Category Archives: ulcerative colitis

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 7, 2020 Update

There are now 326 reported cases of COVID-19 in people with IBD. There have been 13 deaths: 9 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 (SARS-CoV2) 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-CoV2) 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-CoV2.†
  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.


Continue reading
Talking to Your Doctor About Sleep

Talking to Your Doctor About Sleep

Most people may not immediately make a connection between inflammatory bowel disease (IBD) and sleep, but the two are intertwined. IBD affects the entire body and that includes the ability to achieve restful sleep. Living with Crohn’s disease or ulcerative colitis can significantly affect the quality and quantity of a person’s sleep, even when the disease is well-controlled. 

Quality, restorative sleep is important to long-term health. However, most people don’t get enough. In fact, the Centers for Disease Control and Prevention (CDC) consider the low quality and lack of restorative sleep among adults in the United States to be a public health epidemic. This makes sense when you think about it, because fatigue affects every aspect of a person’s life. A lack of sleep is associated with many common chronic conditions, including diabetes, high blood pressure, and depression.

Continue reading
About IBD Episode 62 - Managing IBD Alongside a Career

About IBD Podcast Episode 62 – Managing IBD Alongside a Career

How does having Crohn’s disease or ulcerative colitis have an impact on your career? The symptoms of IBD, as well as the cost, can affect the ability to work in the same way as healthy people. Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about coping with college, first jobs, and career derailment as a result of their disease.

Continue reading
About IBD Episode 55 - You Have to Take Care of Yourself

About IBD Podcast Episode 55 – You Have to Take Care of Yourself

Being diagnosed with inflammatory bowel disease (IBD) at any time or at any age is challenging. However, the pre-biologic era was especially difficult because of the lack of treatment options and the absence of some of the legal protections that are in place today. Danielle O’Connor tells her story of being diagnosed with ulcerative colitis at a young age and how she managed her career as a special education teacher through many hospitalizations and surgeries.

Continue reading

20 Years Later: The Matrix and My J-Pouch

I was fortunate to see The Matrix on its first run in theaters when it came out on March 31, 1999. We knew little about the movie at the time, just that it was science fiction and it looked amazing and that we would want to see it on the big screen and not later on VHS (DVD was not yet mainstream). The movie came out only a few weeks after my first of two surgeries to create my j-pouch (or IPAA, ileal pouch-anal anastomosis) to treat ulcerative colitis (which is one form of inflammatory bowel disease, or IBD).

I love The Matrix, and how could I not? It contains so many narrative aspects I enjoy, including science fiction, robots taking over the world, an unconventionally beautiful and lethal female character, and a kick-ass soundtrack. To be honest, there are a lot of things about the plot that don’t hold up to serious scrutiny. But that’s fine, it is still amazing and undeniably groundbreaking in both storytelling and technical aspects.

When The Matrix opens, the watcher has no idea what is going on. This is my favorite way to be pulled into a story: absolutely cold, with no frame of reference. There’s no exposition and the narrative plunks you right into this universe that works differently than the one you know. You have to make a decision right then and there, if you are all in and if you’re ready for the filmmakers to take you on the ride and teach you about their world. For me, it was my first time being out of the house and enjoying myself after having surgery, and I was so ready.

(Mild spoilers for The Matrix are contained in this article, so if you haven’t seen it, or haven’t seen it lately, go watch it now. I mean, how can you exist in the world and understand what other people talk about without having seen it?)

Continue reading

Coming Clean About My IBD Mistakes

Coming Clean About My IBD Mistakes

I’ve made many mistakes along my disease journey. The first, and most dangerous, was to believe that my fate was already sealed.
This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

Crohn’s and Colitis Awareness Week is December 1-7. If you have Crohn’s disease or ulcerative colitis, get tips from gastroenterologist Dr. Corey Siegel, a Crohn’s disease and ulcerative colitis expert, by visiting the online Expert Advice Tool before your next trip to the doctor’s office.

When I was 16, I was diagnosed with a disease I’d never heard of called ulcerative colitis. Approximately 700,000 people in the United States are affected by ulcerative colitis – a chronic inflammatory bowel disease (IBD) characterized by inflammation of the large intestine (colon and rectum). It is not caused by food or a contagious disease. 

Those are the facts. Now, for the reality. Continue reading

When Your Body Image is Crap

Many people with inflammatory bowel disease (IBD) will admit to having a body image issue. The research shows that people with IBD who have a healthy self-image are in the minority. After all, how could we not have issues with our bodies? Our bodies fail us without warning, not to mention the symptoms of IBD which are often distressing and personally upsetting to oneself and to others.

It’s funny, now as an “over 40,” I think back on the days when I was younger and I have to laugh at my skewed sense of self. The facts that support my internal monologue on body image will surely upset those who were closest to me when I was a child and a teen. We didn’t have the vocabulary to discuss things like body image in the 70s and 80s and there wasn’t anyone who told me the things I tell my daughter, that her body is strong and beautiful and that we will do our best to take care of it.

Continue reading

What Can’t You Do?

Monsters are real

Recently, during an interview, I was asked to talk about what I couldn’t do because of my IBD or my j-pouch. I may have visibly bristled at the question, though I tried to mask this initial negative reaction. I did think about how to formulate an answer–probably for a good solid minute. In the end, I couldn’t come up with anything.

The interviewer made a few suggestions, but they were things that I don’t dwell on, such as dietary restrictions. Having some dietary restrictions is not something I think about often. I can absolutely still eat all kinds of healthy food as well as not so healthy, yet tasty, food like chocolate, and also have a cocktail. I no longer see food as an obstacle or a problem, because I’ve worked out my diet and I pretty much stick with what I know at this point. Therefore, this is not something I ruminate about or concern myself with too much.

Continue reading

When Miscarriage Happens To You

Girl On A Beach

When is your family “complete”? It’s hard to know what the answer is to that question and in some cases it’s decided for you instead of by you.

Below includes my experience of miscarriage. Please note this includes a frank discussion of pregnancy loss and medical treatment for such, as well as strong language.

I never thought I’d be writing about miscarriage. To tell the truth, I kind of don’t want to do it now. But I’ve come to realize that holding back is harmful to me, and imparts the feeling that my experiences didn’t serve any purpose. Not that everything that happens has a reason or a purpose, but I have the ability to take this part of my life and turn it into something positive.
Continue reading

What It Means To Be #IBDvisible

Puzzle

Is there always a piece of you that’s missing? Maybe a piece of information that you leave out when you meet new people. Do you keep your IBD secret because you might open yourself to problems at school or work?
Image © Pawe³ Windys http://www.freeimages.com/photographer/windys-39131

People sometimes tell me, “Oh, I’ve read your blog.” It’s often said almost sheepishly, as though it were something that were slightly distasteful or embarrassing. It does seem to take a little courage for people to tell me this, which also leads me to believe for every person who tells me this, there are others who are reading and yet never say anything.

For my part, I love it when people tell me they’ve read my writing. Especially when they don’t have IBD themselves or have a close friend or family member with the disease. While I do my best to reach people with IBD so that they have the information they need to make treatment decisions and live better, I also want to reach people who aren’t touched by IBD in order to recruit them as allies. After all, this is the very heart of awareness: people with IBD are already aware. We must reach those who have no reason to become educated about IBD, and offer them the tools to become aware.
Continue reading