Let’s all help fellow IBD Advocate Dennis Frohlich

Nov19

Recently I had the pleasure to do an interview with Dennis from www.UCVlog.com for his dissertation. He is doing a research study on how the online inflammatory bowel disease community is created and maintained and how viewers and readers use these websites. It was very interesting to talk to another guy with IBD and hear some of his views also. As part of the interview, he asked me to share his request and ask people to fill out a survey for him. Here is his request:

“Hello everybody!

I am a graduate student at the University of Florida and also somebody with ulcerative colitis. I maintain the United Colon Vlog (http://UCVlog.com), which you may be familiar with.

For my dissertation, I’m conducting a research study on how the online inflammatory bowel disease community is created and maintained and how viewers and readers like you use these websites. I’m looking for people 18 or older to complete a short survey about your activity in the online community.

As long as you have Crohn’s disease or ulcerative colitis you are eligible to participate; it doesn’t matter how long you’ve had IBD or how bad your disease is. If your IBD is indeterminate, or you are still going through diagnostic tests, you can still participate! And whether or not you’ve had surgery, you are still eligible.

The survey will take approximately 10-15 minutes. Please click the link below to access the survey. Thanks for your invaluable help!

https://ufl.qualtrics.com/SE/?SID=SV_cAqPW1khdSsFuC1

If you have any questions at all, please let me know.

Sincerely,

Dennis Frohlich

University of Florida

dennis.frohlich@ufl.edu”

If you haven’t checked out his site yet, please go look at it. He runs the site with Nadia who I have also talked with online and she is a wonderful person also. The two of them do some great work together.

I stumbled upon UCVlog early on in my research about IBD. When I first starting heading down the “advocacy” road, UCVlog was one of the first sites I found. I found their openness to the diseases refreshing and empowering. Dennis was also one of the first guys I saw advocating for IBD and this became a big inspiration for me to jump in and start advocating. As I have been saying for 2 years now…we need more guys to speak up.

Thank you Dennis for letting me be part of your research. With so much bad news about this disease going around lately (way too many deaths), it was nice to talk to someone who is inspiring and helped renew my faith that we can educate and one day maybe find a cure.

The Health Activist’s Writers Month Challenge – Day 9 Caregiving

Apr9

Patients, what advice or tips do you have for caregivers out there – professional or otherwise!

This is a good topic. It is so good that it is a repeat of one I did last year. So, I will pretty much repeat what I said in that post. Also, keep in mind that I am focusing on caregiving to someone with IBD.

First, and this is one of the most important things a caregiver needs to remember, is that the person they are taking care of has the disease, not the caregiver. The patient is most likely scared because they have an incurable illness. What they need most of all is love, affection and some sympathy. They are probably in constant pain and they might not ever feel “normal” again. It is your job to help them get back to normal as best as THEY can.

Second, listen to your patient. Don’t ever assume you know what they are going through or what they are feeling. If they say they have pain, believe them. Sometimes they may seem alright, but mos of the time there is pain within their gut. Think about how you feel when you have a sunburn. Well, Crohn’s is like a sunburn on the inside of the intestines and it is constantly being touched.

Next, don’t try to force feed them. An appetite is a tricky thing for someone with IBD. One day they can be nauseous and not want to eat. Other days, they will want to pig out. Some of this is caused by the disease, some of it caused by the meds. Also, they are going to find that there are a bunch of foods that don’t agree with them. If they want to try a specific diet, let them. If they say they can’t eat a certain food….believe them. Don’t try to make them eat something because it is healthy. Not everything healthy is good for someone with IBD.

Your patient is not going to like the medications that they are on. If they are taking Prednisone, there is a good chance that they will get some depression. You should know right now, they will gain weight. Their face will swell up and this is called a “Moon Face”. Just let them know that it is normal, they are still beautiful and handsome, and that it is temporary. One day they will come off the steroid and their weight will come down. Now, sometimes if they are in a flare, they might lose weight. Try to give them some supplemental foods like Ensure to help maintain their weight. Don’t ever mention how skinny they look. They know they are losing weight and don’t want to be reminded of it.

My last advice I can give is never ever ever say they are sick. They have a chronic illness that will be with them their whole life. They know how they feel and they want to try to look and act normal. To them, it is something that is now part of their life. To them, being sick is like catching a cold or a flu. Having IBD doesn’t mean your life ends…so why should they think they are sick. Treat them as you would treat anyone else. Play with them. Talk with them. Give them hugs and kisses. Let them know that their life will move along and that they have nothing to be ashamed of.

And if ever you have a question, don’t be afraid to ask. Ask a doctor. Ask the person you are giving care to. You can ask me. There is also a huge community or people with their condition online. Turn on your computer and look for them. They will accept you and your patient into their family with no questions asked.

You are now about to embark on a great journey. Enjoy the ride.

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.

My First Interview

Jul9

Recently I was contacted by the good people over at WEGO Health. They wanted to do a little interview with me to help get my message out. In exchange, I would help get their message out.

First off, here is the interview.. http://blog.wegohealth.com/2012/07/09/featuring-health-activists-jeffrey-of-a-guy-with-crohns/

For anyone that doesn’t know who they are, WEGO Health (www.wegohealth.com) is a site dedicated to bringing awareness to just about any health issue. They do articles on different topics, highlight an illness for a month, hold Twitter chats and help bring people with same the same illnesses together.

Now, for anyone that knows me, knows I won’t advocate for something I don’t believe in. I am true to my word and beliefs. I wouldn’t spread WEGO Health’s words if I didn’t believe in them. So, check them out and maybe you can find some answers to some problems you might be having.

I have to say, I was so happy to be asked to do this interview. One, I love getting the guy’s view of IBD out there and this is a big step in that direction. Second, it is showing me that people are seeing my posts and like what I have to say. A big reason I liked the interview, is I got to publicly thank some of the people who inspired me to get on with my life and to speak up. Thank you Sara Ringer, Kelly Frick, Jackie Zimmerman, Charis Kirk and Maggie Baldwin for setting me down this road.

Of course there are so many others that have been an inspiration to me and that is why I do the Follow Friday thingy here. It is my way of saying thank you. I can’t go and list everyone because the list would just keep going. Every week I seem to meet inspiration people and if you read my blog, you would see that.

Now, I don’t do what I am doing for fame. I hate being in the spotlight. I do it so anyone with IBD would know that they aren’t alone. I grew up all alone with this unknown disease. In the 80’s and 90’s before there was the internet, it was hard to now only learn about Crohn’s Disease but to meet people with it. Now, I can meet someone new everyday. And hopefully, no one has to feel like I did. That is why I do what I do. And if you ever feel alone, just look me up and say Hi.

My biggest thank you I have saved for last. It is to everyone that reads my blogs and Tweets with me and is there to keep me moving. It is to all the people who are there to pick me up when I’m down. It’s to everyone that leaves me comments saying thank you. Mainly, it is to YOU, the reader. Thank You.

IBD and Sensitivity

Jun9

Over the weekend my eyes were opened to just how insensitive people can be, especially to someone with IBD. Most names will be left out so as not to totally offend the parties involved in the incident.

Many of you might read Crohn’s Advocate and recently read an article in there about Mike McCready who is the lead guitarist for Pearl Jam. The article talks about his struggles with Crohn’s Disease and how he turned it into a positive experience. I found this article to be great and I found a new respect for him and Pearl Jam. So, on Friday night, while on Facebook, I saw a link from The Great Bowel Movement directing everyone to Like a comment made by another activist to a radio DJ in Chicago. Turns out this DJ made a comment (I believe on air) about how Mike McCready should have stayed silent about his disease and referenced the article on their Facebook page.

Well, that was enough to set me off. Attack a fellow IBDer from one of my favorite bands of all time. Gloves were off. The original activist that heard the comment was heading out and couldn’t continue to fight this battle, so I picked up the baton and ran like the wind. I must have posted in 10 different groups on Facebook with a link and description of what happened. I then went to Twitter and Tumblr and again posted. I also Twitted Mike himself to let him know what happened. I don’t know if he read the Tweet.

As of 7:30 pm on Saturday there are 91 comments on the Facebook page from many IBDers. Everyone was attacking the DJ. Eventually the DJ tried to apologize, but he compared what we go through with his withdrawal from drugs. Needless to say that drew more irate comments.

I truly couldn’t believe how many people flocked to Mike’s defense. It brought tears to my eyes that I could not only rally so many people to help out Mike but that so many people could be so open about their disease.

People…Crohn’s and Colitis is a serious disease. It isn’t just a stomach flu or some slight tummy ache. There is a lot going on within the body with these diseases. When will people realize that they are serious diseases. If your going to talk about any disease, joking or not, make sure you know about it. Don’t be ignorant.

Mike McCready…if you are reading this (I know your not but I can dream), you have a community behind you. You have done so much for us and we have your back. Thank you for all that you have done, all the money you have raised, and blessing us with your sweet sound that your fingers make. Keep up the great work and help stamp out not only IBD but stupidity and insensitivity.

IBD Advocacy….It’s Not Just For Women

May31

I have had Crohn’s for 23 years now and never in all that time have I thought I would want to advocate for the disease. In fact, I kind of denied that I even had it. I didn’t want to face it.

Earlier this year in January I was at the lowest point with this damn disease. I was going to the bathroom 30 times a day and having a lot of pain. Nothing, not even my meds, was helping. It was then that I realized that I had to face this disease head on and acknowledge it.

I went online to look for help for the first time in my 23 years. I thought I was so bad that I was going to have to have my intestines removed so I started researching ostomies. And that is when I found Maggie on YouTube. From there, I saw she watched some videos which I eventually did also…and that is how I found Sara (inflammed and untammed). Doing some more research led me to Kelly (I Have a Bad Tummy). All 3 women have a following and have different issues with IBD. They have a strong voice for advocacy and made me want to reach out to others for support. I then found a number of other strong women who advocate (Full Frontal Ostomy, The Great Bowel Movement, Blood Poop and Tears) and many other sites. One thing I started to notice is that every one of these people were women. Where are all the guys?

Within my search for support I have found some guys out there. Brian Greenberg of Intense Intestines is one. There is Jason from the Crohns Disease Support Network. Both are big advocators within the community. Another person who is a little low key but has a following is Patrick Leger aka SCDPat. He is known for spreading the good word of the Specific Carb Diet. I recently spoke with him on Twitter to get some insight on building a following. He gave me some great advice.

One of the things I mentioned was that I wanted to form a “Band of Brothers” Recently a bunch of the women I mentioned went to Chicago to advocate and they called themselves the Girls with Guts (or something like that). I thought that was great. They had always been separate..but banded together they can do a lot more.

So here I am. There aren’t many guys out there advocating and alone, we are just one voice. So I am reaching out. GUYS….if your reading this, help us out. I would love to get a group together to advocate. Patrick suggested “Crohnie Boys” but I don’t want to exclude our other IBD brothers. If you want to help raise awareness please let me know. Let’s get a group together. Together we can be powerful.

IBD Advocacy. It’s not just for women. Let’s show them how us guys do it. Let’s speak up and be heard.