My Self-Experiment with Pig Whipworm (Published in AJG, on Dr. Oz)

Sean Ahrens, about to ingest parasitic worms

Back in 2010, I performed an experiment on my self by ingesting pig whipworms (Trichuris Suis Ova: TSO*) for my Crohn’s. And now, this month, I published the results of my study in a major medical journal, the American Journal of Gastroenterology!

This story has now been all over the web. I initially made a Facebook post about it, then e-Patient Dave wrote about it, and then BuzzFeed picked up the story. In the first few days, BuzzFeed’s article got over 250,000 views. And now, my video taking the worms was shown on the Dr. Oz show.

In 2010 (before I started Crohnology), my Crohn’s was flaring badly, and I didn’t have many good treatment options left. I decided to self-administered an unapproved therapy that had little research behind it: taking a parasitic worm evolved to live in pig intestines. It sounds pretty crazy, especially since I administered the treatment to myself at home. I recorded my symptoms throughout the duration of the experiment in the hopes of being able to put them online for other patients to see.

I ended up publishing my self-experiment in the American Journal of Gastroenterology’s July 2016 issue, which is somewhat unprecedented: for a patient him/herself to publish directly to a medical journal his/her own self-experiment. Now, to be clear, this was published in a specific section of the journal that has just recently been made available for patient submissions, and this section isn’t peer-reviewed. But having a patient self-experiment in a major medical journal is still pretty ground-breaking.

Due to copyright issues, I’m not able to share my full article online until January 2017 (which I will do here, then!) But meanwhile, BuzzFeed’s article covers this story better than I’m writing here myself, so please give it a read!

*Logged-in Crohnology members can see the treatment page for Pig Whipworm (TSO) here.

 

 

 

Crohn’s: Running for a Reason

The following is a guest post, contributed by Melissa Davidson.
Running through the 5 boroughs of NYC, elbow to elbow with 50,000 other crazies, is definitely my idea of a good time.  
  
So, when I asked myself what would be the best way to honor my mom, who passed away from complications due to Crohn’s disease, it was a no-brainer. I told myself I would raise money for the Crohn’s & Colitis Foundation and participate in the TCS New York City Marathon. I did both. 
  
Prior to this race in November 2015, I pushed the pain of her death away by drowning my sorrows in booze and pills. I was always an active runner, but sort of a runner on auto-pilot, plodding through the miles without intention. Raising money and training for a non-selfish reason gave me a purpose.  
  
I no longer had any excuses to fall back on. I was healthy. My mom was never healthy. Crohn’s disease is a chronic inflammatory bowel disease that affects the lining of the digestive tract. There’s no cure, but it can be managed primarily with medications. Because my mom could not properly digest food, she was also on total parenteral nutrition (TPN), a liquid nutrition solution administered through a vein into her heart. 
  
Her chronic bowel obstructions and intestinal adhesions turned her insides into cement over the course of 30 years. I couldn’t truly understand the physical pain she endured every single day, but I could feel it. It was no way for a person to live.  
  
Dozens of abdominal surgeries later, her main surgeon refused to open her up again. She died before healthcare reform and before health informatics could have helped with her overall care. She decided to take matters into her own hands and stopped taking her TPN. She eventually starved and her organs quit working. She was 56. 
  
I knew faulty intestines and life-threatening obstructions would eventually kill her. It doesn’t make death any easier. I still had to understand my own grief and loss. Also, eventually, I came back to myself – and back to doing what I love: running.  
  
Along the way, I was able to raise $3,689, all of which went to CCFA (I paid my own entry fee into the marathon). My friends, family, colleagues and acquaintances made it entirely possible with their donations. I couldn’t have done any of it without them.  
  
I don’t know what it’s like personally to suffer from Crohn’s, or something similar such as colitis,  
but I do know how tough it was having a young mom who was in and out of the hospital often. Crohn’s can be very debilitating for many people. 
  
The more understanding and compassionate we can be for others, the better. Be there to support them. Help them organize doctor’s appointments. Encourage them  to talk to a counselor. Understand that seemingly mundane things to us are actually a big deal for your loved one with Crohn’s. My mom loved going out to eat at restaurants, even if meant an immediate, uncomfortable  trip to the restroom.  
 
She wouldn’t have wanted me to waste my time and energy on people and things that were no longer serving me. She would  have wanted me to take care of myself – both physically and mentally. Was I in the best shape of my life for this race? No. Did I a break a P.R.? Definitely not. But this event wasn’t about me. It was about my mom. Her name is Pam. 

“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…”?

Continue reading ““Downright Medieval!” – 38 years with IBD”

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.

Continue reading “How Do Patients Use Social Media?”

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.

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

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.

Continue reading “We Cured Colitis!! (in mice)”