The Foul Bowel – A Book Review

Mar15

I recently finished reading The Foul Bowel: 101 Ways to Survive and Thrive with Crohn’s by John Bradley and I have to say, if you suffer from IBD, especially Crohn’s Disease, then you must read this book.

First let me say that it took quite awhile to read this book but that is no reflection on the books part. I usually read my Kindle going to and from work and at night I wind down by watching TV. So I basically read this book in some spare time or before going to bed if nothing was on TV. So it was my own fault for taking a long time to read it.

I actually thought this book was interesting. It is a recap of John’s journey with Crohn’s disease from his young adult life to the present. He talks about his numerous surgeries (13 of them) and how he deals with the disease in his life. He learned to tailor his lifestyle around his disease instead of letting his disease run his life. He stays upbeat throughout his struggles and always looks on bright side of life (couldn’t pass on the Monty Python reference since John is British).

What really got me about John is that even when he was near death, he focused on the good things in life. John is inspirational to so many people. Even though throughout his life he suffers, he manages to hold a job, find love, and live his life. He deals with tons of incompetent doctors all the time and still doesn’t let that slow him down.

Throughout the book John gives his words of wisdom…all 101 of them. They are his versions of how to deal and beat this disease. They are usually right on the money and I found myself thinking…why didn’t I think of that before. John also uses humor to liven up his story. Without it you would look at his life and cry for all his pain but he looks at his life and chooses to laugh. Laughter is a source of healing and it is no wonder why John has continued to beat this disease.

Check out the website , read the reviews, then order your copy. Then go to Twitter and let John know how much you loved the book.

Crohn’s Disease Warrior Patrol: A Charity Is Born

Mar15

This is a repost from http://www.healthline.com/health-news/crohns-warrior-patrol-charity-sponsors-hospital-visits-031313 The article was written by Jaime Weinstein, a fellow online health activist

No matter where you turn these days you see commercials and print ads featuring #Hashtags, links to Facebook and Twitter pages, and QR codes for corporate contests. However, social media isn’t just for advertisers; it’s for patients too.

Social networks are a means for patients living with IBD who are located across the globe to reach out to and communicate with one another. It was also the catalyst for Michael A. Weiss to create the Crohn’s Disease Warrior Patrol (CDWP).

A Beautiful Idea

In the late fall of 2012, Weiss, a lawyer, author, and long-time Crohn’s disease survivor, blogged about the need for patient support from others who understand things that only other IBD patients can. A few weeks later, Weiss was contacted via social media about meeting with a young patient named Damon, his mothers, and his older brother.

Ivy Lindsay of Comfort Ostomy Covers by Ivy was originally contacted by one of Damon’s moms to create personalized ostomy covers for Damon, who was having a hard time coping with not one but two stomas (ports in the abdomen that are used to remove waste from the body). One of Weiss’ blog readers and Facebook friends who also happens to be an IBD advocate, Jeffrey LeVine, told Lindsay to speak with Weiss about her young client.

They talked at length about the young patient and his needs, but something was still missing: another IBD patient with an ostomy whom Damon could relate to. In came Marisa Troy. LeVine introduced Troy into the fold, and few phone calls later, arrangements were made for the trio to embark on their mission to meet Damon and raise his spirits.

“Marisa was amazing with Damon and I was impressed with her ability to make him feel at ease while she was also being so candid about her own experiences,” Weiss said of Troy. You can read more about the CDWP’s inaugural visit with Damon here.

This was the kind of interaction Weiss envisioned when he blogged, “Patients helping patients is the best medicine.”

The Birth of a Non-Profit

After meeting with Damon, Weiss embarked on a quest to expand the CDWP. He wanted to create an organization to connect Crohn’s “warriors” and advocates with hospitalized IDB patients to offer them comfort and a friendly, in-person visit.

Several of Weiss’ social media contacts referred him to Alex Fair, CEO of Medstartr.com, a website that utilizes crowd funding for healthcare start-ups. With the help of Fair, a few lawyer friends, Wall Street financiers, and Foundation executives, Weiss crafted a multi-phase business plan for the CDWP and will file for Tax Exempt Status from the IRS as a Charitable Foundation under section 501(c) 3 within the next few weeks.

The CDWP: Not Just for Crohn’s Patients

The CDWP is not just for Crohn’s patients, it’s for all IBD “warriors.” And through the Medstartr initiative, Weiss is hopeful that CDWP will be embraced by IBD medical practices, psychological practitioners, hospitals, and pharmaceutical companies.

If you would like to become an IBD “warrior” helping other patients in your area, you can sign up at: http://crohnsdiseasewarriorpatrol.org/.

I was happy to be involved in this meeting with Damon. I felt like my part wasn’t that big and I was just doing what needed to be done. My original post about this can be found here https://aguywithcrohns.com/2012/12/31/goodbye-2012-hello-2013/.

“Ah The Sweet Nectar of the Gods”

Mar8

Every morning I think this as I take my first sip of coffee. Ever since my days working in Starbucks I have had a love for coffee and I look forward to it every morning.

But this post is not about coffee. Today, this phrase will be said about another liquid, a liquid that has been around for centuries. This liquid is used in every culture in one form or another. It is so old that it is even mentioned in the Bible, I believe starting with Noah. He drank this after he found land when the flood receded. This sweet nectar is of course wine.

A couple of months ago on Twitter someone wrote that wine seemed to help their Crohn’s. For whatever reason, whenever they drank wine, they felt better. Another person and I started joking about it but it got me thinking. What if there is some connection between wine and IBD. What if drinking a glass a day somehow could reduce symptoms and help.

By now most people know of the health benefits of wine. We know they have tons of antioxidants.

“Antioxidants in red wine called polyphenols may help protect the lining of blood vessels in your heart. A polyphenol called resveratrol is one substance in red wine that’s gotten attention. Resveratrol might be a key ingredient in red wine that helps prevent damage to blood vessels, reduces “bad” cholesterol and prevents blood clots.” – http://www.mayoclinic.com/health/red-wine/HB00089

Lower Your Cholesterol

Alcohol also can have a very powerful effect and increase HDL “good” cholesterol by 20% if used moderately and in the context of a healthy diet along with regular physical activity, says Rimm. Higher HDL levels are linked to lower risks of heart disease.

“The research evidence points to ethanol, or the alcohol component, of beer, wine, or spirits as the substrate that can help lower cholesterol levels, increase ‘good’ HDL cholesterol,” he says.

Boost Your Brain

A recent study shows a boost in brain power for women who enjoy a little alcohol. The study, published in the Jan. 20 issue of The New England Journal of Medicine, evaluated more than 12,000 women aged 70-81. Moderate drinkers scored better than teetotalers on tests of mental function. Researchers found a boost in brainpower with one drink a day. Moderate drinkers had a 23% reduced risk of mental decline compared with nondrinkers.

source – http://www.webmd.com/food-recipes/features/wine-how-much-is-good-for-you

Now of course as you can see, none of these studies have anything to do with IBD…so I decided to do my own experiment. I have never been a big wine drinker and when I do drink wine, it is usually white wine. Over the years though I have wanted to get into red wine so now was a good time to start. I have a bunch of reds just sitting in my apt. Many were gifts that I received and of course never drank. So I took one that was supposed to be really good and cracked it open. (Yes it was really good..best red wine I have ever had) I limited my self to only one glass per sitting so it took about a week for me to finish it. Funny thing happened…I started feeling better. I had been having a flare and it was now going away. My trips to the bathroom were slowing. Could it be the wine was actually helping. I decided to go a couple of days before my next bottle.

In the non wine days, nothing bad happened but I didn’t feel like I was reaching some great breakthrough either. So, crack open another bottle. This time I started spacing out the days I was drinking it. There were days I just wasn’t in the mood for it, other days I had work to do and didn’t want to drink that night. So it started to become a rarity that I was drinking and I have to say, I have started to feel bad again. The past couple of days I have had some depression. My bowel movements have increased again. I have been having some pain in the mornings.

So this up coming week, I will try to drink more wine again and see what happens. It is hard to believe that something that is so simple can be a big help. I will keep you updated on how the experiment is going. If I start to feel better again, I might start actually keeping a journal to document this as it might be a real worth while experiment.

Today is Friday. It is snowing outside. It is cold. This week at work has not been good. I can think of nothing better than ending the night and week with a little libation. Let’s raise a glass of vino to our health and hope that maybe one day we can all literally drink our troubles away….or at least our diseases.