“Downright Medieval!” – 38 years with IBD

CrohnoDewey

(We asked Crohnology members who have had the disease longer than 30 years to tell us what it was like ‘back then’, and what has changed the most. This guest post is a response by member Dewey T. )

I was diagnosed 38 years ago, back when they didn’t have the courtesy to sedate you before probing your innards. It was downright medieval!

While the disease still stinks — yes, I went there — it’s a far cry from where it was back then. Before I had my colon extracted I was in the hospital twice, and they treated me with — if I remember correctly — all of 20mg of prednisone as the strongest dose. Can you even imagine? Back then, Remicade was still a dream.

When I was diagnosed, my doctor — who happened to be Jewish — leaned across the desk and said to me: “You have a disease that is primarily found in middle-aged people and often of Jewish ancestry, yet you fit neither cohort.” Now we see a wide spectrum of diagnosis and the meat of the age group seems to be 15-34 or something in that neighborhood — versus the > 50 age group. But has the disease changed, or do we hear less of what my pediatrician said: “Oh, he just has a nervous stomach…”?

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How Do Patients Use Social Media?

CrohnoSocialMedia

Do you know that there is an Internet? And that you can find information about inflammatory bowel disease on it? I bet you do! A recent study looks deeper at how people with IBD use social media.

The study is titled “Social Media Use In Patients with Inflammatory Bowel Disease,” and was published in the February issue of Inflammatory Bowel Disease. It is a review study, discussing the many papers on the subject already published.

You probably already know that patients use social media and the Internet to find information about their health. The authors write: “the term ‘e-patient’ has been coined to describe patients who look online for healthy information.” This is a mistake, as e-Patient more correctly means: “individuals who are equipped, enabled, empowered and engaged in the health care and health care decisions.” (Not every patient on the Internet is an e-Patient!)

You might not know that most patients use the Internet: one study found 61% of adults go online for health info, and another found that 60% “said that information online affected a decision about how to treat an illness or condition”, according to the paper. More than half of patients search online for information about their provider.

You aren’t surprised, right? But here’s the thing: physicians need to know this information. They have been very slow to join the Information Age, and that has hurt their patients.

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Our Newsletter Might Save Your Life

crohnoSaveLifeDid you know Crohnology has a newsletter? Every few weeks, we send an update on what we’ve been doing, including stories you might have missed. You should sign up. It might save your life.

But probably not. In fact, the FDA gets upset unless we say that our newsletter has not been evaluated by that agency, and it is not intended to diagnose, treat, cure or prevent any disease. So let’s keep our expectations reasonable.

That said, we try to find and write about the most compelling research on Crohn’s disease, ulcerative colitis, and other forms of IBD. We also spotlight new voices in the IBD community online. Sometimes, we run stories that are fun or just funny.

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The Psychology Of Being ‘Out’ With Illness: an interview with Diane Quinn, PhD

CrohnoQuinterviewIn a recent post, we asked “Are you ‘out’ with IBD?” That is: are you open about the illness with the people around you, or do you keep it a secret?

Much of the research behind that post was done by Diane Quinn, PhD, professor of psychology at the University of Connecticut. She was kind enough to let us ask some questions about her work, the challenges of hiding an identity, and tips for ‘coming out’.

Crohnology: Can you give us a general overview of your research?

Portrait of Dianne Quinn, PhDDiane Quinn: For a lot of years, the work on stigmatized identities focused on visible identities — like race and obesity. My work came out of thinking about how people with concealed identities may have different experiences than those with visible identities. Concealable stigmatized identities can include things like substance abuse, mental health, minority sexual orientation — and also physical illness.

C: How are visible and concealable stigmatized identities alike? different?

DQ: In terms of similarities, with both visible and concealable stigmatized identities, we can see the same kinds of harm — at the personal level, there are negative stereotypes, and we see at the group level there are worse outcomes (such as employment outcomes, mental health, etc).

In terms of looking at differences, what’s interesting is that people with concealable identities are managing the information about that identity. People with a concealable stigmatized identity decide who they are going to tell, what they are going to tell; while people with a visible identity have to deal with people already knowing.

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How Does Remicade Work?

CrohnoRemicade

The development of anti-TNF drugs like infliximab (RemicadeTM) and adulimumab (HumiraTM ) has transformed the way Crohn’s disease and Ulcerative Colitis are treated — and for many people, the drugs gave them their lives back. We previously discussed how these drugs are made. Now let’s ask: how do they work?

Here’s the thing: we don’t really know. In 2013, a research review pointed out: “the cellular and molecular mechanisms of actions of the anti-TNF antibodies remain unknown.” But that’s not to say we don’t know anything about anti-TNF. We just don’t know everything.

At the most basic level, anti-TNF drugs block TNF, which is short for ‘Tumor Necrosis Factor’. TNF is a kind of cytokine, or signalling chemical, made by white blood cells. One thing TNF can do is kill certain kinds of tumor cells — hence its name.

More important for IBD patients is that it can drive inflammation and kill epithelium cells — that is, the cells lining the gut. It also signals the body to produce other cytokines that cause inflammation and tissue damage. Because of TNF’s key role in IBD, turning off the signal is an obvious way to treat the disease.

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Do I Have To Tell My School?

CrohnoSchool

School can be tough for students with inflammatory bowel disease. The symptoms can make it hard to get to class, the meds can make it hard to study, and long absences can put students behind their peers. The good news for students in American schools: there are rules protecting you from discrimination.

Earlier posts looked at whether IBD counts as a disability (it does!) and what rules protect employees –especially the Americans With Disabilities Act as amended in 2008. Most schools also have to follow Section 504 of the 1973 Rehabilitation Act, which applies to any school or school district that receives federal money. Another law, the Individuals with Disabilities in Education Act (IDEA), applies to public school districts. (Here’s a handy chart comparing the three.)

Note that these laws protect all students — not just American citizens. If you come to the U.S. to study, you are protected. They also apply to pretty much everything the school does, including academics, athletics, and extracurricular programs. Continue reading “Do I Have To Tell My School?”

How Do I Join A Clinical Trial?

CrohnoTrial

If you have IBD, what’s the most significant thing you can do to help others fight the disease? For most people, the answer is: ‘volunteer for a clinical trial’.

Clinical trials are where medical science meets actual patients like you and me. You probably know that clinical trials are used to test drugs that might help treat inflammatory bowel disease, but clinical trials are also important in helping understand other aspects of the disease — emotional, physical, psychological, and so on. Some trials only require you to fill out a survey.

The best place to find out about clinical trials (at least in the U.S.) is ClinicalTrials.gov — a registry of active and closed clinical trials. As of this writing, there are more than four hundred clinical trials currently recruiting patients with IBD all over the world. That’s a ton of things we don’t know about the disease, that you could help scientists figure out.

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We Cured Colitis!! (in mice)

CrohnoMouse2

If you follow research on IBD, sooner or later you see news about a ‘cure’ or ‘breakthrough’ treatment that gives you hope — then learn it was only tested in mice. For example: “This fish and chip STAPLE could CURE a painful bowel condition.” (hint: it’s vinegar.)

There are plenty of these stories: fecal transplants ‘cured’ colitis; a leukemia drug ‘reversed’ colitis symptoms; a ‘breakthrough’ gel binds to bowel ulcers. The one thing they all have in common: they were only tested in mice.

So you might wonder: why is STAPLE capitalized, too? But also, what doesn’t cure colitis in mice? And most importantly: is colitis in mice really all that similar to Crohn’s disease & ulcerative colitis?

The answer to the last question is… maybe. Researchers have several ways to give mice colitis, and some are more similar to human IBD than others. Mice have helped us learn a great deal about human IBD, but many therapies that showed promise in mice have been disappointing in humans.

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Celebrities… Just Like Us (They Have IBD)

CrohnoCelebsAs more and more people are open about their struggle with IBD, even famous people are joining in. It’s great to see actors, singers, and other famous people being frank about the disease and helping break the stigma. In the last couple of months, we saw these stories:

  • Irish magician Dynamo discussed his diagnosis in an interview titled “Magic Won’t Cure Me.” For those us with the disease, he advises:

    If you’ve got Crohn’s then you just have to get on with it, deal with the negative things that come with it, and not let it change the happiness in your life. You can’t help it; it’s what it is.

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Are You ‘Out’ With IBD?

CrohnoOutInflammatory bowel disease can be embarrassing. Our instinct to hide the disease can be very strong, and might even protect us from discrimination and prejudice. Yet being ‘out’ about IBD can be positive, and even healthier. So — are you out?

Let me say: I didn’t invent the ‘coming out’ analogy for IBD. It’s often used in the medical literature to talk about people with illness, especially people who hide mental illness. There is evidence that hiding an illness is much like hiding sexual orientation or a substance abuse problem. (The term of art in the literature is ‘concealable stigmatized identity‘.)

There are good reasons a person might choose not to be ‘out’ about IBD. Many societies have strong taboos against anything to do with poop. People often react to talk of illnesses like ours with ignorance or disbelief, and it can be hard to find a sympathetic ear. To the extent diseases like IBD are ‘stigmatized’, hiding a diagnosis can be a way to avoid that stigma.

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