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.
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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


 

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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.

I Have A Dream


MLK I Have a Dream

Today, January 20th, it is Martin Luther King Jr Day in the USA.  For anyone that doesn’t know who he is, MLK was  an American pastor, activist, humanitarian, and leader in the Civil Rights Movement.  One speech he is well-known for is his “I Have A Dream” speech.    Part of his speech was, “I have a dream that one day this nation will rise up and live out the true meaning of its creed: “We hold these truths to be self-evident, that all men are created equal.”  Also, “With this faith, we will be able to hew out of the mountain of despair a stone of hope. With this faith, we will be able to transform the jangling discords of our nation into a beautiful symphony of brotherhood. With this faith, we will be able to work together, to pray together, to struggle together, to go to jail together, to stand up for freedom together, knowing that we will be free one day.

Now of course, MLK was talking about racism and how one day everyone will be judged as equal and not be looked at for the color of their skin.  This speech was given on August 28th, 1963.  Times were definitely different back then.  Looking at our times now, a lot has changed.  To start, we have a black president of the USA.  Segregation is illegal.  In most places, you aren’t judged by the color of your skin.

But, when you do look closely at the times, some things haven’t changed.  Back in 1963 the president was John F Kennedy.  As many people now know, he suffered from many illnesses, which back then were kept secret.  One of those illnesses that he is thought to have had was IBD.  Not much was known about it then and there weren’t a lot of treatment options.

Fast forward 50 years and a lot more is known about IBD.  We have many treatment options to us, both medicinally and surgical.  However none of these treatment options are cures.  Anyone with IBD has it for life.  Sadly, a lot of us won’t even be able to experience some of these treatments because once again we have inequality.

Instead of race being an issue, this time it is wealth.  Crohn’s Disease and Ulcerative Colitis can occur within anyone.  It is said that about 1.4 million Americans suffer from IBD.  The disease doesn’t care if you are white, black, asian, or hispanic.  However, where the inequality comes in, is in the treatments.  Many of the drugs are expensive.  If you don’t have the money, you can’t have the drugs.  There are some exceptions and the drug companies do help some people.   Sadly though, there are many people out there suffering every day because they aren’t being treated.  They are ignored because they don’t have health insurance.  They are out of work and don’t have the thousands of dollars needed for a month’s supply of medicine.  These people are pushed aside and told that they can’t have something because of their status in life.

MLK had a dream.  His dream was that African-Americans would be treated as equals.    For the most part, his dream has come true.  Now, I have a dream.  I have a dream where one day people will be allowed to be given medicine regardless of the amount of money they have.  I have a dream where one day people will be treated for their illnesses because they are sick and not because they can pay a bill.  I have a dream that one day IBD will be looked at as life ending diseases and a cure will be researched and found.  I look forward to when IBD will be given the respect it is deserved.  And I will end this with the final words of MLK’s speech:

And when this happens, and when we allow freedom ring, when we let it ring from every village and every hamlet, from every state and every city, we will be able to speed up that day when all of God’s children, black men and white men, Jews and Gentiles, Protestants and Catholics, will be able to join hands and sing in the words of the old Negro spiritual:

                Free at last! Free at last!

                Thank God Almighty, we are free at last”