Category Archives: travel

COVID-19 Resources For People Living With IBD

Coronavirus (COVID-19) Resources For People With IBD

People with inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, or indeterminate colitis) are understandably concerned about the novel coronavirus, and the disease it causes, COVID-19, spreading in their community. People who have certain medical conditions and/or are receiving immunosuppressive medications may be at a greater risk of complications for COVID-19. There are some guidelines put out specifically for people with IBD that can help in making decisions during this time. On this page you will find trusted and verifiable resources that help you as you make choices regarding travel, medications, and everyday life during the pandemic.



April 2, 2020 Update

There are now 239 reported cases of COVID-19 in people with IBD. There have been 11 deaths: 8 of these were in people over the age of 65. See the update from the SECURE-IBD Registry.

The International Organization For the Study of Inflammatory Bowel Disease met on Friday, March 20th. Some of the recommendations from this group were reported by David Rubin, MD of the University of Chicago via Twitter (see original Tweets or view the thread here) and included:

  • Having IBD is not a risk factor for infection with the novel coronavirus (SARSCoV2) or for developing the disease COVID-19
  • Active inflammation MAY increase the risk of infection
  • Patients should stay on their therapies in order to stay in remission
  • Diarrhea is a common symptom in patients with COVID-19 and in the small number of people with IBD who have developed COVID-19
  • Infusion centers with an appropriate screening protocol are OK
  • Elective switching from IV to injection therapy is not recommended at this time
  • The safety of home infusions is uncertain. (An infected home infusion nurse could be less safe than an experienced and secure infusion center.)
  • It’s recommended to delay/postpone all non-essential endoscopic procedures
  • Prednisone is not recommended, as this drug may increase risk of infection
  • Tapering prednisone safely is generally advised, but especially if a patient has been exposed to the novel coronavirus (SARS-CoV-2) or tests positive

General Guidelines for People With IBD

  1. Keep taking your medications. Many recommendations advise that people with IBD not stop their medications. Most IBD medications do not leave the body in the short-term and stopping medication could lead to a risk of an IBD flare-up. Talk to your physicians about your specific needs.*
  2. Risk of infection may not be increased. Receiving immunosuppressant medications does not increase the risk of contracting SARS-CoV-2.†
  3. Practice social distancing. Stay home as much as possible, especially avoiding large crowds in places with no ventilation, practice good hygiene and cleaning methods (see below), and follow other recommendations from your local public health officials.
  4. Use telehealth services. Ask your IBD physicians about conducting follow-up visits using telemedicine (such as over the phone or a video chat).
  5. Reschedule elective procedures. Consider postponing elective colonoscopy or other procedures.‡
  6. Call ahead if you are sick. If you get sick with COVID-19—like symptoms (see articles below for more information) call your physicians to get instructions. If you experience difficulty breathing or shortness of breath, persistent pain or pressure in the chest, new confusion or the inability to arouse, or bluish lips or face, seek medical help immediately.§
  7. Contact the Crohn’s and Colitis Foundation’s IBD Help Center for questions, or see links to international Crohn’s and colitis patient advocacy groups below.

Sources:
*Crohn’s and Colitis Foundation. IBD patient guidance. CrohnsColitisFoundation.org. 12 March 2020.
†Crohn’s and Colitis UK. Coronavirus (COVID-19) advice. CrohnsandColitis.org.uk. 13 March 2020.
‡Mao R, Liang J, Shen J, et al. Implications of COVID-19 for patients with pre-existing digestive diseases. Lancet Gastroenterol Hepatol. Published online March 11, 2020. doi:10.1016/S2468-1253(20)30076-5
§Centers for Disease Control and Prevention. People at risk for serious illness from COVID-19.  National Center for Immunization and Respiratory Diseases (NCIRD). 10 March 2020.


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What to Put in an IBD Travel Kit

What to Put in an IBD Travel Kit

Living with inflammatory bowel disease (IBD) can mean it may be difficult to travel at times. There are many reasons why traveling could be challenging but one of the major problems is the lack of easy access to bathrooms. Public transportation tends to be notorious for not having restrooms and this can give people with IBD some anxiety. That’s why having a travel kit stocked and ready will help people living with Crohn’s disease or ulcerative colitis to have more confidence when making travel plans.

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IBD Is a Marathon, Not a Sprint

“Who wants an Oreo?”

A man sits near me in the road, offering Oreo cookies to the bike riders pedaling past him up a massive hill. Another man walks over and asks, “Did you give out cookies last year, too?”

“Probably,” says the man in the road.

“Well, if it was you, it was a highlight for me, getting that cookie. I really appreciated it.”

I am on the sidelines of the IRONMAN Wisconsin race: a feat of endurance for athletes who will swim 2.4 miles (3.86 kms), bike 112 miles (180.25 kms), and run 26.22 miles (42.20 km) in one day. Many of the spectators are previous racers themselves: they sport hats, shirts, backpacks, and even tattoos with the IRONMAN logo.

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There Are No Pictures Of Me

Amber as a baby

Aww. I’m a baby. Why am I holding a football? No idea. This would have been mid-70s, as evidenced by the green velour couch. It was a super comfortable couch, let me tell you. Great for building forts, too.

At the risk of sounding aged and out-of-touch, daily life was much different when I was diagnosed and even 10 years later when I had my j-pouch surgeries. No smart phones. No Internet. No digital photos. Most people didn’t have computers. A lot of people didn’t own cameras.

This is why there are no pictures of me. There are no photos of me battling ulcerative colitis in my hospital bed. No photos of my stoma. My wasted, 89 pound body. The skin peeling off the bottom of my feet. The blood transfusion. The voluminous amounts of gelatin I ate when my body could tolerate nothing else. There are no images of these things. We didn’t take pictures of them, and truthfully I can’t even remember if I owned a camera, or if anyone in my family did. Continue reading

What’s It Like To Go To A Medical Conference?

Digestive Disease Week 2014

Members of the IBD Social Circle, Janssen Biotech, Tonic Life Communications, and gastroenterologists meeting at Digestive Disease Week 2014. I’m in the first row, fourth from the right. Everyone in this photo is an amazing IBD advocate, and I am privileged to have met them and worked with them.

Patients don’t typically get invited to medical conferences. However we are entering a new age of the “patient expert” — highly motivated patients who not only learn more about their disease for themselves, but share their knowledge with others.

In 2014, I was privileged to be invited to attend Digestive Disease Week in Chicago, and Advances in IBD in Orlando, courtesy of Janssen Biotech.

Attending a medical conference, for me, was both thrilling and terrifying, in equal measures. Continue reading

To The Woman Employing The Courtesy Flush In The Next Stall

Women's Bathroom

I do enjoy a good bathroom. This fun women’s room entry is found at the M&M store in New York. (I also enjoy a good M&M. Or any M&M, really.)

I was using the so-called “courtesy flush” long before I knew it had a name. Flushing something particularly odorous quickly or flushing to mask the sound of flatulence are common reasons for the courtesy flush. You might use this tactic at a friend’s house or even at home, but most often it’s used in public bathrooms, especially those that are not well-trafficked.

Anyone who has inflammatory bowel disease (IBD) has used the courtesy flush. Maybe there are some who couldn’t care less what the person in the next stall hears or smells, but others feel some embarrassment.

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