There Is No Cure Without U

CrohnoNoCure

Everyone with IBD looks forward to the day a cure is found. But what are you doing to make that happen?

Maybe you’ve done a fundraiser. Maybe you’ve donated money. Maybe you’ve participated in a clinical trial. That’s all important, but there’s an easier way to help fight IBD — and it requires not a single penny, drop of blood, nor sip of prep.

What you can do is join Crohnology — the social network for people with Crohn’s disease, Ulcerative Colitis, and other forms of IBD. Crohnology  has more than 8,000 members from 91 countries, who share their experience with the disease to help each other feel better.

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“I Am Not Ashamed To Get My Body Out…”

CrohnoLaura2

(This is a guest post by Laura. She lives in Australia and blogs at Stomalicious; you can follow her blog on Facebook.)

Before my Crohn’s diagnosis at age 30, I was a relatively confident, independent, worldly woman.

Having IBD impacted all of that. As my symptoms worsened, insecurities increased. I became introverted, anxious, and less confident in many ways. Going to work, socialising, even grocery shopping became a struggle.

I became heavily reliant on my family for help and support. There is nothing wrong with this, but after being so independent, it was difficult for me to accept.

Financially, physically, personally, socially … my world changed. My self-esteem plummeted in more ways than one.

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How Does Prednisone Work?

CrohnoPredOne of the medicines most often prescribed for IBD is prednisone. Most people know it helps reduce inflammation, but there’s lots more to it than that. So how does it work?

Prednisone is in a class of drugs called steroids. ‘Steroid’ is short for ‘steroid hormone’ — ‘steroid’ describes a specific shape of chemical, but ‘hormone’ says more about what the chemical does. A hormone is simply a signal from one part of the body to another, to help regulate various bodily functions.

Steroid hormones come in two kinds, corticosteroids and sex steroids. Sex steroids are produced by reproductive organs, and include testosterone and estrogen. When most people talk about steroids, they mean the synthetic sex hormones that some body-builders use. Prednisone isn’t that kind of steroid, alas.

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How Do You Cope?

CrohnoGlass

Learning to cope with inflammatory bowel disease is crucial to living with the disease — but are some coping strategies better than others? Is there a ‘best’ way to cope with IBD?

It turns out there have been several studies of coping. Not surprisingly, some ways of coping are better than others. The most recent study along these lines was published last year in the Southern Journal of Medicine.*

The authors took 150 patients with IBD and gave them a survey that looked at their coping behaviors. The survey asks patients to note how often they do things like, “prayed or put your trust in God”, “waited to see what would happen”, or “tried to keep a sense of humor”.

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External Risk Factors For Crohn’s Disease

CrohnoCig

People get inflammatory bowel disease from a combination of genes and environmental triggers. Having the right (i.e. wrong) genes makes a person more likely to develop IBD in the presence of the right (wrong) external factors. In a previous post, we looked at both causes of IBD; this post takes a closer look at the external factors that cause Crohn’s Disease.

In 2013, the journal Gastroenterology and Hepatology published a two-part review* of the known “environmental” factors that can be associated with Crohn’s Disease. Why only CD? The authors don’t say, but some of the studies mention Ulcerative Colitis as well.

‘Environmental’ in this sense means things that are outside the body — even if they can be eaten or absorbed. The study points out that there are three basic ways external factors can contribute to Crohn’s: 1) by making the gut leakier; 2) by changing the immune system in the gut; 3) by changing the gut microbiome.

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Do I Have To Tell My Boss?

CrohnoLumbergFor many people with the disease, IBD counts as a disability — at least under the U.S. Americans with Disabilities Act. That means there rules to protect people with IBD from discrimination. One of the places where those rules are most important is work.

People changing jobs or entering the workplace often ask: “do I have to tell my boss?” The answer is ‘no’ — but it’s a little bit complicated. There are two parts to the question: first is when you are applying, second is when you have the job. And, again, this is for U.S. Law

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The Man Who Couldn’t Eat – a review

book_coverWhat if you couldn’t eat for… who knows how long? That’s exactly what happened to Jon Reiner, an author with Crohn’s disease. He tells the story in his memoir, The Man Who Couldn’t Eat.

The book starts with Reiner’s disease in a bad flare — as in, near-death bad. He winds up in the hospital with intestines full of holes, so fragile that one of the holes can’t be closed properly. Reiner’s doctors decide that in order for his guts to heal, he can’t eat or drink anything — not even distilled water — for as long as it takes.

That said, the book is not full of graphic detail about symptoms. Instead, it’s about how the disease changes his relationship to food. What happens after Reiner is told not to eat is hard to explain: first, you have to understand that eating isn’t just a thing you do.  It’s a big part of who you are.

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Research Roundup – January 2016

CrohnoResearchRoundup

From time to time, the research wranglers at the Crohnology Blog find ourselves lassoing a few stray stories of IBD-related news. Thus we present another Research Roundup, where we bring those stories back to the corral for your perusal…

  • Avoiding fiber might make flares more likely in Crohn’s patients. A study of 1619 patients with CD and UC shows that patients with Crohn’s “who reported that they did not avoid high fiber foods were ∼40% less likely to have a disease flare than those who avoided high fiber foods”. This is contrary to conventional wisdom that high-fiber foods can trigger flares, although the study does not show a clear causal relationship.
  • Why don’t people take their biologics? A study of people taking anti-TNF medicinines (Remicade, Humira) shows that a quarter of them were ‘non-adherent’ — that is, not taking their meds as prescribed. The main reason was that they were supposed to be taking Humira, which can be injected (or not) at home. Other reasons were shorter disease duration and ’emotional response’. Non-adherence is an important reason why biologic meds stop working over time, so taking the meds as scheduled can help keep them effective.
  • Etanercept may trigger IBD. According to FDA records, some 443 cases of IBD may have been triggered by the anti-TNF drug etanercept (brand name: Enbrel). Etanercept is not approved to treat IBD; patients were taking it for conditions like rheumatoid arthritis.
  • Stem cell transplant is no better than conventional treatment for Crohn’s. A study of patients with severe Crohn’s showed no statistical difference between stem cell transplant and more conventional treatment. One patient who underwent stem cell transplant died.

Does Cow Poop Cause IBD?

CrohnoCowPoop

Inflammatory bowel disease is caused in part by something patients are exposed to, but what exactly is still not certain. However, an IBD cluster in the town of Forest, VA provides strong evidence that a bacterium called MAP can cause IBD — and it comes from cow poop.

The Forest cluster was documented in a 2011 study published in the journal Gut Pathogens.* The cluster included 15 children — 11 with Crohn’s disease and 4 with ulcerative colitis, in a population of 8,000 people:

This represents an incidence rate of 217 cases per 100,000 children per year; more than 47 times the expected rate.

The study authors estimate as many as 45 more adults in the area might have IBD or a similar illness.

Forest is in Virginia cattle country, and the investigators quickly homed in on a culprit: Mycobacterium avium subspecies paratuberculosis (MAP). This bacteria is common in cattle, where it causes an IBD-like disease.

MAP can be transmitted from cow to cow in a number of ways, but usually through fecal contact. This can include water contaminated with cattle feces. Humans can be exposed to MAP in similar ways:

MAP is present and may be concentrated in drinking water due to the organism’s resistance to chlorination and its growth in biofilms and on metallic water pipes. We postulate that in our outbreak, individuals inhaled aerosolized MAP from contaminated water in the river or creek tributaries near their homes.

…Nine of our eleven children with Crohn’s disease were young males at the time of their diagnosis, in distinction to previous literature suggesting boys are perhaps twice more likely than girls to develop Crohn’s disease [sic]. The marked male predominance in our patients may reflect the fact that boys are more likely to play in creeks and streams than girls, but it may also be due to immunological differences between boys and girls putting boys at risk for particular infectious illnesses.

The authors and families involved contacted the Virginia Department of Health and the Centers for Disease Control and Prevention, but neither agency did any further work on the cluster. That’s unfortunate, because there is clearly more research needed.

We don’t know what causes IBD, but the Forest cluster is strong evidence that MAP can play a role.

*The study is Pierce, E.S.; Borowitz, S.M.; and Naser, S.A. “The Broad Street pump revisited: dairy farms and an ongoing outbreak of inflammatory bowel disease in Forest, VA.” Gut Pathogens 3:20 (2011).

Photo “cow’s arse” by Flickr user rhys000 used under Creative Commons license.

Test Your IBD Savvy

CrohnoSavvyA recent study reports that patients with inflammatory bowel disease have poor knowledge of their illness. Do you do any better? Our quiz is adapted from the same test used in the study.

The study was was headlined, “IBD patients have poor disease related knowledge regardless of education level“, but it was conducted in Chile and so might not apply to patients everywhere. The study used a test called the Crohn’s & Colitis Knowledge questionnaire (CCKNOW). While a score of 9 out of 20 was typical in this study, other countries report median scores from 4 to 13. More knowledge of the disease has benefits for self-care, but is also associated with higher anxiety.

The quiz below is adapted from the CCKNOW; the full questionnaire has 30 questions, but this quiz only has ten. I am grateful to Dr. Jayne Eaden, the lead author of the CCKNOW, for providing the correct answers.

Click ‘more’ to take the quiz…

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