Why Join Crohnology?

CrohnoWhyJoin

Crohnology is a community for people with inflammatory bowel disease, focused on providing the best available info for dealing with the disease. For those of you with UC or Crohn’s, I want to tell you why I joined — and why it makes sense for you, too.

I was diagnosed with Crohn’s more than 20 years ago, and have been ‘online’ with the disease for more than a dozen years. I’ve spent a ton of time asking and answering questions from other patients, but I always feel like the info I get and give is incomplete. I mean, so what if Humira didn’t work for me? It will probably work for most people, right?

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When I joined Crohnology, I put all the information I could about my disease into their profile tool. That meant remembering decades of drugs and surgeries, but I got as much as I could on there. I update it occasionally, to indicate new treatments or flares, so my profile on Crohnology helps me track my health with respect to the disease.

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What Can PCORI Do For You?

The real question: what can you do for PCORI?

One of the best ways to help other patients with IBD is to get involved in research. Until recently, you could only really do that as a ‘subject’ — a guinea pig for clinical trials.

The Patient-Centered Outcomes Research Institute — that’s PCORI, for short — is trying to change that. PCORI gets patients involved in research as leaders, to make sure the results are more helpful to patients in the end.

Last week, I attended PCORI’s first annual meeting. They awarded scholarships to patients who registered — even though I barely knew what the meeting was about. I soon learned: PCORI is a not-for-profit corporation established by the Affordable Care Act. The meeting was to share and celebrate their work over the last few years.

The Institute’s mission is to promote patient-centered medical research — this as opposed to what I’ll call disease-centered research, which is how it used to get done. In disease-centered research, scientists identify a problem, propose a solution, and decide what counts as success. PCORI-funded research, on the other hand, encourages patients to be involved at all stages — including planning — of research into medicines, treatments, and other interventions.

So, for example, one study PCORI is funding looks at how to help young diabetes patients take better care of their insulin levels: the study team includes a panel of young patients to help researchers identify problems and possible solutions.

Another study looks at how much radiation is used in CT scans, to help make sure that patients are not getting more ionizing (= cancer-causing) radiation than they need for diagnostic studies. Patients and their care-givers help advise the researchers and review their progress.

PCORI also funds a study looking at how to create genetic reports for patients with rare diseases, so that physicians and patients have similar information, written in appropriate language.

At the meeting, I learned about each of these studies and more. I learned how PCORI is turning medical research inside-out, by helping patients be more involved and more pro-active in studying the problems they face.

I also learned that there are a lot of ways we can get involved. For example, PCORI is already funding a number of studies on inflammatory bowel disease — including studies on whether patients prefer prednisone to biologic meds, and the use of combination therapy for kids with Crohn’s. These studies need patients’ help.

Patients with IBD can also join the Patient-Powered Research Network (PPRN). This is a partnership with the Crohn’s & Colitis Foundation of America, to promote better research on IBD. (Note: I recently applied to join the Patient Governance Committee, which is how I found out about the PCORI Meeting.)

You can also become a PCORI Ambassador, to represent PCORI and get involved with research in a broader context. I crashed a reception for PCORI Ambassadors, and there weren’t a lot of people representing inflammatory bowel disease. You might end up doing some work that is not directly related to IBD, but it’s still a great way to get involved. Plus, you might get to go to next year’s PCORI meeting for free.

 

How Biologic Drugs Are Made

CrohnoBiologics

In recent years, a number of biologic drugs have become available to treat Crohn’s and Ulcerative Colitis: Remicade, Humira, Cimzia, etc. — with many more in development. What makes these drugs ‘biologic’ is the way in which they are produced. Warning: it’s a bit weird, and may be disturbing to some readers.

‘Biologics’ are different from most drugs, in that most drugs are made through basic chemistry. Making a drug like prednisone, for example, only requires the right chemicals, and the equipment to mix them properly. That’s because prednisone and similar drugs are relatively simple molecules.

Biologic drugs are based on very complicated molecules — usually antibodies. Antibodies are used by the immune system to attack invaders like viruses and bacteria. Biologic drugs create counterfeit antibodies to trick the immune system. When a drug’s generic name ends in ‘mab’, that stands for ‘monoclonal antibody’: so Remicade is infliximab; Humira is adulimumab; Entyvio is vedolizumab; and so on.

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Gut Feelings: Social and Emotional Struggles with Crohn’s & Colitis

(This is an excerpt from Linda Kriger’s new book, Gut Feelings: Social and Emotional Struggles With Crohn’s & Colitis.)

5118dV+4d3L._SX328_BO1,204,203,200_While waiting in line for a glass of wine at a large fundraising event, I fell into conversation with a woman who asked what I did for a living.

When I told her I was a writer, she asked what I was writing. I said I was researching a book about the social and emotional impact of inflammatory bowel disease (IBD) on people under 30.

She asked why I had chosen that topic. Years earlier, I would have deflected the question with a nondescript reason to avoid answering truthfully, but I had come to grips with the fact that secrets are toxic, so, internally, I took a deep breath and replied that I had had ulcerative colitis and my entire colon had been removed and replaced with a J-pouch to substitute for my large intestine.

The next thing I knew, she disappeared. I stood there, contemplating the awkwardness of the moment. Our brief conversation highlighted one of the central issues I address in Gut Feelings: Speak about my condition and I may alienate my listener. Don’t speak about it and I stifle who I am and what I have gone through.

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I Feel Guilty For Being Happy

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(This is a guest post from Kathleen, who blogs at Crohnological Order. You can follow Kath on Twitter or like her page on Facebook. She lives in Scotland.) 

In living with chronic illness, I often fall into a strange habit whereby I feel guilty for being happy.

If I show visible improvement in my health, however minor, I then have to start from scratch again when things turn the other way: produce the ‘I’m still sick’ card — which is entirely depressing, and feels like attention seeking.

This behaviour often stems from the ‘invisibility’ of our illness. Seeing is believing, after all — and some people just can’t seem to get their heads around an invisible illness. They can comprehend that God [Jon Hamm] exists, but they can’t quite seem to grasp that we have a disease that mainly exists under the cover of our skin.

OK: so these people know we can’t possibly walk around in hospital gowns 24/7 for their benefit, because that would be wholly inappropriate in high-powered business meetings; but they’d still prefer if we could make life a little easier for them. Perhaps a sandwich-board with “YES, I’M STILL SICK!” emblazoned on it? Or a tattoo across our foreheads with detailed artwork conveying our burning innards?

2012-10-11 20.28.32So as our illness is invisible, we are yet again expected to behave as patients — to conform to outsider’s preconceptions of what a ‘patient’ or a ‘person with a disability’ is, anyway. If I had a broken leg and was wearing a massive cast I’d be permitted to laugh and joke like a normal human being as you scrawled ‘FRED WOZ ERE 2015’ onto my leg in permanent marker. (Wrong leg Fred, the one with the cast, you idiot!)

But because you can’t see my disability, it can’t possibly exist — can it? And if it REALLY does, why are you laughing? You’re ILL aren’t you?

Crohn’s or no Crohn’s, people can still be mean and rude and presumptuous. It took me an almost embarrassingly long time to realise that those people are not people I want to know at all: so why should I make space for that just because we perhaps share an illness in common? It’s nonsensical. I suppose what I’m getting at is that we could all try to practice a little more tolerance.

Those without chronic illnesses could listen instead of pre-judging. Those with, could learn to use these uncomfortable encounters in which we feel judged, as opportunities to educate rather than take offence. We could take care of one another physically and mentally and pick up those who are struggling rather than getting competitive about who ‘has it worse’. Competitive suffering is one of my biggest peeves and should be eliminated from all of time and space immediately.

Now if you’ll excuse me I’ve got a fake cast I need to try and remove from my leg and a Bible based around the life and teachings of Jon Hamm I need to pen.
Photos by the author

New Drugs For Ulcerative Colitis

crohnoUCdrugs
Last week we did New Drugs For Crohn’s. This week the good news is for UC patients: there are a number of drugs on the horizon. A lot of this will be similar to the Crohn’s post, but there are important differences.

The two posts are drawn from a study, by authors Aurelien Amiot and Laurent Peyrin-Biroulet, is “Current, new, and future biological agents on the horizon for the treatment of inflammatory bowel diseases” [Therapeutic Advances in Gastroenterology 8:2 (March 2015), available free so you can read the whole thing if you want to.] It focuses on biologics (the meds produced by genetically engineered cell cultures) but also includes handy charts for Crohn’s and Ulcerative Colitis drugs in the ‘pipeline’.

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New Drugs For Crohn’s Disease

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Good news for IBD patients: there are many new drugs being developed for our diseases! A recent study reviewed those drugs, so now I have reviewed that study and found more info to help make sense of it. This posts focuses on drugs for Crohn’s Disease; in a post next week, I will address Ulcerative Colitis.

The study, by authors Aurelien Amiot and Laurent Peyrin-Biroulet, is “Current, new, and future biological agents on the horizon for the treatment of inflammatory bowel diseases” [Therapeutic Advances in Gastroenterology 8:2 (March 2015), available free so you can read the whole thing if you want to.] It focuses on biologics (the meds produced by genetically engineered cell cultures) but also includes handy charts for Crohn’s and Ulcerative Colitis drugs in the ‘pipeline’.

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“This Isn’t Suffering… Right?”

CrohnoRG

(This is a guest post: RG blogs at CrohnsAndTheRealGirl.wordpress.com; you can also follow her on Twitter @crohns_realgirl.)

A few weeks ago, I was sitting in a movie theater with my mom. The lights were dim. Around us, the low murmurs of quiet conversation. Everyone waiting for the movie to begin.

“So,” My mom turned to me. Lips pursed, a frown. “I read your blog post.”

“Oh yeah?” I chewed on the inside of my cheek, trying to remember if I’d written something horribly offensive or obscene. Something worthy of a Mom Frown.

It had been a pretty standard post: a semi-profound story about the chronic pain that accompanies my all-mighty bowel muncher of a disease. There hadn’t even been one F-bomb (a guaranteed Mom Frown Scenario).

“So,” I fingered at the lid of my water bottle. “Did you like it?”

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Know Your Rights: A Handbook For Patients With Chronic Illness

CrohnoRightsAs editor for Crohnology, my job requires a lot of time following social media about IBD. I often see questions about what laws cover people with the disease, and whether and how those laws protect us. As a public service (to those of us in the U.S.), I want to recommend a book that answers many of those questions: Know Your Rights: A Handbook for Patients With Chronic Illness.

This is not an official endorsement from Crohnology, but speaking only for myself: this book has been a huge help. I used it a lot while I was in graduate school, pre-2009, when the laws concerning people with chronic illness were pretty fuzzy. The original edition untangled that mess in a way that was easy to understand for a non-lawyer.

Fortunately, in 2009 the ADA Amendments Act took effect, which made the law for people with chronic illnesses like IBD much clearer. The Affordable Care Act also made important changes to the law. Know Your Rights , now in its 5th edition, has since been updated to reflect these changes.

2012-cover-final-231x300Many people with IBD don’t realize that the law protects them from discrimination, and schools and employers often try to pretend otherwise. Know Your Rights will help you understand those laws and how they affect your life: do I count as disabled? What should my school do to help me? When should I tell an employer about my disease? What if it comes up in a job interview? What counts as ‘reasonable accommodation’? How much sick leave can I take?

I keep seeing these questions online, but grew tired of adding my two cents. Since almost everything I know is from my copy of Know Your Rights, now I just recommend the book. Apart from state laws – which can can vary somewhat, but do not trump Federal law – the book is the best resource for answering these questions. Now I just post a link to the book.

The original edition of Know Your Rights was written by Jennifer Jaff, a lawyer with Crohn’s Disease who founded a non-profit called Advocacy for Patients with Chronic Illness. Jaff was a defender of people with chronic illness; she helped thousands of patients with legal advice and advocacy, and also worked in Washington to help pass laws on their behalf. When she died in 2012 – from complications of Crohn’s – her organization was renamed the Jennifer Jaff Center.

You can buy a copy of Know Your Rights from their website.

 

Photo “Statue of Justice – The Old Bailey” from Flickr user Ronnie MacDonald by CC license.

IBD Research Roundup – September

CrohnoResearchRoundup

Here at the Crohnology blog, we spend a lot of time reading research articles about inflammatory bowel disease. Some of those articles are important enough to deserve whole posts, some get lumped into topical posts, and some we catch wandering off on their own. This last bunch ends up in the Research Roundup:

  • In an article that should be titled, “Western Medicine 1, Chinese Medicine 0”, Chinese researchers compared azathioprine to a traditional herbal remedy, Trypterygium – “thunder god vine” – in preventing recurrence of Crohn’s disease. Azathioprine won, but it’s still awesome the researchers went to the effort of putting Trypterygium through a randomized trial. Eventually, more and more of these sorts of remedies will be put to the test, so we can learn more about those that work – and why: Zhu, et al.  “Tripterygium wilfordii Hook. f. versus azathioprine for prevention of postoperative recurrence in patients with Crohn’s disease: A randomized clinical trial.” Digestive and Liver Disease 47:1 January 2015 (free article)
  • If you are interested in the research on fecal microbiome transplant (FMT or ‘poop transplant’), an easy-to-digest article in the World Journal of Gastrointestinal Pathophysiology is a good starting point: Malnick, S. & E. Melzer, “Human microbiome: From the bathroom to the bedside”. World J. Gastrointest. Pathophysiology 6:3, August 15, 2015. (free article)
  • A British study looked at ‘mindfulness’ training as a way for dealing with the stress and depression that often accompany IBD, as a pilot project for a larger randomized controlled trial. The results were promising for depression and some anxiety, but the training made no difference in disease activity or disease-related quality of life. Shoultz, M, et al. “Mindfulness-based cognitive therapy for inflammatory bowel disease patients: findings from an exploratory pilot randomised controlled trial”. Trials 16, 2015. (free article)
  • While nobody believes ‘an apple a day keeps the doctor away’ (in fact, an apple once sent me to the ER!), a study of ‘apple polysaccharide’ extract shows it may help protect against cancer associated with colitis. It would be interesting to know whether some apples have more than others, and whether it’s present in other fruits like pears or crabapples, but the article is paywalled: Zhang, et al. “Apple polysaccharide reduces NF-kb mediated colitis-associated colon carcinogenesis.” Nutrition and Cancer 67:1, 2015. (abstract online)

Photo “Cattle Drive” by Flickr user Anne Worner under CC license