The Crohnology Blog

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'!

Please describe your condition in your own words.

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.

When were you diagnosed? How has your outlook on your condition changed since your diagnosis?

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.

You seem very active in the e-patient community; can you tell our readers about your efforts?

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.

What are some ways in which Crohn’s has altered your day-to-day life?

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.

Who do you look up to, and why?

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.

You've clearly thought and written in-depth about your life with chronic illness. Is there anything you'd like to say to newly diagnosed patients?

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.”

Can you recommend some of your favorite posts from your blog, Professional Patient Perspective?

• Reprise – You Know You Are A “Crohnie” when…
• Crohn’s Disease – A Teenager’s Wise Perspective
• What to ask your surgeon before your 1st Crohn’s Disease Surgery
• The 25 Most Effective Patient Tools to Manage Chronic Illness

Thanks so much to Michael for his hard work and thoughtful answers!