You can read Steve's blog post about the interview here.
I am extremely floored to be the profiled e-patient in this six-minute video on peer-to-peer healthcare. Larry Chu, MD, the organizer of Stanford Medicine X hired a very talented videographer (Theo Rigby) to shadow me for a day and interview me. I talked about what it has been like to live with Crohn's Disease, and how I was inspired to build Crohnology to connect patients with it so we can find new medical discoveries.
The video from my demo of Crohnology onstage at Stanford Medicine 2.0 has just been released. On stage (and in this video) I walk through briefly what motivated me to build Crohnology, what Crohnology is, and what impact I've seen in the lives of people who I've invited to join it.
We're starting to open the private alpha gates just a tad, and adding some new users to Crohnology.
One year ago, I placed a stake in the ground. I decided I could no longer passively accept the current state of the healthcare system without doing something about it. I decided to quit my job and dedicate myself to producing a software network that gives unprecedented power and health information directly to patients, via a system of patient-to-patient sharing modeled after Wikipedia.
Many doctors, providers, and those in the healthcare industry told me that what I was doing was dangerous. That it wouldn't work out. That patients don't know what they are talking about. That medicine should be left in the hands of the "experts". And that, at best, patient anecdotes about their experiences with treatments were "cute".
From having an incurable immune condition called Crohn's for 13 years, I saw things differently. I told them that I believe our current medical system has it upside-down. I believe patients are the most valuable part of their care. I believe they walk around with great silos of knowledge and information that is of uncountable value to the medical system and to other patients. And, from my experience, I know these silos go completely untapped.
It is necessary for us to be connected to find a cure.
Patients with chronic conditions literally go through 99.999% of their lives outside of the doctor's office, but that data from them living with and treating their condition is effectively swept aside—it's "anecdotal" after all. Patients experiment with alternative treatments like diets, supplements, or activities, and learn whether they work or not. But the system doesn't support upstreaming of that data. That data just gets lost. Leaving newly diagnosed patients to start at square one, relearning things many patients have learned before. I think that system doesn't make any sense.
One thing I learned is that if I had listened to the traditional thinkers who repeatedly told me "no"—to those people who told me that patient-to-patient healthcare is "crazy", "dangerous", or blasphemous—I would never have gotten this far. I would not have a wall full of printed emails from patients all over the globe telling me that Crohnology has already made a huge difference in their lives.
Oftentimes I'm finding that hearing "no" means you're doing something right.
Another thing I learned is that if you're willing to bet everything on something radical you truly believe in, people will come help you out. For me, one of those people is Dr. Larry Chu, at Stanford. When I shared with him my vision and the software I had developed, he told me that he wanted to spread this message to the world. He produced the video embedded at the top of this blog post, which paints my story more vividly than I could ever have hoped to do on my own. (If you find it helpful, I'd love you to share it with your friends to help spread the message to patients across the globe.)
The other amazing thing about Dr. Chu is that he is the producer of the Stanford Medicine X Conference. He believes in the patient revolution—that is, that patients should no longer be disempowered and instead should be empowered to rise up and take control of their health. Patients should have access to their data, and they should be able to share that data with others. And most of all, their experiences and voice should play an integral part in their care and the search for answers.
This year, Dr. Chu is doing something completely unprecedented. As the producer of the upcoming Stanford Medicine X Conference, he is giving away 10% of the seats to patients themselves, in the form of scholarships (regular registration is $1,199). The deadline for submitting these scholarship applications is in just two days, Thursday. If you consider yourself an empowered patient, please apply (if you're accepted, I look forward to seeing you there!)
It seems now that more and more I'm meeting people that believe. Doctors, designers, and researchers like Bryan Vartabedian, Susannah Fox, Peter Margolis, Michael Seid, Jesse Dylan, Bertalan Meskó, and Dominique Pahud just to name a few. I've found that you've gotta fly through that low fog of dismissal and doubt before you can really hit the high climb of positivity where you find people who get it.
One last thing I learned is that doing something to legitimately help people is contagious—especially when those people are really in need of help. Will Cole, whom I became good friends with when studying computer science at UC Berkeley, was so floored about Crohnology and its potential to help people that he quit his job at Microsoft to come and join me. We got backed by Rock Health and are now working out of the drop-dead gorgeous Berkeley Skydeck overlooking the San Francisco Bay.
The wave of the patient revolution is building. You, as a patient living right now in this time and space, have an amazing opportunity to be out on the front of that wave—to literally help shape the future of how we practice medicine.
Can you imagine a world where every patient is instantly connected every other? Where the treatments that work (whether eastern, western, or in between) surface from the collective intelligence of patients distributed throughout the globe? The causes, cures, and treatments we can discover from the symphony of patient experiences going on in real-time throughout the world, to me, is a mind blowing proposition.
I'd be floored if you could forward this blog post (or the the video above) on to anyone you know who has chronic condition or considers him or herself an empowered patient. Many thanks.
In other news: We've begun opening up the Crohnology alpha. Accepted patients should be getting invites on a rolling basis.
Today, December 1, 2011 is the start of the newly-officiated National Crohn's & Colitis (IBD) Awareness Week!
The proposal for this awareness week was introduced to congress by Senate Resolution 199 by Senator Harry Reid and passed by unanimous consent on Nov 14, 2011.
Here is the full text of the now in-effect resolution (as shown on GovTrack.us):
Supporting the goals and ideals of ‘Crohn’s and Colitis Awareness Week’.
Whereas Crohn’s disease and ulcerative colitis are serious, chronic inflammatory diseases of the gastrointestinal tract;
Whereas Crohn’s disease and ulcerative colitis, collectively known as inflammatory bowel disease, afflict approximately 1,400,000 people in the United States, 30 percent of whom are diagnosed as children;
Whereas the cause of Crohn’s disease and ulcerative colitis are unknown and no medical cure exists;
Whereas Crohn’s disease and ulcerative colitis can affect anyone, at any age, and is being diagnosed with increased frequency in children;
Whereas Crohn’s disease and ulcerative colitis patients are at high risk for developing colorectal cancer;
Whereas a lack of awareness among health professionals and the general public may contribute to the misdiagnosis and mismanagement of Crohn’s disease and ulcerative colitis;
Whereas the annual direct cost of Crohn’s disease and ulcerative colitis in the United States is estimated to be $6,100,000,000;
Whereas the goals of ‘Crohn’s and Colitis Awareness Week’ are--
(1) to invite and encourage all people in the United States to join the effort to find a cure for Crohn’s disease and ulcerative colitis;
(2) to engage in activities aimed at raising awareness of Crohn’s disease and ulcerative colitis among the general public and health care providers; and
(3) to promote and support biomedical research needed to find better treatments and a cure for Crohn’s disease and ulcerative colitis; and
Whereas the week of December 1, 2011, through December 7, 2011, has been designated ‘Crohn’s and Colitis Awareness Week’: Now, therefore, be it
Resolved, That the Senate--
(1) supports the goals and ideals of ‘Crohn’s and Colitis Awareness Week’;
(2) encourages media organizations to participate in ‘Crohn’s and Colitis Awareness Week’ by helping to educate the general public about Crohn’s disease and ulcerative colitis;
(3) recognizes all people in the United States living with Crohn’s disease and ulcerative colitis and expresses appreciation to the family members and caregivers who support them; and
(4) commends the dedication of health care professionals and biomedical researchers who care for Crohn’s disease and ulcerative colitis patients and work to advance basic, genetic, and clinical research aimed at developing new treatments and a cure for Crohn’s disease and ulcerative colitis.
So have a great week, and if you or someone you love has Crohn's or Colitis, let them know how much you care! Open up the communication lines about these conditions. The more aware the public is, the more funding gets behind research into the cause and cure.
To me, this week is about connecting. It's about connecting with other patients to bond over our shared experiences, to learn, and most of all be in the comfort of one another as we rally together forward to find a cure.
Now you tell the world: What does IBD Awareness Week mean to you?
Over Thanksgiving weekend, I had the pleasure to do a video interview about Crohn's, Colitis, and Crohnology with Vic Phillips of BehaveYourHealth. BehaveYourHealth is a new website started by Vic Phillips where he posts interviews with founders building startups in the health space. As you may know, I was diagnosed with Crohn's at age 12 and that has been my inspiration for building Crohnology for patients around the globe.
In the video above, I talked in depth with Vic about Crohn's & Colitis (collectively Inflammatory Bowel Disease) and how the nearly 1.5 million people who live with these conditions manage their health.
In the interview, I describe to Vic my self-experiment with Pig Whipworm and show him the year of symptom data that I tracked through Crohnology.com to evaluate the effect of inoculating myself with these parasites as treatment for my Crohn's.
We talked a lot about how the standard 5-10 minute doctor visit doesn't allow adequate time for your doctor to fully understand your condition or help you live with the complexities of the disease. People with IBD need to take charge of their own health if they are to successfully manage their health in our current medical system. You have to become an empowered-patient. There is no other option.
Thanks so much to Vic for providing me with this opportunity!
Wow. Thank you everyone who has showered Crohnology with so much love and support over the last couple of weeks.
As some of you know, two weeks ago, the blog post I wrote about Demoing Crohnology at Medicine 2.0 went viral. Within a couple hours of posting, it blew up to #2 on the front page of Hacker News. Literally overnight, it was viewed by over 15,000 people. Mentions about it and Crohnology.com ripped up Twitter. I got hundreds of direct emails from patients all over the globe wanting to join the Crohnology alpha. My email inbox was flooded with more alpha sign ups than I could ever have imagined. It was so rapid, I could hardly keep my website's email service provider up. All of this felt absolutely amazing. =)
The best part was the overwhelming flood of warm and positive emails, comments, and feedback. This indicated to me more than ever that there is clearly pent-up need by patients around the globe for a site like Crohnology. I cannot wait until I can release it to you all. Thank you so much. You've filled me up with so much motivation, and touched my heart.
The door to the Crohnology private alpha is opening, just slowly. I'm letting in people to the rate at which I can manage their feedback and learn from them. I had no idea so many people would sign up--thank you so much for your overwhelming response. The alpha is so far going amazingly well, and I'm working as fast as I can to get everyone in. With that in mind, I'm looking for developers that want to help.
I encourage you to take a look at the passionate and insightful discussion that the blog post spurred on Hacker News.
By the way, demoing onstage at Medicine 2.0 at Stanford went absolutely fantastic. It was amazing to spread the word of Crohnology to hundreds of doctors, researchers, journalists, and other patients. I am told that a video of it will be released soon. As soon as it is, I'll post it here.
I send a huge thanks to the following people for helping me out during that crazy crunch time that followed the Hacker News coverage: Sasank Mudunuri, Ryan Weald, Molly Reisman, and Marcio von Muhlen. You are amazing. Thanks so much. And another huge thanks goes out to all the people with Crohn's & Colitis, their friends and family, and other amazing people that have shown so much support for this project. You keep the fire burning in me to keep on.
As some of you may know, at the age of 12, I was diagnosed with Crohn's Disease, an incurable, inflammatory disease of the digestive tract. After having several devastating flare-ups, I went on a quest to do anything I could to treat my disease by experimenting with numerous alternative and experimental therapies and diets (including intentionally infecting myself with parasitic worms).
When I realized that the information I had built up from this quest could heal other patients, I went on another quest: to meet as many patients as I possibly could and share the information I had learned with them. But I knew there were tons of other patients around the world who had gone through their own journeys and had extremely valuable information to share themselves. And by sharing it, they could heal more patients. And so I went on a new quest: to make it possible for Crohn's & Colitis patients around the world to share and learn from one another.
Crohnology is that quest. Crohnology is a place for people with Crohn's & Colitis to share the extremely valuable information each has accumulated on their journey to better health. And in turn, heal others by informing them of treatments that work.
This is going to be a really awesome day--this Friday Sept 16. It will be the first real public debut of Crohnology, which has so far been in private alpha.
I'm excited to show you what we've been building, and how our awesome community of e-patients with Crohn's & Colitis are engaging in a powerful, new way: a way that enables them to meet patients near them, share their most successful treatments, and keep people informed about their health. It's fun, it's engaging. And most of all, it's extremely empowering.
A big thank you to everyone who has gotten me this far including the entire C3NProject Team, Michael Seid, Peter Margolis, RockHealth, Halle Tecco, Leslie Zeigler, Bassam Kadry M.D., Larry Chu M.D., Ian Eslick, Marcio von Muhlen, Rick Morrison, Nikolai Kirienko, Ryan Weald, and many more--most of all, the engaged and giving e-patients on Crohnology.
Crohn's and Colitis are isolating conditions. Because they are invisible illnesses, it's impossible for a patient to walk down the street and identify another. As a result, we patients are disconnected from each other by default. To be connected to other patients, it takes conscious effort.
Friendships in real life are created by people being put into situations that allow them ample time to get to know others socially -- for example, you meet someone at work, at school, or at a party.
Patients with Crohn's & Colitis don't have a natural setting for this sort of socialization. As a result, becoming close friends with other patients has to be a result of a created situation. It requires looking for others online or it requires setting up getting coffee with that cousin of your parent's friend's friend who you were told through the grapevine has Colitis. The truth is most patients don't do it. It's too much work, the odds that you will really connect with that person are too low, and the benefit is too amorphous.
What I'm saying is that Remicade, an intravenous medication for IBD, changes all of this. It takes disconnected and isolated patients and builds connection and empowerment among them. How could a medication for Crohn's & Colitis do this?
Remicade is the only popularly prescribed IBD drug of which I know that is administered in groups. Remicade is administered by infusion--in other words, by a slow intraveneous drip. Every eight weeks, patients who take Remicade visit their doctor's office or an infusion center to receive this treatment, which usually takes about four hours. Oftentimes while this happens, they sit in a circle with other IBD patients. These Remicade "pow wows" are sometimes the longest time that patients have ever sat in front of each other.
Sitting in front of another patient that has been spending their life going through the same private condition as you is extremely empowering. You get to swap war stories. You get to tell each other about the crazy treatments you've tried; the crazy symptoms or drug reactions you've experienced; the crazy social situations you've encountered. What you start to get is validation. You get validation that all of the crazy things that you've been going through aren't crazy at all. You learn that you are not alone.
This validation is empowering. It translates into confidence. It translates into unity and comradery with other patients. You go from feeling like a isolated victim to feeling like a cause-driven commanche fighting alongside a band of warriors*. Your spirits rise with this newfound sense of community. And you begin to realize that the most valuable resource available to you in your care is sitting in the chairs around you: your fellow patients.
Let the patient revolution begin.
Follow Crohnology on Facebook and Twitter. I'm Sean Ahrens. I've had Crohn's Disease for 13 years. I'm building Crohnology to take the power of this community, and the knowledge sharing that comes with it, and put it online.
* To very poorly paraphrase Michael Seid, M.D. of the C3NProject
When you think of someone with Crohn's Disease (or IBD in general), what do you "see" first? Do you see the person or do you see the disease? Tough question isn't it? For the longest time I considered myself as a person with a disease - not the other way around. I refused to be defined by my Crohn's Disease and would get quite defensive if someone saw the disease first. In all honesty - I was an idiot. It was a simple case of denial and I still find myself falling into that particular trap from time to time. Well, I never confessed to being the brightest button in the box :-) I have Crohn's Disease which means that the rules in my game of life are fundamentally different from everyone else.
To quote the line in the movie; "with age comes a certain perspective." In my case,...
Low residue friendly egg fried rice
I made this recipe up on Sunday when I didnt have any food in the house and it was really yummy. Usually with egg fried rice you have massed of spring onion in there but that is a big no-no for low residue dieters so to get the flavour I have fried an onion and used the oil in the dish.
1 cup rice
1/2 small onion
3 rashers finest smoked streaky bacon
2 large eggs
10 cooked large prawns
dark soy sauce
light soy sauce
Boil rice in salted water for 10 minutes then drain.
Slice onion, fry onion in 2 table spoons of oil on a low-medium heat for 6 minutes
3.Break the eggs into a cup and whisk. Add a pinch of salt and pepper
Just wanted to keep everyone in the loop. I am having good bowel movements and pain has gone down considerably since the transplant. Eating doesn't seem to be causing issues but I'm still on SCD phase 2/3. I am slowly introducing new foods each week but it could be a while before I am on a complete SCD diet.
The issues is still having urgency which is weird because not having the diarrhea that goes with it. Just can't hold on to get to a bathroom. I have been struggling with this for weeks and FINALLY decided to call GI doctor.
He thinks due to the swelling he was seeing on my last colonoscopy that I am still having that and that may be causing the issue. So gave me some enemas (Fun stuff) to try to reduce swelling. If it works then we know that's the issue and can focus on...
(OR THE "MY IMMUNE SYSTEM IS A TOOL CONJECTURE").
If you know me then you know that I'm not a doctor (I don't even play one on TV). Now, many people ask me, "Just what is Crohn's disease?" Of course I want to sound all intelligent and wow them with my knowledge so usually I give them the medical definition from the Cleveland Clinic's website. But lately I've come to realize I should just explain it the way I best understand it: My immune system is a tool.
Have you ever been a part of a team? Almost always there is that one guy who no one likes. You know, the tool who has an answer for everything. That's my immune system. One day he was checking over things and when he got to my digestive tract he was all like, "Whoa, whoa, whoa. What the hell is going on here? You guys are...
WHAT THE HELL IS THAT? SOUNDS LIKE A CHARACTER'S NAME IN A REALLY BAD VAMPIRE MOVIE.
Fistula. Such a strange sounding word. Think of the game "Chutes and Ladders." Do you remember that game? A fistula is like a chute. It forms between your bowel and different organs within your body. Or, it can come right out of your body, say through your stomach. Mine was a peri-anal fistula which means it ended in my anus. Yeah! What fun! Basically puss and other nasty stuff travels the length of the fistula and then exits. Did I mention that you have NO control over when this happens? Say it with me again: Yeah! What fun!
Having a fistula is like having to watch Twilight over and over on a loop. (Yes, I realize this is a rather childish comparison. A fistula is no laughing matter as I soon...
I bet you thought I had the transplant was cured and disappeared :) Nope still here! I am still doing well but not 100% - no cure yet. I'm still waiting on that one!
I am still having low to medium urgency (especially when I have to get in a car but some of that may be anxiety) and pain and tiredness. Dr and Dietitian both assure me it's normal and that I am looking at 3-6 months minimum before I can even expect to know if this transplant "cures" the colitis and "bad bacteria" issues.
So I am no longer seeing vast amounts of healing or signs of getting better - pretty much just still having 4's on the Bristol Chart but nothing else has changed all that much since my last posts.
The hardest part right now is the emotional side of all this and the waiting to...
BEDDING OUT is Liz Crows latest performance piece to be shown at Salisbury Art Centre. Liz Crow is going to live in the gallery space for 48 hours to show how her illness affects her private life.
In an interview with The Guardian Liz Crow says, "For about 30 years, I've been aware that I operate in two starkly different modes," she says. "One is public, where I try and come across as energetic and animated and engaged and good at what I do. It's a way of being that's approved of socially. But what people don't see is the other side, where I spend most of my time at home, a great deal of it lying down in my bed. That's in order to prepare for the public thing, and to recover from it. I've always kept that hidden because it feels dangerous to make it public. It feels like I'd be...
I am currently in hospital in London. I spend quite a lot of time in hospital generally because I have Crohns diease but not usually for so long. Things hit rock bottom for me and now here I am cruising my way through the greatest organisation in the world, the NHS. I’ve been here for about 2 and half weeks. I went into my local A&E 3 Sundays ago with a pulse of 150 (should be 60-80). I sat in the waiting room for an hour whilst teenagers with a headache and someone with an abscess saw the nurse before me. Then they took me into A&E and I fainted for the first time in my life when the nurse put a cannula in! How embarrassing!
I had an appointment with my Gastro doctor in London for the next day so I went straight from one hospital to the other. He said I should come into hospital....
Black Narcissus is a film directed by Powelll and Pressburger in 1947 although the film looks like it was shot on location but its actually all filmed in a studio and the scenery is all beautifully hand painted on glass. Its an incredibly unnerving film which it tells the story of a group of nuns who go to live in the Hiymalayas in order to convert the local population. One nun goes mad and throws herself off the bell tower. This is what I kept comparing my state of mind to when I was delirious on Monday morning running a 42 degree temperature. I kept saying I feel like I'm in the film Black Narcissus.
The last sequential events I remember is putting on a hospital gown in preparation for an operation I was supposed to be having that morning at about 7am. Then me getting so cold I...
Wow it's been three weeks so far. It's funny how three weeks seems so long to me because it's been years since I've gone that long with minimal issues!
I have to say this bacteria transplant was definitely a good thing for me. I found out from my GI doctor that he infused the bacteria with a solution of Ultimate Floramax which is what gave me a trillion bacteria organism in my gut!
This treatment has stopped the constant diarrhea and definitely has put me on a path towards healing rather than where I was which was the complete opposite of healing! However one thing I want to make clear is this - I do not believe this treatment alone was what got me here. I believe there have been multiple steps taken with the doctor and my dietitian including the transplant that put me on a...
The Crohnology blog is delighted to introduce you to Sara Ringer, a talented e-patient whose blog and website are wonderful contributions to the Crohn's and colitis community. Check them out-- but first, read the interview and get to know Sara!
Hey there! I’m Sara, a classy sassy female living life with Crohn’s disease, a motility disorder, and arthritis. It is my goal to show others how to be positive and to own their disease instead of letting it own them, while educating them about IBD along the way. My first hospitalization came when I was just 10 months old and my last hospitalization was not that long ago. After a childhood of hospitalizations with no answers, I finally got an official diagnosis of ulcerative colitis in 1996. In 2008 I underwent surgery to have my entire large intestine and rectum removed and have a temporary ileostomy created along with an internal ileo-pouch (j-pouch) constructed. A few months later I had a 2nd surgery to reverse my ileostomy and to remove adhesions that were strangling my small bowel and causing a blockage. In 2011 I found out that my original diagnosis of ulcerative colitis was incorrect and that I actually have Crohn’s disease. I currently treat my disease with remicade infusions and methotrexate injections coupled with vitamins, supplements, and proper nutrition, and I live life to the fullest on the days that I can knowing that a hospitalization could be (and usually is) just around the corner. Life with Crohn's disease isn't easy, but it made me pretty awesome!
How has it not affected me? It has had its effect in every single aspect of my life. Of course there are the obvious physical things like the pain, my surgeries, living with no colon, the side-effects of medication. But then there are the other things that most people don't see like the embarrassment, the isolation, and the fear. My disease took away some of my life dreams, careers, and relationships at times. It took away precious time that I could have spent with my loved ones or just living my life, but instead was spent in a hospital. There is the fear of the medications I take and what they can do to me long term and the "what if's" that exist in the back of my mind. There is the insane amount of medical debt I racked up and so much more that has made me feel like Crohn's disease pulled the rug out from under my feet and made me fall to the floor. It's hard for anyone to pick themselves back up after all that and rise above to become a positive person. But that is the thing, I am thankful for my disease. Yes, it is hard and scary and painful but it made me into the person I am today, and I like her! I have some great things that were brought into my life because I am sick and that is a wonderful thing. There is nothing I can do about the fact that I have a disease, so I might as well make the best of what I have to work with ya know?
I was diagnosed when I was a self-conscious, hyper-aware teenage girl of 14 years old. Like most teenage girls, talking about blood in my stool was totally mortifying! I didn't want to acknowledge having anything that made me different from anyone else, like a disease. As the years went by and my disease got more and more severe the isolation and embarrassment only increased. I was scared for the future and most of all I was a very angry person. I would always think "why did this happen to a good person like me?". I was so angry at one point that my mom stopped visiting me in the hospital until I could be nice because I was taking all my anger and fear out on my loved ones and treating them terribly. If you know me now then you know that I will talk about anything and everything and that embarrassment clearly doesn't come easily anymore. I am able to talk about my disease openly and honestly to anyone and I am no longer angry that I have a disease because I learned to accept it. My disease taught me how to let go of control, how to accept what is, how to appreciate the present, and how to be a happy positive person.
I wanted to give people what I had so desperately needed all the years I went through this alone, and that was a voice. Hard to imagine, but there was a time that I couldn't talk about my disease and it would have been nice to hear someone else put my thoughts and feelings into words. That is what I try to do with my videos and blogs is to share my stories, but do so in a way that someone else can see themselves through my words. It helps to know that you're not alone, and I want my "fans" to know that. Some people have a hard time explaining to their friends and family what they are going through so often they will use one of my videos or blogs to show to their families and that's a great thing! I have to admit I also have a phenomenal memory and love to learn and it was my dream to be a high school teacher so I feel like in a way I am teaching through my blog. I see so many others out there writing blogs with incorrect information or spreading myths and a little piece of me screams inside. I like that I can be a resource of accurate information and hopefully teach people a thing or two about their disease. That is my goal, to provide something for everyone whether they need support, a friend, something to relate to, or accurate information.
A lot of it comes from an inner strength because I don't have family around me and I don't get to see many people. That just made me sound like the biggest loner... I'm not a loser I swear! But in all seriousness besides my inner strength I have created myself a great family of support with friends I've made who also have Crohn's disease or ulcerative colitis. I have a great group of friends in real life who are so important to me because any time I see them I always leave with this great feeling of elation. I also have so many friends that I have acquired online that are amazing as well. It overwhelms me that complete strangers have shared so much of themselves with me and truly care and want to support me just as much as I hope to support them. It's important to have people in my life who "get it" and I am lucky to have that. My blog and other various projects keep me going too because life can be pretty lonely sometimes with a disease especially when I have been really sick and out of work. I feel like I am doing something worthwhile and it's a way for me to connect to people when things can be lonely. I also have a few great friends that don't have IBD who remind me of who I am besides my disease and that is nice. I also think it's important to "get away" from your disease and still do all the things you love. For me that is reading, the outdoors, traveling, and dancing. I don't want to be the kind of person who only defines herself as her disease, I am a lot more than that!
Thanks so much to Sara, and make sure to check back in during the next couple weeks for another e-patient feature!
We are honored to have Michael Weiss as our featured e-Patient this week. Michael is an inspiring and tireless advocate for awareness of chronic conditions and patient empowerment through health care social media. Read more about Michael on his blog. Let's get interviewin'!
I’ve had Crohn’s Disease ever since I graduated from college in 1983 or thereabouts. It started off as just a minor annoyance but it did seem to make my immune system much different than that of my friends and I always seemed to have a problem with inflammation. For example, I would get some type of sports injury and the swelling would persist twice as long as it should and any over-the-counter “anti-inflammatory” medications I tried always triggered intense abdominal pain which I would come to learn was due to my Crohn’s Disease. I never took these aspects of the disease too seriously until later on in life after MANY hospitalizations (i.e. 200+) and approximately 20 Crohn’s-related surgeries (i.e. Resections, Strictureplasties, Ventral Hernia Repairs, etc.) when I started to become much more vulnerable to other medical conditions and my body’s poor immune system response to seemingly normal life medical challenges like Seasonal Allergies became EXTREME and at times, disabling...
In summary, my present Crohn’s condition has deteriorated to the point where I am disabled as I went from taking Crohn’s Disease Biologics [such as Humira and Cimzia] which were reasonably effective in treating my day-to-day severe case of Crohn’s but then I wound up with the life-threatening lung condition BOOP [“Bronchiolitis Obliterans Organizing Pneumonia”] as a result. The treatment for BOOP (i.e., the Prednisone and the Cytoxan or Chemotherapy) then both depleted my body of Testosterone and made my Crohn’s Disease significantly worse. There are no Crohn’s medications I can now take to effectively treat what feels like an ongoing Crohn’s flare-up because I have exhausted them all. I am also frequently in severe pain due to these ongoing Crohn’s Disease flare-ups and the Partial Obstructions they cause and I am experiencing a wide range of painful symptoms due to the Testosterone depletion and possible Pituitary Gland damage. The cumulative effect of having almost 20 surgeries to treat my Crohn’s Disease also often causes me debilitating pain. I imagine I am not the typical Crohn’s Disease patient but I’ve certainly experienced its broad spectrum and therefore I only hope new medications are soon developed which will enable me to resume what was a very active lifestyle.
I was diagnosed in and around 1984. My outlook on the seriousness of Crohn’s Disease has substantially changed over time based on all I have experienced as a result of having Crohn’s. More importantly, back in the 1980s and 1990s, I refused to see myself as someone battling a chronic illness. I guess I was in denial. Therefore, I refused to become involved with organized efforts where Crohn’s patients shared experiences for the purposes of helping one another. But, my attitude changed as I was hospitalized more and more and met newly diagnosed children and their families in the hospital. I also learned a lot in the hospital from nurses and by observing other patients regarding how to best handle being a Crohn’s patient. Therefore, my heart broke whenever I would hear or merely sense a patient’s or their family’s frustration with a new diagnosis of Crohn’s Disease. That’s when in 2001 I wrote my 1st book entitled, “Confessions of a Professional Hospital Patient,” because I wanted to share the knowledge I acquired from my experiences to help these folks learn how to cope with a diagnosis of Crohn’s and then how to go on and manage the disease as effectively as possible.
For me, it all started with the potential Global Internet power I envisioned in what was really a technology-driven grass roots movement called, “Health Care Social Media” (“HCSM”). I thought HCSM could be utilized by patients of all degrees to share their respective information and experiences so that those with Crohn’s Disease and other chronic illnesses from all over the world could learn and become empowered from one another via virtual patient communities like Crohnology.com without having to undergo unnecessary and depressing healthcare experiences. So I try to “publish” candid and humorous accounts of my own medical and healthcare trials & tribulations to help others feel as if they are not so alone in their once thought of private battles caused by Crohn’s Disease and other chronic illnesses.
I “publish” this information via written or video posts on my Blog, on Twitter (@hospitalpatient), during Tweet Chats, on a Tumblr Blog, on various YouTube Channels, in a pseudo Podcast on YouTube called “The Medical Minute” and in a regular radio segment on a nationally syndicated radio show called “It’s Your Health” hosted by Lisa Davis. It is my hope that through my HCSM efforts and those of my similarly-minded patient brethren or fellow “Crohnies,” that we can make HCSM an incredibly powerful Patient Tool by patients simply helping other patients via these virtual patient communities. I also believe HCSM will be a true “Game-Changer” thus giving patients a genuine voice in all future HealthCare Reform discussions.
I am also in the process of writing my Second Book, tentatively titled, “Chronic Illness: Truths, Tales and Tips,” which will naturally encompass more of what I’ve been through but probably more importantly it will also include how much I’ve learned from other patients around the world since I’ve been Blogging and Tweeting. It is anticipated to first be released as an eBook and Audiobook in late, summer 2012.
Living with Crohn’s Disease has made me more conscious of what I eat and how it affects me almost as if I am maintaining a Food Diary in the “cloud.” It has also made me more conscious of everything from the emergency medication I have with me to the amount of clothes I bring on a weekend away with a friend. It has made me more conscious of recognizing signs; signs of an impending flare-up or signs that I am “through the woods” and can start eating again. I keep an emergency “Go Bag” in my closet which sounds cool but is really just a knapsack filled with “the basics” in case I must rush to a hospital because of my Crohn’s Disease. I classify “the basics” as clothes and other items which would make me feel more “at home” in the hospital but if I lost them they are easily replaceable. Overall, Crohn’s has made me realize that I have little control over most things in life but the things I do have control over I must be diligent about. So, whereas I can’t predict a disabling painful flare-up, I can always try to eat the right foods and keep myself in good physical condition by exercising when I can.
I look up to my Mom first and foremost because she was married to my Dad for 53 years when he passed away in 2008 and was his eager and cheerful Caretaker for many of the latter years and then was placed into the same Caretaker position with me in 2010 when my Crohn’s Disease began to become more pervasive. Instead, these should be her “Golden Years” where she gets to travel and do all the things she hoped to do with my Dad but never got the chance to do because he got very sick toward the end of his life. I feel terrible that she’s sacrificing all that to help me survive but she never complains and takes on the responsibility of being my Caregiver instinctively. At this stage in her life, she deserves better options and I hope I get the opportunity to help her in that regard. Without her constant positive encouragement and overall companionship, my life would be 100 times more challenging than it already is.
I also look up to ALL Caretakers for patients with chronic diseases like Crohn’s because the unpredictability of it all makes it almost impossible for the Caretaker to have an independent life of any meaningful fulfillment. These instinctive sacrifices have a profound effect on me because I have the utmost respect for people who put others before themselves in time of need. Lastly, I look up to the young brave men and women who serve in the Armed Forces because they make the same sacrifices as Caretakers except they put their country before themselves. Even healthy, I don’t know if I would ever voluntarily do that so I am sincerely appreciative of all they do to make my world a safer and more enjoyable place to live.
Newly-diagnosed Crohn’s patients need to understand that Crohn’s Disease is a broad spectrum illness and thus how it affects people they know is no indication of how it will affect them. They must also always keep in mind that having Crohn’s Disease will never affect their core happiness but how they HANDLE THE DISEASE will. To that end, I encourage them to watch a 3-minute Video I posted on my Blog (while I was in the middle of the aforementioned intense Prednisone treatment and thus had that “Michelin Man” face!!) entitled: What to do when you are Diagnosed with Crohn’s Disease.
Beyond the points I make in the Video, I tell new Crohn’s patients to always listen to their bodies and be resilient about this because at some point in the future they will be challenged by various doctors as Crohn’s patient complaints don’t always synch up with Crohn’s diagnostic testing...
I also insist that newly diagnosed Crohn’s patients find the RIGHT DOCTOR FOR THEM and not just the doctor who everyone touts as “the Best” or “the Brightest.” The Doctor-Patient relationship in Crohn’s Disease is more a “collaboration” than anything else so therefore it is crucial the newly diagnosed patient move forward with a doctor who understands his or her lifestyle, personality, professional aspirations, particular anxieties and their interpretation of “quality of life.”
Thanks so much to Michael for his hard work and thoughtful answers!
My name is Kat, and I am a Chronically Awesome Crohnie Warrior.
I carry the following diagnoses: Crohn's Disease, Fibromyalgia, Depression, and PTSD.
I was diagnosed with Crohn’s Disease when I was 16 years old. I define myself as a Crohnie Warrior, who is determined to use my strength daily, to battle this disease. I have had two surgeries and currently have a temporary stoma. It has altered my life. I am not where I imagined I'd be. For one, I have become very active on Twitter.
I have suddenly become a part of a health blogging community. I write because I have a voice within me that demands to be heard. We all have a voice, we all have our stories, and we deserve to be heard. I choose to use my experience as a tool to transform myself and grow. And each day I feel myself growing stronger and transforming into a chronically awesome individual who amongst other things, happens to have a chronic illness. I am discovering my gifts and talents. I have a chronic illness, but it does not have me. And that is a very powerful feeling.
I have a blog on Tumblr. I even have MY own Facebook fan page! I never would have thought I'd end up here! Yet, that's life. Sometimes it takes us different places and we learn to go with the flow. The unpredictable nature of Crohn's disease has taught me the value of being patient.
As a Chronically Awesome Crohnie Warrior, I’m not going to let my multiple diagnoses get in the way of living life to the fullest. I am learning that I have value. I am finding my strength and talents. I am focusing on what I have, rather than what I’ve lost. With the support of my fellow Crohnies and the Chronically Awesome community, I am embracing who I have become. I am a Chronicallly Awesome Crohnie Warrior. And I am unstoppable.
The symptoms of Crohn's are painful and uncomfortable. Yet I've learned to take my medications and deal with it. The mental health component is much more difficult. Crohn's and depression are interrelated. The other day I saw an internet meme of a troll, with the caption, "No Feeding". It reminded me of Crohn's. Much like a troll, it is an unwanted presence in my body, in my life. The best way for me to cope with Crohn's is by not "feeding it", by not letting myself fall into a trap in which I feel hopeless. Disempowered. I don't like to throw myself pity parties. I am not a Debbie Downer. I have Crohn's but I refuse to let it have me! By focusing on my strength, on feeling empowered, not only am I coping with Crohn's, but with my depression. I may not be in control of Crohn's, but I am in control of how I respond. As a Chronically Awesome Crohn's Warrior, I slay the troll (the fear, the self-doubt, the depression, the self pity). And I win!
At the moment, Crohn's has severely altered my life. I am recovering not only from two surgeries and a long hospitalization, but also from depression and PTSD. I know that where I find myself now is only temporary. Crohn's disease is not a death sentence. It is not to be feared. I am not trying to minimize the severity of this disabling, chronic illness. Rather, I choose to be positive and look on the bright side. Yes, my experience disrupted my life. I am unable to work, which I greatly miss. But I don't feel Crohn's has taken anything from me. In fact, my latest experience has been beneficial. It is giving me time to grow. I am making strong connections within the twitter community. I'm meeting Crohnies from all over the world. I'm becoming a health blogger. I'm opening up and exposing myself through my writing. That takes courage. Thus, I don't find the use of the term "altered" to have a negative connotation in my life. Rather, like taking an item of clothing to a tailor, to make it fit better, my situation is also altering my life. To make it better suited for me. Change is scary, but it is good.
Comfort items: nice baggy clothing (sweats), my favorite blanket, my doggie (for cuddles)
The crohnie first aid kit that all crohnies need: a heat pack/hot water bottle, chamomile tea (always soothes the cramping and also is a good sleep aid for me, helps me sleep off the pain)
The essentials: Gatorade and Ensure
Twitter: connecting with my friends who not only provide love and support, but who distract me from my pain by providing laughter.
Laughter: number one for me is a good attitude and finding laughter. My mood is instantly lifted. Laughing through the pain is a must have for me. And it works!
The person whom I look up to is my Chronically Awesome Mentor, superhero and blog mother, Jules (@julianna12369 on Twitter. I highly recommend you follow her, she is awesome!) I would not be here right now, were it not for her. She is the person who has had the most faith in me and has provided endless support. Jules is someone who I just *clicked* with immediately. She is such an inspiration, because of the challenges she has faced and overcome in her life. She is tough, she has a take-no-prisoners approach, she tells it like it is, and doesn't tolerate b.s.! She is also someone who is not afraid to open herself up and it is reflected in her blogs. She is a tough cookie with a heart of gold. I LOVE that about her. In the short time I've known her, she has shown me so much kindness, support, compassion. I see myself in her. She is helping me gain confidence in myself. Were it not for her encouragement and support, I would most likely have flaked on participating with HAWMC. But for whatever reason, Jules felt it was something I should try. She didn't push me, but she made it possible by creating a safe place for me on her blog. It has meant so much to me, as I am new to the blogging world. I hope this is the beginning of a beautiful friendship with Jules. I have a feeling it is. And I treasure it. It's an honor to meet someone as special as Jules!
At the moment I am beginning my journey as a health blogger. Besides my blog that is up both on Tumblr, and on whatthejules, I also have a Facebook "fan" page. I am slowly becoming more active in the health bloggers community. This is all very new to me, yet I am so excited to see where it takes me. I feel so empowered. I am taking what has been a very difficult time for me and turning it into something positive. I have stepped out of my comfort zone, yet I find that I am growing and healing. I look forward to interacting with fellow Crohnies and fellow health bloggers. It is a huge honor.
Thanks so much to Kat, and check in next week for another fantastic featured blogger!
This week's featured e-Patient is Damion, of My Cranky Gut fame. Let's dive in!
My gut has always been cranky. It was only recently, in my early 40's that I began to realize that not everybody experienced chronic gut issues, and that maybe something was wrong. Yes, I actually had convinced myself that guts just hurt and that's the way it was.
But last year, everything changed.
I’d been admitted to the hospital under the impression that I had appendicitis (confirmed by exam and by CT scan), but when they stuck a laparoscopic camera into my midsection, what they found was not an inflamed appendix (in fact, they never did find my appendix!), but instead a softball-sized mass of inflamed intestine. They quickly changed course and performed a 24” resection, including removal of the terminal ilium, and off my removed guts went to the pathology lab. It was a couple of days later that I was told that I have Crohn’s disease. It would be a gross understatement to say that I was surprised.
The next day I was visited by a gastroenterologist, who I’m told is one of the top GI docs in the region. His pronouncement that, ‘since we don’t know what causes Crohn’s, and since there’s no clinical data linking diet and gut health, you’re free to eat whatever you like.’, did not sit well with me at all. I was aghast that a published and respected doctor was telling me that diet and gut health weren’t connected.
After getting out of the hospital, I began working with a naturopathic doctor, who taught me about the Specific Carbohydrate Diet and low-dose naltrexone. My blog is a venue for me to share my experiences with these and other alternative therapies.
I have Crohn's disease, but it's deeply worrisome to me because, unlike other people I know with IBD, I don't suffer the same kinds of symptoms that many other folks do. Low-grade discomfort is common for me, but the searing debilitating pain that most Crohnies experience? That's not me. I describe it as 'sniper Crohn's'... it sneaks up on me and takes me by surprise, its presence not really felt until the 'kill shot'.
My life has been hugely impacted, not so much by the disease itself, but by the lifestyle changes I've chosen to make in response to it. Following SCD has had a tremendous impact on my lifestyle... I spend a lot of time in the kitchen now, and because I make EVERYTHING from scratch, I know *exactly* what's going into my body. I can honestly say that between SCD, LDN, and my surgery last year, I feel healthier now than I can ever recall feeling at any point in my entire life. And that in turn has had tremendous impact on my lifestyle and my relationships.
For me, staying 'on game' means staying 'on diet'. SCD is an incredibly powerful tool for IBD management, but it requires a lot of preparation. It's become incredibly important that I make sure that I *always* have legal food available, because if I get caught away from home and hungry, there's a high probability that I'm going to cheat.
I exercise a lot more now than I did before my diagnosis. I've been surprised at what an impact that's had on my gut... it definitely contributes to my ongoing stability.
Right now, other than Crohnology, nothing. I haven't found anything that really had the flexibility and usefulness that I wanted. As a software developer by trade, I've even considered creating my own disease management website, though once I start sketching out the requirements, it doesn't sound like such a great idea anymore! Right now, my most useful tool is a small Moleskine day planner. Each day I write down what I ate, when I ate it, when I pooped, what the Bristol number was, as well as any other notable things about the day (how I was feeling, how I slept, etc). This has been a surprisingly useful, if somewhat Luddite tool for me, and the longer I keep it, the more useful it gets.
Obviously, my blog is an important tool for me in reaching out to others working with Crohn's, SCD and LDN. It's a terrific place for me to document my experiences, good and bad, with various aspects of my own Crohn's struggle. I also try to use it as a repository for my research regarding IBD-related issues, so as to help others who are trying to learn.
I'm also pretty active in a variety of different Facebook groups. I've also discovered this cool new website, Crohnology... perhaps you've heard of it?
Clever! Yeah, we think it's pretty fly.
My wife and I are fond of doing crafty creative things together... I'm particularly partial to sewing and garment construction. It addresses both my needs to be an engineer and to be an artist.
Also, I am an instructor for the TEAM OREGON Motorcycle Safety Program (http:/www.team-oregon.org), so I spend a lot of weekends running around in parking lots teaching people how to safely and responsibly ride a motorcycle. I did not expect it to be going into it, but I can honestly say that this is one of the most gratifying and rewarding things I have ever done!
I started my blog for mostly selfish reasons. I wanted a place to publicly hold myself accountable for sticking to my diet, and to keep track of the research I was doing regarding different Crohn's therapies. But that's shifted somewhat as my readership has grown. Recently, I had a reader suggest that I write a book, because she thought my writing was both valuable and quality. I was incredibly touched that my time and efforts actually brought good and helpful information into people's lives, and it definitely got my wheels turning! If/when I publish it, she'll definitely get a mention in the acknowledgments!
Right now, just a 55 gallon aquarium with several kinds of fish in it. We lost our cat recently, and are in the midst of a cat-free period. I have every confidence that it won't be long before we have a cat (or two) again.
In no particular order:
Make sure to catch up with Damion on his blog, and come back next week to check out another featured e-Patient!
Crohnology is delighted to introduce you to this week's featured e-Patient! Make sure to check out our recurring interviews with some serious blogging talent. We’ll do the hard-nosed journalism; you just sit back and enjoy the show.
Our first honored guest is Adam, from iHaveUC.
Here's the quick and dirty: 33 years old (a few grey hairs), married, no kids yet, never arrested, graduated CU Boulder - GO BUFFS!
Did I ever think of myself running a website used in 150 countries when I was a little boy? HELL NO!
And a website that was all about blood, poop, gas, more poops and everything else that is part of ulcerative colitis? Come on...
But, you can't plan everything. And that's quite alright.
I was diagnosed with severe colitis back in Oct. of 2008, and I started the iHaveUC.com website about a year later. Shortly after launching, I stopped feeling alone, and began learning from everyone else who was adding their story to the site. (Mostly UC'ers, but some Crohn's folks too).
I never imagined there were so many people (sometimes just a few blocks away) going through such similar experiences.
One of the very first stories that was submitted was from a young girl from the country of Jordan. I'll never forget how she went into detail about why she didn't want to let her fiance know about her diagnosis and condition. She was hiding it from the person she was going to marry. You can't help but feel pain knowing someone is hiding the symptoms that come along with this disease. It bugs the hell out of me, knowing this goes on every day all over the planet.
My answer here has changed quite a bit since my original diagnosis, here's what I used to tell people who asked the "What is UC" question:
"There's this army inside my colon and they are shooting their guns off for no reason, the bullets are cutting me open, but they just keep shooting."
My favorite thing to do recently has been running interesting surveys with the colitis people from around the world. There are all kinds of questions that patients, family, and friends would love to ask the IBD community, and the internet makes that possible. Some of the recent surveys that I've conducted have been focused on topics such as Surgery, Relationships, Prednisone Side Effects, and Remicade infusions to name a few.
Now I take a much bigger interest in other people's health. Take for example someone who appears to be sick, or "not feeling good". Unless you ask, you may not learn why that person is not feeling well. So I try to ask others if I suspect they are feeling crappy. Friends, family members, pretty much anyone. I've learned that although most people are shy when it comes to discussing health problems, if you ask in a sincere way, the conversations can usually go on forever. Being a good listener is a great skill, and one that I'm always working on improving.
I'm the type of person who has new projects all the time, maybe too many, since so many go unfinished. The current project is in the early planning stages and involves lots of water, lots of salt, some wind, some sandals, and a few passports.
Taking some alone time and going on walks is super important to me. I'm the guy who loves to walk out of work and go on the 10-20 minute walk around the block by myself and let my brain do its own dance. It's not so much the exercise, but the simple pleasure of being outside, moving around, and thinking up new ideas is more important to me than most of the junk I've accumulated in the closet. A nice little walk always makes me feel better.
Yeah actually, some friends came over last weekend that my wife and I hadn't seen in a while. A year earlier we were at a restaurant doing the "what type of business could we start" and I guess we talked about a monthly sock club. Somehow I forgot all about the talk, but they went ahead and got the idea going. I hope they do real well, they're super cool people.
Stuffed bunny rabbit toy (Made in China)
Dana recently wrote an incredible post:UC on the Subway
Kim's story is so relatable and the discussion proved it:My Life Now - NOT an Eating Disorder
A doctor who has UC wrote his story just a few weeks ago too:The Urgency is So Frustrating
Thanks again to Adam, and stay tuned for our next featured e-Patient Blogger!
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