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Dear Pouch Fam,

Dr. Shen wanted to share this note with our J-pouch community, to answer general questions and concerns about COVID-19, and to empower our community during this time of uncertainty. 

For those unable to access the link, the text of the letter is pasted below:

March 27, 2020
To: Our Pouch Community
From: Your Dr. Bo Shen of Columbia University Medical Center
RE: Precautions and Care During COVID-19 Season

Rapid spread of the virus has caused panic in our pouch community as well as general public. Based on available data and personal experience, here are my thoughts:
• No evidence showing that our pouch/IBD patients carry a higher risk for the virus than general population
• Those on immunosuppressive medications, such as biologics (Remicade, Humira, Stelara, Entyvio, etc), corticosteroids, Imuran/6MP/methotrexate may continue these medications, but exert extreme cautions (see below). Due to logistic reasons, you have to delay few days of infusion, it is OK.
• Adequate rest/sleep (you may consider open window to get fresh air)
• Hydration, hydration, hydration with sports drinks, to keep urine in light color • Since most pouch disorders do not cause fever and if you have fever along with sore throat or cough, you should be tested for the virus and start self isolation. If you experience difficulty in breathing, you need come to nearby hospital.
• Data from Asia have shown that COVID-19 infection may cause gastrointestinal symptoms. If you have significantly increased bowel frequency and/or liquid stool along with fever, you should be tested for the virus too.
• Wash hands and wipe and/or spray with disinfectants to surface touched. No not directly touch face, eyes or nose.
• In addition to keep social distance at public place, wear a surgical mask (or N95 with other personal protective equipment if you are having direct contact with confirmed or suspected COVID-19 infected persons) is a good idea. Keep in touch.

I can be reached at: FYI: We offer virtual visits.

Bo Shen, MD NPI Number: 1497712814

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Most people don’t get a fever with pouchitis. He is recommending testing if you have the combination of fever and significant GI symptoms. It’s certainly true that in the current chaos some testing rules/facilities may require that you be coughing to get tested, but others will just require a doctor’s order and an appointment. Lots of people are getting tested at this point, though IMO it’s not nearly enough.

Thank you for this information.  My boyfriend tested positive and I have symptoms.  He was very ill and so when we went to the hospital he was able to get tested.  I'm not as ill and am in Indiana and they aren't testing anyone who isn't a medical person or isn't in the hospital.  I've had this on and off for several weeks.  I was put on antibiotics for a secondary infection and was feeling pretty good.  I finished the antibiotics and now have a low grade fever, diarrhea, cough. I haven't been around anyone except my boyfriend for weeks.  This is very frustrating.  


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