Absence Makes The Heart Grow Fonder

Aug31

I want to start off by apologizing. It has been over a month since I have posted and for anyone looking for a new posts to come here and find none I am sorry. Life has been very busy and sadly I haven’t had the time to get online to write a post.

Now that the summer is winding down and autumn is on the horizon, things will start to slow down a little. Work has been very very busy but after September all will quiet down there. At home, I am still doing board of director stuff and again, in October that might slow down also.

One thing I want to talk about while I have the chance is diet. As many of you know, weight has been an issue with me. I have talked about my journey with weight loss and doing a diet through Weight Watchers. This past year had me so busy that I stopped going to meetings and eventually stopped the program. I had hoped that I would finally be ok and keep the weight off. Sadly, I am now back in the boat of weight gain. It is slowly coming back and like Crohn’s…it is annoying the F out of me.

Like IBD which can flare up at any time, weight gain comes when it wants. So I am back with my demons trying to figure out what to do. I am still Gluten Free and that makes my diet issues even worse. I feel so loss on what to eat and what to do. As anyone knows, when you feel loss you feel stress. Stress then causes me to eat and the vicious cycle starts. Stress also makes IBD worse and causes flares.

Overall, I am still doing well with my CD. I see my GI in just over a week and I know it will be an uneventful meeting. He will probably won’t have me return for 6 months (I hope) which means my next visit after this could be the colonoscopy time. Ugh!! I am still on LDN though so I am curious how it is affecting my insides and if it has helped in the healing processes any. I feel great so I hope there is some significant healing.

But back to the diet. I went into a very big IBD chat group on Facebook to find out what other overweight IBDers have done as far as diets. Sadly, I didn’t get the answers I was hoping for. I did get some good advice, but overall it wasn’t what I was really looking for. A big advice was to cut back on carbs, which I will try. It isn’t easy as I have realized that I have an addiction to carbs. The other big advice was to increase protein. It was recommended that for breakfast, instead of cereal to eat leftover dinner protein. Um….no. That may be fine for some people and for some foods I can maybe do that…but overall, no. When I eat breakfast, I am still half asleep and so are my taste buds. They don’t need a shock of BBQ sauce or Teriyaki in the morning.

What I am curious, and I hope some people will feel ok to open up, what do some of you with IBD do to lose weight. I know most automatically lose weight, but for those of you that are like me and still have weight issues, what do you do. What works and what doesn’t. Feel free to leave a comment or even email me. I would love help from everyone and I really could use some direction.

The Health Activist’s Writers Month Challenge – Day 23 Technology

Apr23

Write about how your life would change if there was no social media.

I kind of touched on this is some of the other posts that I have written. What would I do, or better yet have done, if there were no social media?

No social media. That means no Facebook, no Twitter, no Instagram, no Pinterest…etc. That would be almost no interaction with other people with my disease. Well, for most of my diseased life, I didn’t have any social media. I grew up and was diagnosed in the 80’s. There was no internet. Computers were still in their infancy. And I think by now you know how I dealt with my disease. I ignored it. I didn’t know anyone else with IBD. I didn’t talk to anyone about my disease. I just lived day to day ignorant of what my disease was all about.

In all honesty, I haven’t been on social networks for that long. I have only been on Facebook for maybe 5 years…Twitter for a little less. Since I have had my disease for about 25 years, social media has played a small part overall in my life. However, it has made a major impact. It has helped me come to terms with what I have. I have found an outlet to help speak my mind and deal with issues.

Social media has really helped me in one way. It helped me get the courage to start this blog. It was only after talking to some people that I decided to do this. I would never have met them without social media. It all started with YouTube. That is where I saw videos of inspiration. I then went to Facebook to talk to these inspirational people. Without those two sites, I would still be alone with my disease.

Social media is also allowing me to help others. One of my main goals now is to help others so they don’t feel alone with their disease….like I did. Without social media, I probably wouldn’t be successful at it. I could still write a blog but not many people would know about it or read it.

Our disease is often overlooked. It doesn’t get the best research. It doesn’t have tons of money thrown at it. Many people don’t know what IBD is. Social media is helping to change all that. Us IBD Warriors are now coming together and spreading the word. Thanks to social media, we have a voice now and maybe one day a cure.

The Health Activist’s Writers Month Challenge – Day 11 Favorites

Apr11

Write about your favorite social network. Do you love Twitter? Facebook? Pinterest? Why?

I can remember being a kid growing up in the 1980’s. We would spend the day outside playing with our friends and having fun. After school we would come home and actually do homework. If we behaved we got to watch about an hour or two of television before going to bed. Things were simple and fun.

Now, I can’t imagine not having a computer and on top of that, not having social media. After I boot up my computer and checking emails, the first sites I go to are social media. If I have a question or problem, I no longer Google them, but go to a group online and ask away.

But what is my favorite? Honestly I don’t know. I spend most of my time when I am home on Facebook. I have met many people on there and belong to a number of groups…some IBD related, some not. I was thinking of mentioning some of the groups but then I realized that they are closed groups so the people running them might not want me to mention them. So I won’t. But if you have IBD, just do a search and you will find a lot of groups that deal with IBD. I have met so many great people from these groups and they really have helped me to deal with my disease. It is the one thing that was always missing from my life…meeting people with my disease.

Another great thing about Facebook is that it is Real Time. You can chat with people instantly. Not only have I met some great people, but I have talked with them one to one and gotten to know them better. I have gotten to speak to some of my IBD idols and not only have they helped me out but I have been able to help them out also. We can be there to be a pick me up for each other when needed.

Besides Facebook, I use Twitter a lot. Again, I have been lucky to meet a lot of people with IBD with this site. Again, like Facebook, you can talk to someone in real-time. The only drawback is that you are limited to the amount you can say. A tweet has to be no more than 140 characters. That may sound like a lot of letters but believe me, it isn’t. There can also be a lag at times with Twitter so it isn’t always instant.

The last type of social media site I like, but don’t use as often is YouTube. It was the site that helped get me started on my IBD journey. It is where I got inspiration when I was sick. It is where I learned I wasn’t alone. It is where I met Sara, Maggie, Kelly, and many other inspirational people. I myself tried using YouTube to start my blogging journey. I quickly learned that I was a camera person and I can do better by typing out my thoughts.

Now, there are many more sites out there and some of you might like them. That is fine. I am not against sites like Pinterest or Instagram..I just don’t use them much for IBD related things. Many people do use them so my advice is to go out and explore. Don’t just take what I have to say as an end all. Search the internet. Explore around and find sites that are a good fit for you. There are so many different websites out there. Go out there and have some fun. Just don’t forget to come home for dinner 🙂

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/.

Day 25 #NHBPM – How have your goals as a patient / advocate / person evolved?

Nov25

Well, we are in the home stretch on the blogs and this is one that will really make me think. In the beginning of the month I didn’t give much thought to my post, now, I am spending probably too much time on them 🙂 This one will be no different.
When I first started down the IBD road, I didn’t give it much thought. I went through my years of being sick and I never had a goal in mind. I just wanted to feel better and live my life. I didn’t even know too much about the disease. Growing up in the 1980’s the only resource around was the local library and since there wasn’t much written about Crohn’s there wasn’t much to read.

Over time, decades would pass. During the 1990’s, I started feeling a lot better to the point that I went off all medicines. Since I didn’t know much about the disease, I didn’t know that this was a bad idea, and I didn’t see any point in learning more about my disease. I went through life ignorant of what I had.

With the coming of a new century, my life changed. In the 2000’s I started seeing a new GI who wanted me back on meds. This started my downward spiral with medicine. For some reason, I still never really felt the need to learn more about my disease or treatments. Time would go on and living 20 years would come with me still ignorant about my disease. I would go to some symposiums by CCFA and would read things here in there but by now I chose to just play dumb. Why not? I have been getting by without having to do much research.

By 2011, my life with the disease would change, and so would my goals. My father in law who suffered with UC in his life and had a ostomy bag passed away. This hit me because I looked up to him in my battle with IBD. He was an inspiration in how he lived his life. Second, I went into my biggest flare ever. I started going through depression and felt like my life was going downhill real fast.

I started to feel useless in my battle. After 23 years, I felt it was time. It was time to finally find out just what I am living with. I went online and realized just how much information was out there. My life was about to change. I was no longer going to be a patient, but an advocate. I won’t go into the big details as I have talked about them a number of times already in other posts. You know who I found online to be inspired by, who I learned from and just who could really help me.

After all is said and done, this blog now serves as my sounding board to help others. I have gotten some really good feedback to show that what I stated out to do is working. My main goal now is not educating myself but educating others. I want to let other IBDers know just what options they have with their treatments, how to find a good GI and mainly just let them know that they aren’t alone with their disease.

My Facebook friends list has more IBDers than real friends. Same for my Twitter account. I talk to more people with UC and CD then I have ever. Sometimes I learn some new information from them. Sometimes I help them. As 2012 draws to a close I look at where I have come from and how far I have traveled this year. I went from feeling depressed, lonely and useless to being strong, confident and helping others. I couldn’t have done it without the support of my fellow IBDers.

As for the future, I don’t know what it entails. I want to become more active with CCFA. I will probably work Camp Oasis this summer. Anything else…I don’t know. I guess we will have to wait and see.

Day 15 #NHBPM – Why Healthcare Companies (or healthcare professionals) Should Use Social Media

Nov15

This is an interesting topic because you can look at it from a number of different ways. Do you want to be friends with your doctor on Facebook, or do you just want him/her to see what the community thinks? To what extent should they be using social media for?

I currently go to Mount Sinai in NYC to see my GI doctor. In the past couple of years they have started using a system called MyChart. It is a system where you can have access to your charts and labs but also, and this is the part I love, you can send a message to your doctor and have him/her respond back. I have used this a number of times and it is definitely faster than email. Yes, it isn’t social media, but it is a first step.

So what is social media. Those words get thrown around a lot, but do you know what it is? Wikipedia describes it as the following:

“Social media employ web- and mobile-based technologies to support interactive dialogue and “introduce substantial and pervasive changes to communication between organizations, communities, and individuals.” Social media are social software which mediate human communication. When the technologies are in place, social media is ubiquitously accessible, and enabled by scalable communication techniques. In the year 2012, social media became one of the most powerful sources for news updates through platforms such as Twitter and Facebook.”

Now, should your doctor be accessable on sites like Twitter and Facebook? Remember your doctor is spending a lot of time treating patients in their practice and then probably spend time in the hospital seeing patients or doing procedures. Do you want them to spend less time with patients so they can tweet “Going to stick a scope up a bum..Wow..What a view”? Personally, I don’t mind that I can’t chat with my doctors in chat rooms. It means that they are working and I like that. We shouldn’t be pals or friends with them. The relationship should be kept professional.

Now, what about the practice themselves like a hospital or lab or even your doc’s private practice. Now a days, businesses have Twitter and Facebook accounts to help drive business. I am not against this. It would be nice to be able to get information from these sites instead of trying to call. I remember a couple of years back when I was getting Remicade infusions. There was a big storm the night before and I didn’t know if anyone would be there to administer the medicine. It turns out there wasn’t. I had to rely on the phone though to get this info and getting through was not easy. It would have been nice to just log on to Twitter and see a tweet..”Big storm, nurses snowed in, no infusions today..please reschedule” Not only would this save time in contacting everyone but I would know not to bother trying to get in.

I would love to hear everyone’s thoughts on this topic. I am sure there will be a big debate on this. Please leave a comment and let’s get the discussion rolling.

Day 12 #NHBPM – Advice for Newly Diagnosed Patients

Nov12

Today I am using one of the bonus topics. When I saw this topic I knew I had to write about it. It is one of the reasons I started this blog.

To anyone reading this and are newly diagnosed with either Colitis or Crohn’s Disease, the first advice I can give is….Take A Deep Breath. Your life is about to change forever. You are entering a whole new world. You will have a lot going against you and years of fights to have. So take a deep breath. Relax. Stay calm because you have a very big and caring community behind you to help.

When I was first diagnosed in the 1980’s, I was given some pamphlets to read and sent home from the hospital. I didn’t know what the disease was all about or what was installed for me over the years. Now, there is the internet. In a matter of minutes you can find out all the information you want, see tons of videos, and meet hundreds of people living with the disease.

So, now after you have taken that breath, take another and another. Now sit down and create a journal. Write down your symptoms, your medicine, your diet. This will help you later on in life when you have problems. Try to keep track of every medicine you take and how it helps or doesn’t help you. Keep track of the side effects.

Now that you have done some work, let’s go have some fun. Search the internet. There are so many people out there to help you out. There are a lot of video’s on YouTube to watch. Some are funny, some informational. Some are just video blogs. After you have watched some of the video’s, come on over to Facebook. There are tons of groups with people who have IBD. You will soon find that you are not alone. You will also find that most of these people will be very open to accept you in.

Now that you have had the time to see what the disease has to offer you, you have to take a mental step. You have to toughen up. This disease is a disgusting and descriptive disease. Many people with it are very open and there is a lot of disgusting things. If you are squeamish and don’t like dirty things…well, you will have to change how you are. You yourself will go through some tough disgusting times and it will be easier if you are ready for it mentally.

After all of this your head is probably spinning. There is so much information to take in. You are probably wondering if you will ever have a normal life again. I am happy to tell you that yes, you can. I myself hold down a job, I have gotten married, and I live life to its fullest. Some people do have severe complications and find it hard to live a normal life. But nothing says that this is going to happen to you. Stay strong and stay positive.

The next big thing you have to do is find yourself a really good gastroenterologist. If you are under 18, you will need a pediatric gastro and in a couple of years find a regular GI. It can take years until you find a good doctor. Don’t despair. They are out there. I myself have had at least 6 GI’s before I found a really great one.

So now, do you feel better? You may have a disease but know the disease does not have you. If you ever have a question or problem, there is always someone out there to help you out. And if you want, just ask me. I will do whatever I can to help you because my motto for this disease is “You are never alone”.

Day 10 – #NHBPM Should people post about their (or loved ones) health on Facebook?

Nov10

Facebook. One of probably the most recognizable name in the 21st Century. Whether you are on it for the games, meeting people, or finding answers. It has been used to help start revolutions in countries around the world. For some it is a place to post pictures of their pets and loved ones. And then there are people who want nothing to do with it and never use it. There are even some of us that get fed up with the changes and vow never to use it again…but most of us return.

For many of us with chronic illnesses, we use Facebook to connect with other people in our situation. I myself belong to at least 10 different IBD related groups and pages. I probably have more IBD online friends on Facebook than I do of my close friends and family.

Of course, when I am in the groups and pages I talk to other people and post about issues I have with my CD. Sometimes I answer other people’s questions. But one big topic that a lot of people in the real world ask…is should you be writing about your health on Facebook. I am reminded of a time when a fellow IBDer, Alyssa from www.loveformutantguts.com, was in the hospital and her family didn’t want her to post pictures of herself because they supposedly weren’t flattering to her. I remember doing a blog supporting her decision.

So why do I support her decision and where do I stand on the topic question? Well, first let me say your body is your body and you have the right to do or say what you want to and about it. If you are willing to share your health to other people and open yourself up to strangers..then that is your decision. Everyone has the tools to leave the site if they don’t want to read about it. Do I support Alyssa on posting the picture…most definetely. If that is what she wants to do..then so be it. Also, I think everyone with IBD should learn and see the bad side of the disease besides the good. Nothing should be hidden. I myself have learned to really open up and share a lot about my health online, not just on Facebook. I am a little more cautious on Facebook because I do have friends and family that maybe doesn’t want to hear or see some things about my disease. I try to censor my public posts so as not to offend anyone. But if I am in a private room (which most IBD rooms are) then I feel I can open up as we all understand the issues.

But what about loved ones? Well, are we talking about just mentioning our loved ones or are you an advocate for one. If my wife is sick, I won’t go on rants about it. I don’t talk about any of her problems because it isn’t my place. If she has some horrible disease, it is up to her to say what she wants about it, not me. Just like I wouldn’t want her to constantly talk about me without me knowing about it. But…if your and advocate for someone…that is a whole other story. I see so many people who are parents of little kids with IBD and they talk up a storm. But should they? If the kids are real young, shouldn’t they have some privacy rights? I think this is a very big topic. I am happy that there are parents out there looking to learn and share in the lives of their children and really learn about their disease. I sometimes wish my parents had done that when I was young..hell, I wish I had learned more when I was young. I was kind of lucky as there was no internet when I was growing up so my parents couldn’t tell the whole world about me. But if there was would I have wanted them to go online and talk about me and my disease without me knowing it. Probably not. I would feel a little violated. At the same time though, I know they would have meant well and were trying to find answers to help me.

Looking back at all of this..I realize I haven’t really answered the question. I think that is because I am torn on the answer. For myself..if I am comfortable with talking about my health and want to open up..then yes I should and people should just be happy with my decision. As for posting about others..I think there is a big gray area and I don’t know. Part of me says yes and part of me says no. I guess it is how they post and where they post about their loved ones. If they are in a private room where everyone is in the same boat and can really offer help and advice..I guess that is ok. Should they do public posts for everyone to see…maybe not.

Day 6 – #NHBPM – News Style Post

Nov6

Since the explosion of the world wide web, many people have turned to going online to look for help for problems. For many people with IBD, going to a doctor doesn’t always help. They treat the physical problems, sometimes, and very rarely treat the mental problems. Because of the lack of a bedside manner, patients with IBD look for treatment online in the form of forums, social medias and medical based sites.

One new site designed to help those with many illnesses, including IBD is http://www.meddik.com. This is a new site which just came on the scene. It was developed by 2 medical students, one of which has a relative with IBD. The site is a user based site but also carries links to medical articles. The design behind the site is that you can research not just the inner workings of your disease but get first hand help from people who also suffer from the same.

Another site, with a heavier user base is http://www.crohnology.com. This site is made so that you can connect with people who not only have your disease but live near you. You can also ask questions to everyone on the site. You can look up people taking the same meds as you or have the same side effects or even symptoms.

If you are looking for an upbeat site with a dose of comedy, turn to http://www.ihaveuc.com. Adam has UC and treats his disease with comedy. He believes that laughter heals. He also has on his site a place to post and answer questions from other IBDers. Adam also post informative information about the disease and the treatments used.

If you’re looking for a feminine side to IBD, there is no shortage of that either. Sara at http://www.inflamed-and-untamed.com is probably the most recognizable face for IBD. She talks about a lot of personal dealings with Crohn’s and having a J-Pouch. She has become an inspiration to so many people and when she is ill, she in overwhelmed with well wishers.

Another person who is big on helping others is Kelly. She has a page on Facebook called I-Have-A-Bad-Tummy-With-An-Optimistic-Mind-Chronic-Illness-Support. Kelly is the face of being brave and strong with IBD as she has been very sick this year but still manages to come online to help others. She is yet another big inspiration to many.

If you have an ostomy and love videos then check out Maggie at www,youtube.com/LetsTalkIBD. She shows everyone that just because you don’t have part or all of your intestines doesn’t mean you can’t live life. She shows that you can do whatever you want to do, whether it is swimming in a bikini or going to college. Your life doesn’t stop just because you wear a bag on your side. In fact she shows just how life is just starting after surgery.

Are you athletic? Do you have IBD? Well, your life isn’t over. Brian at http://www.intenseintestines and Heidi from http://www.ostomyoutdoors.com both show that just because you have a disease doesn’t mean you can’t enjoy exercise. Whether it is hiking, running or biking..you can do it all.

With so much help out there online doctors need to step up their game. They can’t give the advice that any of these sites can offer. Most doctors don’t have enough time to spend with their patients to find out what is going on in their minds. It is no wonder why everyone turns to the internet now.

The Men of IBD

Jul6

Today is Friday. So that means it is my time for suggestions on who to follow and read. This week, I want to highlight the men of IBD. There are so many good men out there advocating that I couldn’t even begin to name them all. I will tell you of some of them and if you know of anymore or want them highlighted in the future, drop me a line at aguywithcrohns@gmail.com and I will post them in a future post. So without further delay here is my list of The Men of IBD.

http://www.ihaveuc.com/ – Meet Adam. He has written books. He has YouTube videos. He has a website dedicated to helping people with UC. He also has Ulcerative Colitis.

http://www.crohnsdiseasesn.com/ – This site is run by a number of moderators but was started by Jason Leitman. He also has a group by the same name on Facebook. Check it out.

http://www.intenseintestines.com/ – This site was started by Brian Phillip Greenberg. He has IBD and doesn’t let it slow him down. He runs, hikes, climbs..he does it all. He is an inspiration for all of us. He shows us that even though we have a chronic disease, we don’t have to let it run our lives.

http://crohnology.com/ – This site was started by Sean Ahrens. This is a great site to help meet people with IBD in your area.

http://www.crohnsdiseasesupport.co.uk/# – This site is run by Peter Buckers. This website shows that IBD is not just a local disease but worldwide. He also runs a great Facebook page called Bowel Disease One Global Family.

http://storify.com/SCDPat – Pat Leger. You see him all over. He is on Facebook and Twitter. If you see him, say hi..he is such a great guy. He is also known for being very successful on the SCD diet.

http://beingapatient.blogspot.com/ – Michael Seres aka the guy with the intestinal transplant. Read what it was like to go through intestinal failure and a transplant while also fighting IBD.

http://www.foulbowel.com/ – John Bradley. If you haven’t read his book yet, read it. It is about his experience with IBD.

http://ucvlog.com/ – I was on the fence to include this one today, but I will. It is a great site, but I was on the fence because 2 people run it, one of which is a woman. But the other is a great guy – Dennis Frohlich. Nadia – You are wonderful too 🙂 Both have IBD and make some great video’s.

Well, that is my list for today. Again, if I missed anyone let me know. If you have a website, send me a link to check out. Have a great weekend and hopefully it is a pain-free one.