• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Still waiting for a diagnosis

I’m 67 years old. I was diagnosed with IBS in my 20s. I began having bowel obstructions 4 years ago. I’d go to the ER in excruciating pain, they would admit me, go through the protocol and send me home a few days later. I had all the tests, pill camera, enteroscopies, colonoscopies, etc. Discovered in a routine physical that I had severe anemia from blood loss. They found some narrowing in the lower part of my small bowel. After my 4th or 5th obstruction, the surgeon decided to operate but did not find any scar tissue on the outside. I finally went to a gastroenterologist at a world renowned hospital a couple of hours away, who reviewed my imaging and sent me to an equally impressive colorectal surgeon, who was able to find the strictures. My SB was resected in 3 places. I had surgery 4 months ago and am doing much better. The pathology report did not say that I was diagnosed with Crohn’s, but it said that there was active inflammation. The surgeon said no Crohn’s, but the gastroenterologist isn’t so sure. Just wondering if anyone else has been through something similar? I don’t want a diagnosis of Crohn’s but I would like to know the cause of all this.
 
Location
San Diego
My case is not exactly like yours but has some similar elements. I had right side abdominal pain for years - not severe but enough to be annoying. Then my first serious symptom was severe anemia detected by a routine physical. I was ordered to go immediately to the ER for emergency transfusions. Then began the hunt for the blood loss. There had not been any visible blood in the stool or other signs of blood loss. It apparently just seeped away over the course of months.

Colonoscopy and biopsies were normal but review of abdominal x-rays taken a year earlier when I had a ruptured appendix showed a mild thickening of the small bowel in the ileal region. CRP and sed rate were normal - no inflammation detected by blood tests. Finally, a capsule camera endoscopy showed a few aphthous ulcers in the ileal region. MRE also found inflammation in 6 cm of the terminal ileum. My GI diagnosed mild Crohn's that he treated with occasional short courses of budesonide.

I continued with "mild Crohn's" for about 5 years until the disease decided to up its game by attacking the membrane around my heart and produced an extra-intestinal manifestation of acute pericarditis. I underwent an open-chest pericardiectomy to remove the inflamed tissue, and since the disease was no longer classified as mild the GI put me on Stelara to knock the Crohn's down. Things have been quiet (no symptoms) since going on Stelara two years ago.

In your case having severe anemia combined with strictures and small bowel inflammation would IMO be highly suggestive of Crohn's. But to get on any Crohn's drugs, especially expensive biologics, you will probably need a formal diagnosis of Crohn's.

Are you on any medication? What does your GI plan to do next?
 
No they didn’t put me on any medication. I go back for more imaging and to see the gastroenterologist a year from my resection surgery. He said that he’ll be looking for inflammation and of course scarring from the surgery. I’m just wondering what else they need to see in order to make the diagnosis. And it’s confusing because the surgeon said there was no Crohn’s.
 
Top