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Category Archives: Living with the Disease
Health Activist Writer’s Month Challange – Day 2 Introductions
Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
Hello. My name is Jeffrey and I am a Crohnie. Well, that is how I would imagine an introduction would go in an anonymous IBD support group. Of course, an intro like that kind of has a negative stigmatism to it because it reminds us of intro’s used in AA which, even though it is a good group, you go there because of an addiction.
Well, having IBD is kind of like an addiction. It is something always on our minds. We take drugs to forget the pain we are in. And no matter how much we want to forget about it, we seek out others who have the same so we can relate and fit in. But, IBD is NOT bad.
That is #1. IBD is not something we can control and it is not contagious. IBD is an auto-immune disease and we have no control over it. Like many addictions, IBD is condition that happens and we have no control on how it will act. We can try to manipulate it with medicine, exercise and diet but it will ultimately act however it wants. It is the body attacking itself so there is nothing that will spread to someone else when you cough, sneeze or bleed. You can’t give it to someone else. It is a genetic disorder that needs a lot more understanding.
#2 – People with IBD at times are in a lot of pain. There are different types of disease under the IBD umbrella. They all act differently and there are different severities to them. But over time, anyone with IBD will experience pain. The worst thing about this is that the casual observer may not know this as you can’t tell just by looking at someone. People with IBD get good at hiding their pain so you might not know just how much pain they are experiencing. But know, it is there.
#3 – A lot of people with IBD feel alone. They don’t know anyone else with the disease and because it isn’t a well-known disease, no one understands what they are going through. This lead me to my activism. I grew up alone and in the dark with my Crohn’s. There was no internet. It was hard to find information about IBD, let alone meet people who had it. Now with our global community, I have taken to the web to let as many people with IBD know that You Are Not Alone. Within the past year I have learned so much about my disease and met so many great people. This is the main reason I do what I do. I don’t want anyone to grow up in the dark. Whether you are 8 or 68, you are not alone with your disease.
#4 – IBD is not a death sentence. Many people with IBD feel like their life is over. For some that spend months at a time in a hospital, living a normal life seems impossible. For some, they have to live with a stoma and feel like they can’t live like that. From what I have seen and learned this past year, you can live a great life. IBD does not kill. I know I can get into a debate over this because IBD can cause other problems, which in turn can kill a person….but IBD alone will not end your life. You will survive. I recall words from a fellow activist who is currently struggling herself “You are strong, you can do this. You are a fighter”. IBD can and will cause depression but just know that you will live and get on with your life. Try not to focus on the past and all the problems. Instead try to look at what you want to do with your life and try to make it happen. Baby steps. Don’t try it all at once. But you will find that if you make the attempt, you just might succeed. The more you focus on the good, the less you will think about the bad.
#5 – IT IS NOT YOUR FAULT!!!! I think everyone with IBD at one point in their life looks in a mirror and asks why me. They try to look at what they did in their life to bring on their disease. Was it something you ate, or a procedure that you went through. As I have stated before, this is a genetic disease. You did nothing but be born with a gene. Nothing you did brought on the IBD. It just chose to rear its ugly head when it did. I have learned that instead of asking the Why Me question, I know ask, what can I do to calm the beast.
IBD really is a bitch of a disease. It is still largely unknown to the general public and a lot more research is needed. We need to bring more awareness to this disease. I speak up now to help educate others. If you meet someone with IBD, don’t be scared of them. Don’t ask how they are because odds are they won’t tell the truth. Deep down, they are probably hurting. Instead, give them a hug and be there for them. Listen to their words. No matter the age of the person, I think we are all still a scared little kid just wanting some comfort and to know that everything is alright.
Health Activist Writer’s Month Challange – Day 1 Getting Started
Here we go again. Seems like just yesterday I was blogging everyday for WEGO Health. Well, it is a new year and a new challenge. So, without further adieu, let’s jump right into it.
Why HAWMC? This is our third year of the Health Activist Writer’s Month Challenge – why did you get involved this year? Are you a newbie to #HAWMC or a veteran?
I have to say I was torn on whether to do this or not. Last year I got burned out from writing every day and it kind of turned me off of blogging for a bit. When I got the email for the challenge I didn’t know if I wanted to participate. Now I read this question, and I know why I am doing this.
I got involved this year because when I blog, it isn’t always about me. What I write is more to inform and help others. I am doing what I do so others can learn and know that they aren’t alone with their disease. Yes, the stories are about me and my experience but I don’t tell them to be vain or brag. I tell my stories to inform others. I share my experience with LDN and Gluten Free so anyone thinking about them can see what it is like. I don’t even write to get recognition. I just want to help.
To answer the second question..I don’t view myself as a newbie but not quite a veteran either. I have been blogging for a little over a year now. I have gone from not knowing anyone online to being part of a great community. I have met so many great people and have even been told how my blog has helped them. Since I have been blogging almost every month since starting and already doing a Writer’s Month Challenge, I can’t say I am a newbie. For me this is now sort of repetitious. But I do it for you, the reader.
Now that you have read this, and if you read my blog often, I want to ask you a question. Why aren’t you participating? Well, for some of you, maybe you are. But for the ones that aren’t why not. Why not start blogging yourselves. I can say it is definitely therapeutic and helps in releasing stress. It is a great way to meet others in the same situation. And it is a great way to help others. If you do have a blog, leave me a message telling me what your site is. Share it with everyone. Let’s make our great community even bigger.
Crohn’s Disease Warrior Patrol: A Charity Is Born
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”
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.
Wego Health HAAWards Finalists
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.
I Have Reached My Boiling Point
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
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
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
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 th
e 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.
A Guy With Crohn's 