IBD, Transgenders and the Bathroom Laws

May10

With all this talk about transgender people using bathrooms I can’t help but think just how crazy this all is. We have so many problems in this world and this is what people are wasting their time fighting about. The more I hear about it the madder I get because truthfully, I don’t care. If a person feels like they were born the wrong gender and they are trying to correct it, why should we stop them?

Then I really started thinking about this and how it relates to IBD. I am sure many of you with IBD have been in this situation and will relate. You go into a restaurant or store and they have gender specific bathrooms but they are single use. Your gender is taken and you have to go now. There is no holding it. So what do you do, you go into the other gender’s bathroom. Many times we don’t think about it, we just do it. We don’t care because it is that or we are shitting our pants.

Now, times are changing and certain states are passing laws that say you are not allowed to use the other gender’s bathroom. This is aimed at keeping trans gender people who haven’t had the reassignment surgery from using the inappropriate (in the government’s eye, not mine) bathroom. But really, with these laws, we are all affected also.

What this means is if someone sees you coming out of the wrong bathroom in say North Carolina, you can face a fine or being arrested. All because you had to do something that is totally normal and natural.

So what does this mean to you. It means it is time for us to start speaking up for civil rights, not just for us or trans gender people, but for everyone. When a law is passed, it doesn’t just affect the people it is made for. There are always other people affected. Now, with the bathroom laws in the spotlight, the IBD is becoming affected even though we aren’t being attacked.

Whether you believe in people being transgender or not (that is another debate for another time), we have to start speaking up for our community. Of course the easiest way to speak up is to write your senators and let them know to leave the bathrooms alone. As for the states that already have these laws in place, you can boycott them. Don’t visit the states. Don’t buy anything made in those states. And spread the word online.

Hopefully one day we can live in a world that is tolerant of everyone. Personally I am just tired of all the fighting and intolerance.

bathroom

Meet Dr. Frank J Sileo

May3

In an effort to switch things up and get you, my readers, more involved, I have brought in a great person to hopefully shake things up here.

I want to introduce Dr. Frank J Sileo.

Frank

Dr. Frank J. Sileo is a New Jersey licensed psychologist and is the Founder and Executive Director of The Center for Psychological Enhancement, LLC located in Ridgewood, New Jersey. He works with children, adolescents and adults. He received his Doctorate in psychology from Fordham University in New York City. He received his Master of Science degree from Fordham University and his Bachelor’s degree from Iona College in New Rochelle, New York. Dr. Sileo has been in private practice in Ridgewood, New Jersey since 1995. Since 2010, Dr. Sileo has been consistently voted one of New Jersey’s Favorite Kids’ Docs by readers of New Jersey Family magazine.

Dr. Sileo is an award winning author and an active public speaker. He is the author of five, soon to be seven children’s picture books: Toilet Paper Flowers: A Story for Children about Crohn’s Disease, Hold the Cheese Please! A Story for Children about Lactose Intolerance, Bug Bites and Campfires: A Story for Kids about Homesickness, Sally Sore Loser: A Story about Winning and Losing and Don’t Put Yourself Down in Circus Town: A Story about Self-Confidence. Sally Sore Loser is the recipient of the Gold Medal Award from the prestigious Mom’s Choice Award. His sixth children’s book, to be released in February 2017 is on teaching mindfulness to kids. His seventh children’s book on a type of bullying will be released in the fall of 2017. He has written extensive general interest articles and has been quoted numerous times in various local and national newspapers, magazines, podcasts, websites, radio and television.

Dr. Sileo will be posting on here from time to time. You may be wondering what makes him qualified to talk to you about IBD. Well, that is easy to answer. He is a Crohnie. He has also on the board of CCFA in NJ and nationally. He speaks across the country for CCFA on the psychological effects of IBD on patients and caregivers.

Let’s welcome Dr Frank Sileo aboard and feel free to leave a comment if you want him to discuss anything specific.

Early Resolutions for the New Year

Dec4

This week is IBD Awareness Week. I haven’t done much or even been on this blog for a long time. But, I wanted to write something up for this week and there is something that has been on my mind.

Part of living with IBD is that you can’t always do what you want to in life. Sometimes the pain and the constant bathroom trips stop you from doing things. Well, for me that is going to change.

Lately I have been hearing the song I Lived by OneRepublic a lot. Part of the chorus has really stuck in my head. It is “I, I did it all. I, I did it all.
I owned every second that this world could give. I saw so many places, the things that I did. With every broken bone, I swear I lived.”

I thought back on my life so far. I have done a lot and have traveled to many places, but I really haven’t lived life or owned every second. This actually bothered me when I thought about it. I thought why can’t I? Just because I have a disease doesn’t mean I shouldn’t live life. So, going forward I refuse to let this disease stop me from doing anything. It might slow me down some times but it won’t stop me.

I posted on my Facebook account a list of things I want to accomplish within the next year. I want to share that list again here.

Finish school with a B average (I can’t get an A anymore but I can work on the B)
Find a job that I enjoy doing (We should all enjoy the work we do)
Pass 2 IT certificates (This goes hand in hand with 1 & 2)
Get in shape
Lose weight
Make a new friend (We can never have too many friends)
Travel somewhere I have never been before
Read at least 5 books (Knowledge is power)
Learn to ski (I have wanted to do this for over 20 years. Anyone want to teach me?)
Bring IBD awareness to more people

To start of my list, here is some information from The Intense Intestines home page.

IBD FACTS

It’s estimated that around 1.4 million people are affected by an IBD condition in the United States alone.

In the U.S. about 100-200 people per 100,000 are affected with ulcerative colitis.

And 30-100 people per 100,000 are affected by Crohn’s disease.

Crohn’s can affect all areas of the digestive tract. The digestive tracts covers the following areas

Mouth, Esophagus, Stomach, Small Intestine, Large Intestines, Rectum and Anus.

Ulcerative colitis just affects the following areas:

Colon, Rectum, and Anus.

What Causes Inflammatory Bowel Disease:

Unfortunately, no one knows exactly what causes IBD. All we know is that something in your body causes your immune system to overreact. Different stimuli may be the cause of IBD in different people. For instance it might be a kind of bacteria, something in your own intestines or even your family history.

In fact scientists now believe it is a combination of all these factors. if youhave IBD, you may have inherited a unique gene in your immune system. Then something happened to trigger that gene, causing the overreaction, which then cause the inflammation in a patients intestines.

Who Gets IBD:

IBD can be found in both men and women. it may run in families, in fact 20% of people diagnosed with the disease have a blood relative with some form of IBD.

It is usually diagnosed between the ages of 20-30, all though people of all ages can suffer from an IBD. People of Jewish heritage have a greater rush of developing the disease while people of African American heritage have the least amount of risk.

Symptoms:

Abdominal pain and diarrhea are the most common symptoms of IBD. Other symptoms include rectal bleeding, weight loss, arthritis, skin problems, inflammation of the eyes and fever. The range of severity of symptoms can vary. A diagnosis of IBD may involve blood tests, stool tests, upper GI, colonoscopy, sigmoidoscopy, or biopsy.

IBD-Facts-symptoms-awareness-week-13

Beyond the Bathroom

Dec1

As many of you might know by now, this is IBD Awareness Week. What you also might not know is that I recently joined the Board of Directors for The Intense Intestines Foundation.

This week, the IIF rolled out a new contest/campaign. It is called the Beyond the Bathroom. As you can tell from the name, we are trying to show that IBD is more than a pooping disease and there is so much more to it then just going to the bathroom.

I am now going to ask a favor. Please go to http://www.intenseintestines.org/beyondthebathroom/ and check out the contest. After you read about it, please submit your picture but most of all, please, if you can, send a donation. The IIF needs your support. They need it not for themselves, but for the people they support. They currently have a scholarship that they give out every quarter. Real soon, they will be coming out with a bill assistance program. These programs can’t survive without the support of the community.

To show you what the Beyond the Bathroom is, it is very simple. On their site, you can download a page to print out and you just write in a symptom you have that isn’t related to the bathroom. See my picture below.

IBD Workshop on Nov 8th 2014

Oct28

Come one come all. If you are in the Southern Connecticut area on November 8th, there is a free IBD workshop being help by my good friends at The Intense Intestines Foundation.

http://www.intenseintestines.org/ibdworkshop/

Intense Intestines Crohn’s & Colitis Workshop

The IIF team is excited to host our first Crohn’s & Colitis Workshop at Equinox of Greenwich on Saturday, November 8th. We will continue our mission to help as many patients with Crohn’s disease, ulcerative colitis and ostomies.

Where: Equinox Club of Greenwich, 16 Old Track Road, Greenwich, CT 06830

Date: Saturday, November 8th

Time: 1:00pm – 3:30pm

Cost: Free to first 50 participants (RSVP required. Reserve ticket by below)

During the first half of the workshop, our panel will cover a wide ranges of topics: pain management, healthy habits, living with IBD, surgeries options, the mental battle with IBD, and much more.

The second half of the workshop will feature a Q&A session. This will be a time for patients and their loved ones to engage with our knowledgeable speakers and learn more about Crohn’s disease, ulcerative colitis, and ostomies.

The panel is made up of an extraordinary group of people who know how difficult living with these diseases can be:

Dr. Freitas: Surgeon at Colon and Rectal Surgery Stamford and Stamford Hospital

Brian Greenberg: Founder and President of the Intense Intestines Foundation

Bob Baker: Ulcerative colitis patient and colon cancer survivor

Jessica Grossman: Founder of Uncover Ostomy

Join us for this free workshop for the Crohn’s disease, ulcerative colitis and ostomy communities. You can register below.

We look forward to seeing you there!

Lyfebulb Social Club

Jun22

This past week I was lucky to have been invited to Lyfebulb’s Social Club. It was a cocktail party in Rockefeller Center and brought together guests to connect and learn about emerging and personalized therapies in IBD.

For anyone that doesn’t know what Lyfebulb is, they are an organization dedicated to helping people achieve their optimal lifestyle by addressing general and chronic health concerns. The founder of the company, Dr. Karin Hehenberger was there and started this company to help connect people with chronic illnesses. Their main focus had been on diabetes, but now they are moving on to include people with IBD.

The night featured Dr. Neville Bamji, board-certified gastroenterologist and Clinical Instructor of Medicine at The Mount Sinai Hospital, who shared insights to what could be coming in new therapies to help manage the diseases. Michael Fenterstock spoke to the crowd as the patient representative for the night, discussing his personal account of living with IBD, including the struggles and the successes.

The event is a part of Lyfebulb’s Social Club series, a monthly cocktail parties focused on various chronic diseases. The offline extension to Lyfebulb’s online platform, the Social Club brings together thought leaders, patients, experts and renowned professional, in an informative and relaxed environment.

Lyfebulb is fairly new to the scene and this was their third get together. They have many more things planned for the future including a radio station where people can call up to talk about their disease.

Many of you might be thinking that this sounds fun and exciting and how do you sign up for this. For starters, you can check out their website here. Right now they are based in NYC and I believe only holding events there. For me, I got lucky to have found this group…or I should say they found me. I had gotten an email from someone from a PR firm that works with them inviting me to this party. When I asked how she found me I was told that she found my blog online. I was so happy to know that my blog was very easy to find.

I think Lyfebulb has some great ideas. I met Dr. Hehenberger at the party and she really is an amazing woman. She has so many great ideas on how to bring together the chronic disease community. I know many of us in the IBD community tend to just talk with others in it, but as you know, we usually suffer from more than just one disease. A company like this will bring many of the communities together as one so there is so much more opportunities to share your stories and hear others. As well, we will all be able to find out new treatments that we might not know exists which benefit everyone.

I really want to thank Lyfebulb to letting me join their community and I look forward to going to more events with them. Hopefully, down the road, I will have more information on treatments and different ways to help everyone.

Follow up to “Crohn’s Disease in Teens Jumps 300% in 10 Years Fulled by Junk Food”

Jun20

All our complaints over Dr Mitton’s comments made a difference. Below is a statement she put out today.

20th June 2014

First and foremost I would like to apologise for the distress that I have caused by what was shown on the BBC to all Crohn’s disease and ulcerative colitis patients. I was unable to respond more quickly to the reactions to this report due to very heavy clinical commitments. I feel that what I said and the subsequent coverage has been misinterpreted and I would like to clarify this now.

I said that Crohn’s disease occurs in those who are genetically susceptible and that the unexplained recent increase in numbers diagnosed amongst young people in the UK is likely to be related to life style. I did mention pre diagnosis diet and multiple courses of antibiotics as possible factors preceding the development of overt disease in some cases. I did not say that junk food or frequent courses of antibiotics CAUSE Crohn’s disease. I am very aware there are many patients with IBD who eat a very healthy and nutritious diet and have always done so before their diagnosis.

However, since the initial report on 18th of June there have been subsequent newspaper and television reports that focus on the assumption that Crohn’s Disease seems to be “caused” by junk food and multiple antibiotics. This is not my belief and is a distortion.

I did not mean to imply any element of self-infliction and I am appalled to think this could set back public perception of IBD or that sufferers might be blamed for their own pain and misfortune.

I would like to sincerely apologise again for the distress that my comments have caused.

Dr Sally Mitton
Consultant Paediatric Gastroenterologist

Crohn’s Disease in Teens Jumps 300% in 10 Years Fulled by Junk Food

Jun18

Now that I have your attention…the above headline came out today all over the internet. It was from The Telegraph, a British paper. The article can be found here – http://www.telegraph.co.uk/science/science-news/10908884/Crohns-disease-in-teens-jumps-300-per-cent-in-10-years-fuelled-by-junk-food.html.

What I wish, is that people would really think before they speak…or type. First, the claim is that antibiotics used early in life is causing the IBD. Coupled with that is the intake of “junk food”. My favorite quote comes from a Dr. Sally Mitton. She says, “Definitely, if you have a lot of junk food before your diagnosis it actually makes it more likely that you will develop Crohn’s Disease”. Really? REALLY? This is by far one of the worst statements I have heard yet on Crohn’s. If I eat bad right before a diagnosis then that was the cause. So by her reasoning, if you are petting a dog and suddenly have a heart attack, then the petting of the dog caused the heart attack.

I really don’t know how someone is allowed to put this in writing without any sort of empirical data to back it up. So let’s look at my life. Before diagnosis I hadn’t really had any antibiotics so that isn’t what killed my gut. As far as junk food, I did eat junk food but I also ate healthy food. And what about all the people who had IBD before mass-produced sugar products? What is the reason they got IBD.

Oh wait, it’s coming back to me know. IBD is genetic and hereditary. It is something that gets passed down and is in our DNA. I guess that well-educated doctor didn’t read those articles.

Dr Sally Mitton goes on to say that people can manage their disease by altering their diet. Um…again not true. Yes, food can play a role for many people. But what about people who can’t touch food at all and have to go on TPN? As we know, there is no one diet for IBD. Everyone is different.

I swear, every time I think we are making progress with these diseases, something comes out to push us back. How many people are going to read this article and believe it. Now we are going to have to hear people say.. “Stop eating junk food and you will cure yourself”. Ugh. Ignorance. I can’t stand it.

As far as the antibiotics go, does she realize that antibiotics are also a treatment for CD? Hmmm. It can cause it and then cure it. Amazing.

Honestly I don’t know what is worse. A doctor that believes all this, a reporter that will write the article or a paper that will print it.

IBD Support

May30

If you haven’t already, head on over to The Crohn’s Forum to check out my latest post for them about IBD Support. It can be found here.

IIF-Never-Stay-Quiet

Now that you have come back, let me update you a little more. Since the climb, I have done even more support for the IIF. This past Wednesday, the IIF had their first support/meetup group. I had helped in organizing it and getting it together. Sadly there were only 3 IBDers that showed up, but it was a start. And I do have to say that the people who did come were amazing.

One girl who came was 15 but looked 12. I thought this group would be a little out of her league when I first saw her, but after she opened her mouth I was amazed. Now, I feel that when you run a support group, you should be the inspirational person. You should be the one to install confidence in others and help guide them on their journey. However, I felt humbled when this girl spoke. She was the bravest 15 yr old I have ever met and had the best outcome on life. She clearly was not going to let IBD stop her from living.

Another person that was there was just the opposite. He had never been to a support group before and was still a little new to IBD. He hadn’t really opened up yet about it with others. Thankfully, we all have been there so we were all comforting to him. So much great advice flowed from us that I hope he feels a lot more confidence in living his life with IBD.

The third person that showed up was someone I convinced to come. I met her on the climb and I wanted to have someone who was at a point in their life where they were comfortable with their IBD to really open up. I think her story is definitely a great one and I think she helped the others in understanding this damn disease a little better.

This was the first group. We will be having one every month and I already can’t wait for the next one. Hopefully we will have more people there. I love hearing the different stories and journeys people have taken. If you are in the Northern New Jersey area, and want to attend, let me know. I will give you all the information.

The Inspirational Blogger Award

May12

The Inspirational Blogger Award!

Here are the rules:

Thank and link the amazing person who nominated you
List the rules and display the award
Share seven facts about yourself
Nominate fifteen other amazing blogs and remember to comment on their blogs to let them know you’ve nominated them. (provide a link to your post)
This rule is optional you can proudly display the award logo anywhere on your blog e.g. on your sidebar and also follow the blogger that nominated you.

So first, a very big thank you to Meranda Roben O’Hara whose blog can be found here. It is nice to be recognized by the community. It even nicer to know that my blog is helping someone. Meranda, I love your blog and find you just as inspirational. Keep up the great work you are doing.

Seven Facts About Me:

I was afraid of dogs before I got my little Sable. She was only 4 lbs when we got her. She was very scared of us and wouldn’t interact much in the beginning. When she finally warmed up to us, she got in play stance and barked at me. I got scared cause I thought she was angry and wanted to attack me. 4 1/2 years later, she is my little baby and I have no fears of her. She has taught me many things about enjoying life.
I had Crohn’s Disease for about 25 years before I really understood what I had and opened up to others. I went through life pretty ignorant of what I had and just dealt with it. It wasn’t until I went into my worst flare that I decided to go online and do research.
I am very big into Star Trek. I wouldn’t call myself a Trekkie or Trekker, but I know quite a bit about the franchise. I have seen every TV episode and movie, more than once.
I am gluten free. 2 years ago, I went gluten free to help with a flare and have never looked back. It is now part of my life and has become another lifestyle that I preach. You can check out recipes I am posting on my other blog, The Gluten Free Gluttonous Chef.
I have been very lucky to meet some famous IBDers. Sadly, they aren’t celebrities like Mike McCreedy, but are still big within our community. I have gotten to meet Megan of TGBM, Sara from Inflammed and Untammed, Brian from Intense Intestines Foundation , and Frank Garufi Jr of The Crohn’s Colitis Effect, just to name a few.
I am a trained chef. I originally went to school to cook professionally and I have the degree to back it all up. However, I couldn’t take the heat (literally) so I left the kitchen. I do cook at home though and have tons of fun doing it.
I have worked in almost every aspect of the hospitality industry. I have worked in airports, hospitals, nursing homes, restaurants, quick service coffee shops, and hotels. I have been both front of the house (dealing with customers direct) and back of the house (behind the scenes).

My Nominations

My first nominations (and I think she doesn’t like these kind of awards) is Marisa from http://keepingthingsinsideisbadformyhealth.wordpress.com/. Marisa, you are so inspiring to so many people. Even though your advocacy is still young, you have gotten many people to not only listen to your story but open up about their own. I know you still struggle, but that is all part of what makes you inspirational. You speak from the heart and show us not only the good but the bad.
Next is Jacquie from http://gutwrenchingtruthaboutcrohns.wordpress.com/. Her blog is about her adventures with IBD. She talks about the side effects which at some point we all experience but sometimes don’t want to talk about.
Third is Amanda from http://warriorchick32.wordpress.com/. I have gotten to know Amanda a little from our chats on Twitter. Recently she was on a reality show on TLC called America’s Worst Tattoos. Not only does she talk about her life with IBD, but also post’s recipes which always look so delicious.
Fourth is Michelle from http://digestingmythoughts.com/. Michelle talks about what it is like for a young adult to go through this horrible disease of IBD.
Can’t forget my IBD brothers. Fifth is Josh from http://jrobinjrob.wordpress.com/. Reading an IBD blog from a guys point of view is rare. It is always nice to hear it. Josh is always trying to help educate others and I love that.
Next, and I can’t forget her, is Sharon from http://www.ibdjourneys.com. Sharon has been dealing with the negative parts of IBD for way to long. Her site is a place where everyone can come together to talk about their IBD journey.
Another wonderful person is Stacey from http://staceydearest.wordpress.com/. She is another young adult and is from the heart of America. She talks about her life with IBD.
Shari from http://ihaveulcerativecolitis.wordpress.com/ is yet another inspirational person. Her blog is about her life with UC and her stoma Fred.
Another IBD brother I like is Rasheed from http://rasheedclarke.com/ Not only does he show how UC doesn’t have to stop you from doing things but he has also written a book of short stories.
Of course, no list would be complete without mentioning Ryan of http://www.crohnsguy.com/. This guy swam Lake Erie to raise awareness for IBD. Lake Erie….one of the Great Lakes. Just shows you that IBD won’t stop some people.
Next, Mary Claire from http://www.resiliencyspace.com/. Not only has she come along way in dealing with her disease, but she shows just how strong you can be with it (literally).