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

The “R” Word


According to Ali G it is Respek.  According to another IBD blogger, Mary Claire, it would be Resiliency.  For me it is bigger then both of those words put together.  This week, I heard the “R” word officially for the first time since getting Crohn’s Disease…Remission.  My colonoscopy was back in February and I knew I was healed more than the previous year.  Sadly the pictures didn’t save so I couldn’t actually see the results.  This week was my first appointment with my GI since then.  After a little chit-chat and a quick exam, he went on his computer, pulled up the scope results, and mentioned how there was no Crohn’s activity and that I was in remission.Happy

Needless to say I was a little shocked.  I knew I was doing well.  I don’t show many symptoms these days.  I didn’t know I was completely in remission though.  I was so happy.  But like all things, the moment has now passed.  Of course, I am still happy, but just because the Crohn’s is in remission, doesn’t mean I still don’t get symptoms.  Because this is such a nasty disease, even if my intestines are healed, I can still show signs of the damn disease.

The first sign is my joint pains.  Both my knees and my knuckles get bad arthritic pain at times.  Then there are the mouth sores that come on at any given time.  Next are the skin problems like rashes and pimples.  The list can go on and on.

But what does remission mean..to me.  Well, it actually means a lot to me.  For the first time in a long time, my medicine is working.  After years of throwing poisonous medicine into my body without any results, I switched over to a non-conventional drug.  2 years after starting the med, I am in remission.  I would say it is working perfectly and scientist really need to start studying the role Naltrexone can play in IBD.  Another great thing in all this is that my doctor is also convinced that LDN works and might start giving it to other patients.  I was his first and his guinea pig.  I would say the test has been successful.

Another thing this means to me is that diet does in fact play a role in IBD.  For years I ate what I wanted and never healed up.  Along with the change in meds, I also went gluten-free.  It has been a bumpy road in my gluten-free journey and I really have to fight some cravings every now and then.   But ultimately it really has helped in my healing process.

Now, please just know, I am not saying that if everyone took LDN and went GF that they would achieve remission.  Everyone is different.  What works for one person not might work for someone else.  My results may not be typical.  I don’t know since there are no studies showing a correlation.  So please, don’t stop your current therapies to try mine just because I got results.  Whatever you are doing might give you the results you need.  If you are not there yet, be patient.

So for now I will sit back and enjoy what this word means to me because I know like so many others know…that this feeling can go away at any minute.

Crohn’s Forum


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This is just a little post to let you know of some more good things happening.  Recently I was asked to do a monthly post for The Crohn’s Forum’s blog page.  So far there are three others doing post’s for them and many of you will know these names.  They are Jackie from Girls With Guts, Jessica from Uncover Ostomy, and Kathleen from Crohnological Order.

So far all of the post’s I have done for them have been different from what I post on here, and that has been the challenge for me.  As you know, my posting have declined lately.  One of the reasons for that is I don’t know what to talk about.  I have been very busy lately and haven’t had time to focus on my disease.

So, I know I have asked in the past…but what would you want me to talk about.  Are there any topics I haven’t covered that you would want me to talk about?  I am pretty open to anything and as you know, I won’t hold back.  While you think about it, go check out the Crohn’s Forum’s blog site and while you are there check out the rest of the site.  You might meet some new people there and find a new friend.

I do have to say, one really cool thing about their site is their doctor directory.  They have a list of doctors from all over the world with reviews from patients.  If you need to find a new doctor, this can be a great tool for you.

 

IBD Support


In a previous post I had said I was working on some projects and I would let you know what they were when I could.  The first was the IBD prom which sadly, had to be rescheduled to 2015.

The second project I am happy to announce now is a support/meetup group.  I have been working with The Intense Intestines Foundation to organize a support group for the Northern New Jersey area.  Today we have finalized the details.  On May 28th we will hold our first meet up.

Meetup 1

Over the years I have found that CCFA has been losing touch with people with IBD.  I personally asked for a support group to be formed by them in the Northern NJ area but they denied it.  So, when Brian from IIF heard I wanted to start up a group, he asked me to join on to help IIF in bringing groups to the NY, NJ and CT area.  This will be the first of many new groups.

If you actually live in the area and want to come please let me know or email the IIF at Info@IntenseIntestines.org

Colonoscopy Time


Recently I went for a colonoscopy. This is by far the worst time of the year for me. Every year during President’s week in February I go in for a couple of hours to have my GI dr. look at my insides. This in itself is nothing for me. I am put to sleep and don’t feel a thing. It is the day and night before that really kills me. colonoscopy

Before you can get scoped, you have to be cleaned out. That means you have to take powerful laxatives that keep you in the bathroom all night. Growing up, I used to have to drink this nasty liquid from a gallon jug. Of course, I could never get the stuff down. It was by far the worst tasting stuff ever. Over the years they improved things…a little. Now there are choices. You can do this small bottle of phosphate soda which to me is also nasty. There are pills that are the size of horse tranquilizers that you can take. They are also nasty as they are very salty. The easiest form for most people and I think is probably the most popular one now is Miralax mixed with water, soda, Gatorade or any other liquid. However, I can’t get that down my throat either.
prep_meds_new
The prep is very stressful on my body and I get the worst nausea ever. I am sure a lot of it is mental but it is still there. So, my prep is very easy…as far as consuming goes. I take 3 pills of Dulcolax followed by another 3 about 4 hours later. Now I must stress…this is not a normal prep so please don’t do it unless you talk it over with your GI dr. Luckily, I don’t have many issues with my gut. I have no strictures and have had no surgeries. So, this prep method cleans me out fine enough. It does however kill my guts. It gives me the worst cramps and eventually the nausea is so bad that whatever liquid I drank that day comes back out. Once I am cleaned out, the dry heaves start. I get really bad and I feel like I am dying. I do know that it will pass and that thought alone gets me through it.

The other down side to the day before is that you can’t eat anything. You have to be on a clear liquid diet. That means Jello, broth, tea and lots of water. This year, I spent my prep day watching a lot of television. Of course what do I see every 2 seconds…but something advertising food. I watched tons of episodes of Breaking Bad and they were either eating or at a restaurant or having something to do with food. UGH!!!toilet

As you can see, I survived my ordeal. For me, this is a fairly simple procedure. However, I know for many people this isn’t easy. I feel for those people because I know I have it easy and yet it doesn’t feel simple. I have actually seen someone get a number of these scopes within a year. I can’t imagine doing this multiple times within a year. My heart really went out to this person.

My only advice I can give to anyone that has this procedure done is to keep your chin up. The day of prep is just that…a day. It is for one day only. As bad as it seems, it will be over soon. In fact, the prep is worse than the scope itself. So when you are sitting on the throne, doubled over in pain, just remember. Tomorrow, you will get some great meds and a nice deep sleep. And then you can wake up to some juice and crackers, go home and have the best tasting low fiber food around because after not eating for a day, everything taste delicious.

IBD Prom


 

prom-night-banner-2014

So, as promised, here is one of the things I have been working on.  For a number of months now, I have been working with Sarah and The Crohn’s Journey Foundation.  They are based in California and are now wanting to break out on the East Coast.  As their introduction, they are holding a Prom style dance.

So I want to officially invite everyone to the IBD Prom at The Peninsula New York hotel on April 11thTickets can be purchased here http://thecrohnsjourneyfoundation.org/products-page/events/ibd-prom/  Please RSVP by March 25th, but the sooner the better as space is limited.  There will be a DJ for music, delicious food and drinks, a photo both and a silent auction with great items.

I have been helping to organize this and have been having such fun doing it.  I have been speaking with so many great people to get this together and even connected with a famous person in the music industry that also has IBD (name will be withheld…for now).  I am hoping to get a donation from this person for the auction.

In case you are wondering, no you don’t have to have IBD to attend.  It is for anyone that has IBD, knows someone with IBD, anyone that wants to support people with IBD, or anyone that wants to party like it’s 1999.

If you have any questions, please feel free to ask me.  If I don’t have the answer, I can get it.  So I hope to see many of you there.  And if you do come, please don’t hesitate to come up to me and say hi.

 

 

UPDATE: Sadly, the prom had to be rescheduled.  There is no new date, but the target will be April of 2015.  As soon as I have more information I will let everyone know.