurgical instruments especially designed for this particular operation. The surgeon guides the surgical instrument into the nasal cavity and an opening is made in the sphenoid bone. The sphenoid sinus is entered, and then an opening is made in the wall of the sella turcica to expose the pituitary gland. The adenoma can be readily distinguished from the normal pituitary gland tissue and is removed without removing the normal gland. After the surgeon removes all the tumor tissue, the small cavity that is left is treated with alcohol to destroy any tumor cells that may remain. This cavity is then sealed, sometimes with a piece of fat that the surgeon removes from the patient's abdomen. The surgeon then applies a biological 'glue' that helps seal the pituitary area from the nose and promotes natural healing. No nasal packs are used with this approach.