What Is Wrong With Me??


Have you ever asked yourself this question? You can be sitting there, just trying to think of a word that has slipped your mind and you think what is wrong with me. Or you can be seriously ill, can’t get diagnosed by a competent doctor and again, you ask the question.

These past couple of months have been very busy. I am sorry I haven’t kept up with this blog. When I last left off, I was in the process of changing GI doctors. Since then, I have seen the new GI, been in a bad flare, and have had knee pains from arthritis every day. My body feels like it is falling apart and I have started to ask, what is wrong with me? I used to be able to do so much.

So much is happening in my life and I don’t even know where to start. For my Crohn’s, around February or March (can’t remember when) I went off the gluten free diet. Since then I have slowly felt sick again, entering into a flare. When I saw the new GI, he wanted to try some other meds, including Prednisone. I kind of talked him out of it as I don’t react well to it. He allowed me to just take Immodium. Hopes were that this would slow the diarrhea, help hydrate me, and ultimately help me heal. After a week of that, I failed at it. It’s been about a month and I am doing better, but still flaring. I see him again in November and I worry what the results of the meeting will be. I am thinking of going off LDN and trying a new biologic. What is really comes down to is that I think ultimately I will have to keep a gluten free lifestyle for the rest of my life…and that doesn’t make me happy.

One good thing that has happened lately, is that I participated in a research study from 23 and Me (https://www.23andme.com/ibd/). From this research I found out so much about my DNA. First, I found a second cousin which has led me to find out so much about a part of my family I didn’t know existed. So Cool!! Also, from this, I was able to have my DNA analyzed (www.promethese.com). I found out from there that I am more prone to get Crohn’s Disease (really??) and that I have a higher chance of being a celiac. Gluten Free is really sounding like it is the way to go.

The third major part of my life is my knee. I have developed arthritis in my knee. Physical therapy didn’t help one bit. Every day I am in pain. I hate it and now I have to decide what is the best course of action. Do I get injections for years which only helps temporarily? Or do I insist on a knee replacement, which means surgery. It means hospital stays, rehab, and missing work for who knows how long.

When did I get old? When did my body start to betray me? What is wrong with me? I wish I had answers to my health. I know many of you with IBD wish you had answers for your issues.  So now I want to know…how do you feel?  What is wrong with you and what are you doing to fix the situation?  Do you have any suggestions for me?

Goodbye To My Old Life


Good Bye

 

This happens to many people every year.  Many of them deal with it and move on.  For us with incurable diseases, it is a major issue.  I now have to deal with it and I am scared.  I am talking about changing doctors.

For years I didn’t have a General Practitioner (GP) and I was fine with that.  I have been jumping around from doctor to doctor and that really hasn’t bothered me.  I always had my GI I could talk to and help me work out any problems.  With my insurance, I can see any specialist without a referral so I felt like I didn’t need a GP.  My GI doctor is a whole other story.  I have been seeing this one for about 6-7 years now and have built up a great relationship with him.  If you read my blog you know some of the issues I have had and how caring my GI has been to them.

Yesterday I came home and saw a letter from Mt Sinai.  I thought it was junk mail and wasn’t going to open it.  Something made me though and I am glad I did.  It was a letter saying my GI was leaving.  I felt so scared all of a sudden.  I don’t worry so much about finding a new one because there are a couple of GI’s with Mt Sinai I know of that are really good.  What scares me is that I have to start over.  I have to share my entire history.  I have to work with a new thought pattern from the doctor.  Worst of all, I have to hope the new GI will approve the LDN I am taking.  That is what scares me the most.

I know in the long run, things will be fine.  I know I really shouldn’t worry as much as I am, but I can’t help it.  Going into something new like this always worries me.  It is just who I am.  Luckily, I have had some good support online from some great people.  They are helping to reduce my stress.

What I would like to know, is how many of you have had to deal with this and how did it turn out?  Did everything go smoothly?  What are your thoughts on changing GI’s when you have a great one?

I do have to say, I will miss my GI a lot.  Luckily he is actually moving closer to me. I just can’t get there and get to work in the same day.  He won’t have weekend hours so I don’t think I will be able to see him anymore, hence I have to look for a new GI.

Crying

Lyfebulb Social Club


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.

 

Low Res_Dr. Karen Hehenberger Addresses The Crowd

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.

Low Res_Guests Attend Lyfebulb Social Club

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.

 

 

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


Junk Food

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


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


The Inspirational Blogger Award!

 

very inspiring blog award

  • 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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. Shari from http://ihaveulcerativecolitis.wordpress.com/ is yet another inspirational person.  Her blog is about her life with UC and her stoma Fred.
  9. 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.
  10. 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.
  11. 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).

The last set of nominations were listed in my seven facts about me.

 

 

Guest post from James Patterson


My thanks to “AGUYWITHCROHNS” for letting me guest post on his website. I have had severe Crohn’s Disease for over 47 years with many surgeries, emergencies, medications, complications, emotional upsets and other issues that go along with living with a chronic disease for decades. I have learned and developed various tools to handle both the physical and emotional/mental symptoms. Recently I compiled some of this information and wrote a book about it titled “Living with the Bully of Crohn’s Disease” that is available on Amazon in both Kindle and paperback formats. My hope in writing the book was that others could learn from my experiences; both the mistakes I made and the good choices that helped me to heal.

I thought I would use this blog opportunity to write about one statement I hear discussed by many fellow Crohn’s patients. It is “I wish things could get back to the way they were (Pre-Crohn’s)”. This thought was also my own for many years and I expressed it regularly. However, over time, I learned to modify how I work with this thought and this has helped me handle the associated mental and emotional pain.

The idea of “wanting things to get back to the way they were” is a very common statement I make to myself as I experience various losses in my life. This could be the loss of a loved one, the loss of a job, the loss of my youth, the loss of respect when I humiliate myself by doing something stupid, the loss of a relationship, and of course the loss of my health with Crohn’s disease. In all of these situations, I perceived that things were better before the event and worse after the event. Thus I wish things could go back to the way they were.

However the reality is that in most cases, things have generally changed forever. There is no turning back the clock. This reality can set me off into a mental funk of depression, anger or fear. These irritating emotions further exacerbate my health and even if the situation has nothing to do with Crohn’s, my poor response to bad news creates more stress and makes my Crohn’s worse. So what do I do to handle this highly irritating thought or reality that “things have changed forever”.

  1. I first realize that change is a part of life. We all go through it and it is inevitable. Thus I am not being singled out as a victim due to change. In the case of Crohn’s, one can argue that I did not ask for it and it is not fair and thus I am a victim. My answer is that I did not ask for it but then many other people do not ask for diabetes, arthritis, depression, heart disease, bad menstrual cramps, or chronic pain. In fact most people have at least some part of their physical or mental health that gives them some grief. Thus I have learned to accept that I am not being singled out by having Crohn’s and life is not punishing me as it does not punish the millions of other people who have an ailment. This realization helps me to better accept the presence of Crohn’s in my life.
  2. I recognize that even if I am stuck with a difficult ailment, I can work on it. I can look at better medical options by pursuing new treatments, finding a new doctor, looking at new options for handling my mental consternation or taking up new mental programs that help relax and nourish me. I do not have to simply “take it” but instead I can work at my health and make it better. I have also learned there is more to being healthy then simply a healthy body. I know many angry and bitter people and I would not consider them to be healthy even though they have no physical issues.
  3. In the past I have equated change with disaster. This has not been true and it took me decades to figure this out. I felt that with Crohn’s my life was going to be minimized and full of unrelenting pain and struggles. However, I can speak from experience and say that my life has been full of great relationships, a nourishing career, many comforts of home, and a deeper appreciation of the gifts I have in my life. While I have learned to accommodate the Bully of Crohn’s disease, I have found many joyous and fulfilling events that have been meaningful. In fact, living with a nasty disease like Crohn’s has caused me to truly appreciate life’s gifts.
  4. I have taken stock and realized that even with Crohn’s disease; I have many strengths and skills to draw upon. I have built a good mind full of courage, stamina, joy, peace, and creative thought. I also have a good working heart, kidneys, lungs and brain. All of these are with me even after the diagnosis of Crohn’s and are areas of my life that I can build on and work with to express the life I want. I am much more than Crohn’s disease with an inflamed piece of bowel. Crohn’s is a part of me but does not define me.
  5. Crohn’s requires me to accommodate its bullying nature. When it screams and yells via its painful bowel expressions or bleeding, I need to pay attention and accommodate it while doing my best to help it heal. This is what I do on a stormy day as I come indoors and need to take some time and let the storm pass. While accommodating these challenging times may not be my heart’s desire, I can live with it. There are many difficult times in my life with both relationships and work that I would rather avoid but that is part of living. I can learn new skills to handle challenging life events and help ameliorate these challenging times. As I do this work, I realize there are many gifts in the garden of my life that nourish me and I can live with a few weeds.
  6. In the past, I have used these times of Crohn’s flare to yell and cuss my misfortune and this has never helped me. Instead it has only made me feel worse. My desire to hate this disease and fight it puts me on the defensive and creates even more internal turmoil. I have learned to treat Crohn’s as a wounded part of me and give it my kind, thoughtful, loving and nurturing attention. My bowel did not do anything wrong; it is just sick. It does not deserve my wrath and anger; it deserves my warm caring attitude. For in effect as I yell and curse the disease within me, I am cursing and yelling at a part of me. The net effect is I just feel worse. Thus I treat Crohn’s as I would a sick child that I Love and do all I can to help it heal. This type of relationship has helped me to better handle the ups and downs of the disease. I now see myself as a healer of my sick body versus a fighter of something within me that did nothing wrong.

I wish “AGUYWITHCROHNS” and all others who read this the very best in the years ahead. I am confident and can speak from experience that while the future might be different then what you planned, life can be rich and rewarding.

 

James book can be found here and I would recommend getting a copy.  It is a great read.

Living With The Bully of Crohns Disease