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.

World Rare Disease Day

Feb28

Today is World Rare Disease Day. One of the first things I thought when I heard this was, “Do I fall in this category?” Yes I have a disease but is it considered a rare disease? Just because so many people have no idea what IBD is doesn’t necessarily make it rare.

According to the National Institute of Allergy and Infectious Diseases (NIAID), a division of the US Department of Health and Human Services that accumulates and publishes the statistics for Crohns disease and other health problems, one in 500 people suffer from Inflammatory Bowel Disease (IBD), the group of diseases that includes Crohns syndrome and ulcerative colitis. The National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK) reports similar numbers. Approximately 544,000 people suffer from IBD in the United States. There are typically three or four new cases per 100,000 people reported annually. – Article Source: http://EzineArticles.com/289309

Looking at those numbers, 1 in 500 people suffer from IBD, I would say no. But go online to a social media site like Twitter and anyone with IBD is proudly letting everyone know they are celebrating the day. As much as I love advocating for my disease and help bring awareness to it, is it right to drown out others trying to raise awareness for really rare diseases?

As I was pondering this at 8:00 in the morning, I was forwarded an article found here http://bites.today.com/_news/2013/02/27/17121375-restaurant-to-non-patron-you-must-pay-to-pee?lite This isn’t necessarily about any illness but anyone with IBD understands the problems with this kind of thinking. And that leads into how so many people don’t know about IBD.

So is it a rare disease because people don’t know about it? About 10 years ago most people probably didn’t know what HPV was. Now it is known that it is the main cause of cervical cancer. It wasn’t a known disease yet it was far from rare as it was determined that almost everyone that has had sex has at one point in their life had the disease.

I talk to a woman online who is pretty big in the IBD community. She suffers from a condition that causes inflammation all over her body. Everyday is a challenge for her. No one even knows how to treat it at this point because not that many people suffer from it. To me, this is a rare disease. This is something we should spend the day talking about and educating people on.

I love advocating. I love everyone I have met doing it. I talk to so many great people who have decided to speak up for IBD. We have a big community and we are becoming very vocal. But are we rare? I wish I could say yes, but we aren’t. I think we need to put our needs aside for one day and focus on those that really need help, because with rare diseases, there is little help out there. There are almost little amounts of treatments available and even less cures. For us with IBD we have a lot of options, even if they aren’t helpful. There are many that suffer with no treatments available. Today I will think of them and hope for some help. It is the least I can do.

Wego Health HAAWards Finalists

Feb23

I know I haven’t written much in the past month. I have been really busy with so many things that I haven’t had the time to come on here. But, I do now and I have great news (well, great for me) 🙂

Last year Wego Health opened up nominations for their Health Activist Awards and I was nominated for the Ms?Mr Congeniality award. This past week they announced all the finalist and I made the cut. So I am now one of 5 finalists. Sadly I am not up for any of the other awards I was nominated for but that is ok. Just being nominated is an honor.

So, I was sitting here thinking about this award and just what the category is all about. Mr. Congeniality. Anyone that knows me might say I am far from this in real life. I can be very loud at times and even rude. I would have to agree with those people because, yes, I am. I know I am and I am ok with it. But online, I am another person. When it comes to an illness, you have to be different. I don’t mean in a talk in hush tones and walk on eggshells different. It is just that I know what it is like to be sick with a disease no one really understands except for the people with it.

Part of going through life with IBD is that no one can see it and most definitely most people don’t understand it. Heck, CCFA wants to show everyone it is a pooping disease. Because of this many of us are depressed, angry and just can’t cope. It isn’t easy to deal with a disease when no one around you can help you out. I understand all of this and I know if I spoke to anyone with IBD in a nasty tone, it would not go well. So I have to alter who I am. When it comes to people with any illness, I turn into a caring person. I used to not want to deal with illness but now, I have made it a part of my life. And I am using it to grow. Because I change who I am to people online, I am trying to be a better person in my real life also. I am trying to be more caring, more understanding and less abrasive.

People online see me as a congenial person and when my wife saw I was nominated for this award she laughed. This really hit me as it was really then that I noticed I was two different people (that’s the Gemini in me). So just being nominated for this award has already helped in changing me. I am now trying to be a better person. Not just to sick people, but to everyone.

As for the award, I share the honor the honor with some other people who have now opened my eyes to some other illnesses that I didn’t even know existed. I hold nothing against these people even though I am battling with them for the award so I want to share who they are and their site. They are:

Barby Ingle – www.barbyingle.com

Pamela Sloate – http://dystoniamuse.com/

Peachy Pains – www.peachypains.com

Tosha Sisler – www.bottledtime.wordpress.com

Good luck to everyone for the final spot and no matter who is given the award, we are all winners.

Gluten Free Rant

Feb6

I went out to eat this weekend and something jumped into my head that really got me thinking. Many restaurants are now serving gluten-free meals. They recognize there is a big issue out there and they are now catering to the many people out there that can’t or won’t eat gluten. I like that. I am happy for that.

I work in the hospitality industry. Maybe one day I will own my own restaurant. What I know is that when you open a restaurant and create a menu, you can’t keep that same menu forever. You have to change it over time to keep up with trends and what the customers want. Many restaurants do this and are now moving to keep up with the gluten-free movement. This is a good move on their part. There are even gluten-free restaurants which I think is great.

Now, here is my rant. I went into a big national chain restaurant (who will remain nameless) and they had a gluten free menu. I loved it because items I thought had gluten in them on the regular menu turned out to be gluten-free. I placed my order (my wife ordered from the regular menu) and then they brought out the bread. Before I went GF I loved their bread. Now, I looked at it and drooled knowing I can’t touch it. On another day I was in a diner and again, the bread basket comes out with delicious looking items.

With this big push to be Gluten Free sensitive the one thing that hasn’t really changed is the bread basket. As anyone on a GF diet knows, this item is a major no-no. Bread is a big component of gluten. So why isn’t anyone focusing on this item. This is one item to change very easily. There are tons of GF breads and rolls out there. There are GF bread sticks and crackers. Why can’t restaurants include these items for us GF customers. Why are we forced to either drool over the regular bread baskets or sit there alone. Now, I am not asking these restaurants to make their own. I know there are many places that are real small and don’t have the kitchen space. I am fine with that. But you can buy them and put them in their own basket for us GF dieters.

What also gets me is in the chain restaurant they at least asked if we wanted the bread. In many places they don’t ask. I know first hand bread costs have gone up. If they would stop bringing out the bread automatically they would probably save money which they can spend on the GF bread.

Eating out in a restaurant should be an enjoyable experience. I used to love going out to different places. Since going GF I enjoy it less and my selection of restaurants have decreased. Being teased at a restaurant makes the experience even worse.

Ok, rant over. And now I want a slice of bread.

Gluten Free Beef Stew

Jan28

It’s been awhile since I said I would post recipes so, here is another gluten-free recipe which is pretty IBD friendly..or at least for some IBDers.

Being that the temperature has been in the 20’s and I have been freezing my butt off lately, I wanted something that would be satisfying and warm me up. I was getting tired of my usual weekly menu and needed a change. When I was online one day, I saw a recipe for beef stew for a crock pot and I thought, I don’t have a crock pot but I can still make the stew. So, I went out shopping, got the ingredients, and made way to much stew. But is was so worth it because it was soooo good. And the cold will be around for a while so I have meals for another day.

Now, for the recipe, I didn’t measure out anything and it made about 8 servings. This is a dish that exact measurements aren’t needed and you can add whatever you want.

Ingredients:

1 1/2 lb cubed steak
3 Carrots – peeled and rough chopped
6 Celery Stalks – rough chopped
1 Parsnip – peeled and rough chopped
2 Large Potatoes – peeled and rough chopped
1 Onion – peeled and rough chopped (pearl onions work well also and require no prep)
1/2 Frozen Peas
64 oz Beef Broth
2 cans Diced Tomatoes
Olive oil
Gluten Free Flour or Corn Starch

Take your steak and coat in either the corn starch or flour. I decided to use flour just out of personal preference. Heat oil in a large stock pot and sear off meat. You don’t want to cook the meat all the way through, just brown it. You are sear it to seal in the juices. Also, you can do this in batches if the pot isn’t large enough.

After the meat is browned and removed from pot, add onions and more oil if needed. Saute the onions until soft and translucent. If you are using pearl onions, do not do this step. They will be added at the end.

When the onions are done, add some flour to make a roux. Cook this for a couple of minutes until the roux starts to brown. Add carrots, celery, parsnip, potatoes, beef, and stock. Stir well. Add any seasoning you like. They can be fresh or dried. I added some basil, oregano and salt. Again this is to your preference. Bring the stew to a boil.

When it boils, reduce heat to a simmer, cover and let cook for about 1 1/2 hours. When the stew is done, add the canned tomatoes and peas. If you are using pearl onions, add them also. Bring back to a boil and remove from heat. If the stew is still thin and not to your desired thickness, make a cornstarch slurry to add to it to thicken it up. Serve with some nice crusty bread.

I Have Reached My Boiling Point

Jan24

Yesterday I came across an article. It started because I was wondering how voting for the Restroom Access Act, aka Ally’s Law, went in Virginia. I looked it up online. I was appalled at what I had found. The act was defeated without a single vote cast. That means that every politician that had the right to vote on it agreed that it wasn’t worth their time to even discuss. I was outraged by this but was soon about to get even more pissed off.

Continuing my research I found and editorial written for a Virginian newspaper. It was written by Kerry Dougherty and can be found here. Please go read it. I will wait until you finish reading it.

…

So you finished it. I can see how red your face is. I guess she made you as mad as I have been for the past 18 hours. How can someone be so ignorant not only to people with IBD but to me it seems like she is against anyone with a disability.

But lets break down some of what she had to say. First, she writes, “And it marked the death of one more over-the-top, well-meaning measure cooked up by a Northern Virginia Democrat. Another bill that would have attempted to legislate common sense.” – First, does it matter if the person introducing the bill is a Democrat or Republican. What just because a Democrat introduces something it is immediately bad? Next, a bill that would attempted to legislate common sense. Yes, it is common sense and yet it is ignored. Why do we have to fight to use the bathroom. IT IS COMMON SENSE and yet people will still not let you use their bathrooms so yes we should have a law.

“The impetus was an Alexandria teenager who was diagnosed with Crohn’s disease about two years ago. After being barred from the employee-only bathroom in several retail stores, he told his mom he wanted a state law that would make it illegal to turn away someone with a legit medical condition.” Man, this just shows the author didn’t do her homework. HE TOLD HIS MOM—-Ally is a woman, not a man. I have spoken with her and she is amazing. Follow Ally here on Twitter. See, she is a woman.

“If only adults or civics teachers would teach kids that there are better ways to fix problems.” – Um, Ally found a problem and is fighting for the government to back her in her fight against injustice. What better way is there to fix the problem? I would love the author to suggest just one way.

Lastly, the author goes on to tell a story of how she was in a nail salon one day. A woman came in to the place, looking like she was in an emergency and asked to use the bathroom. Afterwards it turns out she stole some wallets. So, now everyone with IBD is being compared to thieves and criminals. None of us can be trusted. WOW!

I have seen a lot of prejudice in my life. I have seen discrimination. I have seen bigotry. This editorial takes the cake though. Just weeks ago the CCFA launched a campaign which so many of us agreed was way to light. It showed that we mainly use the bathroom and that there are no other problems. Maybe if they had used a more aggressive campaign, Kerry would have a better understanding of what we go through every day of our lives. I won’t get into it as that is a whole other post. But Kerry’s ignorance shows the need for more awareness. IBD is still mostly unknown. People think we are making up our symptoms.

Shame on you Kerry. Shame shame shame.

Book Review – The Directive

Jan20

Lately I have been seeing a lot more books about IBD. I decided since I love reading to start reading some of these books. I have been impressed by the stories and I decided that maybe I should post some reviews. So, here is my first one for the book The Directive by Rosa Fontana.

I will start by quoting the synopsis from the back of the book. “Lynne McKay is a peculiar twenty something college student. A boring essayist with limited social skills, she is woefully unaware that she’s a recluse in the making. Having experienced life vicariously – only through the books she has read and over-analyzed – she is unprepared when her life is interrupted with the diagnosis of Crohn’s Disease. After being admitted to the hospital, Lynne must shed her introverted shell in order to survive. With an IV pole in hand and a VIP pass to the marble throne at the ready, she reaches out to an unexpected and insistent comrade, Peter, who suffers from the same disease but has penchants for mischief and empathy. During their time in the hospital together, Lynne must consider: is this diagnosis a second chance at life or is it her death sentence?”

My first thought when I saw this book was that it was written by a woman and is told through the eyes of a woman…so would this just be a mushy love story. Thankfully, I was wrong. The book focuses a lot on Lynne and her disease. It deals more with her battles while in the hospital. As I read the story I couldn’t help but feel some of the pain. She describes the disease, treatments, med reactions so perfectly. The author has Crohn’s disease so she was definitely using her experience. However, reading the story I almost felt like this was an autobiography. After talking to Rosa on twitter I would find out it was only based on some of her experiences and people she has met.

I thought this was an excellent read. I had a hard time putting the book down and found myself relating to the characters a lot. I didn’t want this book to end and I really hope she decides to write more about Crohns.

If you want to buy the book you can buy it here. Also, check out Rosa’s page and follow her on Twitter here. Out of 5 stars I give this book 5.

My First Real Attempt at Advocacy

Jan11

For the past year I have been doing my blogs, talking to people online and even participating in the CCFA’s Take Steps. Late December I decided to kick it up a notch.

I was reading a lot of stories online about people with IBD having to pull over on the side of the road to immediately relieve themselves because there were no rest rooms in sight. Now, this is of course dangerous and illegal. It can cause problems on the highways and can even get the person stopping killed by getting hit by a car.

So I am sitting there reading these stories and I start to think of my experiences travelling on the interstates. I think about how you can go for miles without any exits or rest stops. The wheels in my head started turning and I had an idea. I started first by emailing my state representatives. Of course I got no responsive. I asked for assistance from some people on line and they helped me with thoughts and getting a letter drafted. Lastly, I started a petition online.

You are probably now wondering what I am talking about. Well, I am now starting a campaign to get port a potties put on the side of interstates and thruways. The petition can be found here and if you live in the USA, please go ahead and sign your name to it.

Now, if you have stopped and read the petition, you probably have a lot of questions about it. Yes, there are security issues, sanitation issues, etc etc etc. I know there is a lot that has to be worked out with this project. I don’t discredit all that. This petition isn’t meant to be a simple solution fix. I meant for this to be the start of something. It is made to get the ball rolling and make people see that there are major issues on the roadways for people with IBD.

If you can, write your congressmen and senators. Let them know of the petition. Let them know that we are no longer going to sit by and be ignored. It is time for us to raise our voice and be heard.

My Take on the Escape The Stall Ads

Jan11

Yesterday I read a blog by another blogger, Marisa, which can be found here. This lead me to a post written by Sara found here.

The reason I mention these two blogs is because they kind of opened my eyes to the new campaign going on by The Crohn’s and Colitis Foundation of America (CCFA) called Escape the Stall (http://www.ccfa.org/escapethestall/). The face being put to the campaign is Amy Brenneman who is known from such shows as Private Practice, NYPD Blue, and Judging Amy.

First, I applaud Amy for coming out of what I call the IBD closet. It is great to have another face to the disease. I am also very happy that the CCFA is finally putting ads and stories out there nationally. IBD is usually talked about quietly in dark corners. CCFA is now bringing out into the open and I am very happy and thankful for that.

I had read the reason for why they went with this campaign and at first it didn’t bother me. I admit I have used bathroom humor in the past as I have a page on Facebook called Bathroom Talk. But as I look into myself, I know I did it as a way to cope.

Over the past year I have learned so much about IBD. Crohn’s and Colitis is no laughing matter. Yes, a lot of us use laughter to cope with our chronic illness, but in no way should the illness be looked upon in a funny way. As the ads show, we spend a lot of time in the bathroom. Anyone with IBD knows this is a reality..but it is a small part of the disease. And this is where I come to the realization that the CCFA ads are not a good idea.

So many people with IBD are sick. They have no energy. They can’t do simple things like get out of bed. Some people are in constant pains. Belly pains, joint pains, muscle pains…just overall pain. There is nausea, fevers, rashes, and eye problems. We take horrible medicines that give us really horrible side effects with some of those being untreatable cancer. Many people with IBD have numerous scars from many surgeries. Some people spend months in a hospital bed hooked up to tubes. Many suffer from drastic weight lose and look like walking skeletons.

Now you are probably thinking, “Wow, people with IBD have it bad”. Well, yes we do. But looking at the new ads, all you would think is that we spend a lot of time on the toilet. When people put out ads for cancer we see bald people hooked up to chemo. When there are ads for emphysema we see broken down people hooked up to oxygen tanks. The no smoking ads in NYC show people with amputations, trach tubes, and just looking horrible. So where is our graphic ads?

When it comes down to it, seeing an underweight person with IV’s and an NG tube laying in a hospital bed with some surgical scars would be more effective than saying “Hey this person poops a lot. Help them out”. I recall when I first got diagnosed as a teenager with Crohn’s that my doctor told me that I would most likely have at least one surgery in my life due to the disease. Where is that fact in the ad.

I am grateful for all that CCFA has done and continues to do. I will be volunteering this year for their Take Steps walk and hopefully for Camp Oasis. But I have to say that I am shamed by their new and first national ads.