CMUSE - cryptogenic multifocal ulcerous stenosing enteritis

Posted by bkh @bkh, Jan 23, 2023

Recently had a double balloon endoscopy at Duke Hospital. Some very developed strictures were seen in multiple areas, but the area between those ulcerated strictures were perfect. Pathology was inconclusive, but the doctor thinks it may be CMUSE. Has anyone else been diagnosed with CMUSE or has any knowledge of anyone that has? Thanks!

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Hello @bkh and welcome to Mayo Clinic Connect. I found some information that you may find useful to review on CMUSE:
- Examining the clinical presentation and imaging characteristics of cryptogenic multifocal ulcerous stenosing enteritis: https://www.mayoclinic.org/medical-professionals/digestive-diseases/news/examining-the-clinical-presentation-and-imaging-characteristics-of-cryptogenic-multifocal-ulcerous-stenosing-enteritis/mac-20526594

This is written for medical professionals, but I found the illustration to be helpful as well.

Will you be referred to a specialist for a formal diagnosis?

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Thank you for the information and I will read it in a little bit. I'm following up with my VA doctor in Knoxville who had referred me to go to Duke Hospital for the double balloon endoscopy, And I'm going to ask him to send my information out through the VA system to see what information we might can find. I came to the Mayo site because I have been told that Mayo has a very good record with gastro issues. Right now I'm kind of a mystery.

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@bkh

Thank you for the information and I will read it in a little bit. I'm following up with my VA doctor in Knoxville who had referred me to go to Duke Hospital for the double balloon endoscopy, And I'm going to ask him to send my information out through the VA system to see what information we might can find. I came to the Mayo site because I have been told that Mayo has a very good record with gastro issues. Right now I'm kind of a mystery.

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Mayo clinic Drs are thorough, they will review all that you go through. It has been good to hear what my husband's issues are but has been tough not to get answers as to what he can do to feel better. He had duodenal lymphoma which extended to the next portion of the small bowel. there is no further cancer there, but his bowel has suffered from the chemo and becomes inflamed at intervals and causes pain as well as partial small bowel obstruction, this is tough watching him go through this and when he does feel good then he worries about when it is coming back. We pray for answers and help. hoping that you find answers for your issues.

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