Goodbye Conventional, Hello Unconventional

Sep25

3 Weeks ago, my treatment for Crohn’s made a change. I took my last shot of Humira. That was my final attempt at a conventional treatment. Since 1988 I have been treating my Cronh’s with conventional medicine. I have run the gambit and tried every catagory of medicine there is with no luck. I have a mild case of Crohn’s and yet I still can’t get into remission. My gluten-free diet has helped but I am not 100% there yet. Humira was the last real medicine to try and that has now failed. So, it is time to get off the road and look for another route.

After doing some research I found that Low Dose Naltrexone (LDN) was being used as a treatment but as far as IBD is concerned, it is still experimental. There are a couple of small studies done and they all have looked promising. For anyone that doesn’t know what LDN is, Naltrexone is a medicine usually used in high doeses of 50 mg. It is used to block the feelings of opiates. Mainly, the drug is used to help people get off drugs. It blocks the feelings they get from the drugs so they can take something like heroin and not feel the effects from it. LDN is the same drug only in a low dose form..4.5 mg. LDN helps to boost the immune system and has been shown to help fight inflammation. No one is sure just yet how it is fighting the inflammation which is why it hasn’t been approved yet. More studies need to be done but a lot of doctors are now starting to get behind this drug.

One theory I have as to why this hasn’t been looked at widely yet is that it is an inexpensive drug. You can get a 30 days supply for $15 (without insurance). That means that no one is really making money off of it..so why would anyone reasearch it. There is no money to be made. A second theory which I just thought of yesterday is that a lot of the meds for IBD lower the immune system. On the whole, the scientific community has been looking at lowering the immune system to treat IBD. LDN raises and helps the immune system. This is going against what the scientist have been researching…so this would prove everyone wrong.

When I first talked to my GI, I mentioned going off of Humira to start LDN. He had never heard of LDN as a treatment and was hesitant. Yet, he wanted to do research on it. I gave him some time and about 3 weeks ago he told me that it was experimental but he would try it out. He has no other patients on the med so this is new ground for both of us. I am very happy that I have a GI that has an open mind and isn’t scared to try unconditional methods.

Yesterday, I got my script and was very happy. I was nervous to take the pill as I don’t know how I am going to react to it. The first couple of nights it is said it can cause insommnia and I did wake up at around 3:00 am and couldn’t fall back to sleep. This is suppose to go away after the body gets used to the drug and in fact it is suppose to help you sleep. I can’t wait until I get used to the drug. Overall, there are no side effects which is why I wanted to use this med. The worse that can happen is that it doesn’t work and I get a bad flare.

The only other major effect to this drug, is while I am on it, I can’t take opiate pain killers. This worries me in case I ever have to have emergency surgery but for my colonoscopies, I can just stoip taking it for a couple of days.

I know a lot of people don’t know too much about LDN so I am going to try to write about my experiences as they happen. So on day one, I am normal but tired. No sleep will do that. Day 2 will probably be the same. Wish me luck as I want the insommnia to pass fast and hopefully by the weekend I can sleep again.

Stay tuned for my journey down this new road. I am sure it will be a great adventure.

Advice For A Terrific Life

Sep21

I was going through an old blog I was doing and I found this post that I made. I am sure I copied it from someone else..but I thought it was nice and I wanted to repost it here.

Give people more than they expect and do it cheerfully.
Marry a man/woman you love to talk to. As you get older, their conversational skills will be as important as any other.
Don’t believe all you hear, spend all you have or sleep all you want.
When you say, ‘I love you,’ mean it.
When you say, ‘I’m sorry,’ look the person in the eye.
Be engaged at least six months before you get married.
Believe in love at first sight.
Never laugh at anyone’s dreams. People who don’t have dreams don’t have much.
Love deeply and passionately. You might get hurt but it’s the only way to live life completely.
In disagreements, fight fairly. No name-calling.
Don’t judge people by their relatives.
Talk slowly but think quickly.
When someone asks you a question you don’t want to answer, smile and ask, ‘Why do you want to know?’
Remember that great love and great achievements involve great risk.
Say ‘bless you’ when you hear someone sneeze.
When you lose, don’t lose the lesson.
Remember the three R’s: Respect for self; Respect for others; and Responsibility for all your actions.
Don’t let a little dispute injure a great friendship.
When you realize you’ve made a mistake, take immediate steps to correct it.
Smile when picking up the phone. The caller will hear it in your voice.
Spend some time alone.

Step out of the Norm

Aug16

Today I am stepping out of my norm…and I won’t really be talking about IBD. Today, the thing on my mind is my weight loss and a revelation that I had.

I have mentioned it in some other posts and I don’t hide the fact that I am one of those overweight people with IBD. When you hear statistics about obesity in America…I am in those statistics. I never saw myself as obese..but my weight told a different tale. I am 5 Foot 8 inches and before my weight loss journey I weighed around 240 lbs. Now I knew I was overweight and had some issues because of it. My blood sugar was high and my cholesterol was high. My Crohn’s Disease was out of control and I was in a flare I just couldn’t control. I knew I had to do something.

One day everything seemed to snap into place. I was starting to get a new outlook on life with my Crohn’s so I decided to take it another step and control my weight. I knew this wasn’t going to be easy. I have been overweight all my life except when I first got sick with IBD. I knew I had to get my weight down to the 160’s so I had a long road ahead of me. The trick to this was finding what would work for me. I have tried eating healthy before (high fiber, whole grains) but that would just anger my CD. The things my tummy liked were white bleached products like white rice and white bread…the unhealthy stuff. So this time around I did some research.

At the end of January of 2012, I went Gluten Free. This was one of the best things I have done in my life for both my health and my Crohn’s. Besides this, I also joined Weight Watchers..for the 3rd time in my life. I swore to myself this would be the last time.

Here it is August 2012 and I have done pretty good. So far I have lost 25 lbs and that is now where the trouble is starting. The gluten-free diet has been trying some days but I have managed to stay on it. The Weight Watchers is another story. One thing they teach you and say you should do every day is track your food. This helps in keeping tack of your daily points for the day. Overall I have enough points right now to keep my satisfied. But lately, I find myself on the weekend skipping the tracking. Needless to say for the past 2 weeks I have gained some weight back.

Now one of the things they asked us is in a meeting was what keeps you motivated. WW has this idea of anchors. You should find something that when you look at it or touch it..it keeps you grounded and remind you why you are doing this. I felt I never needed an anchor. My biggest reason for losing weight was not only my bloodwork..but it was to keep my Crohn’s in check. That is my biggest reason and my main reason to never be overweight again. However, these past two weeks I have pushed that out of my head and ignored my body.

Last night as I travelled home, I reflected on the past couple of weeks. I was trying to figure out why I am self sabotaging myself. I have been doing so well with my journey. And then it hit me. All my life I have been overweight. When I look in the mirror I see a slimmed down version (although still overweight) of myself and I am starting not to recognize him. All I know is being overweight. Since I refuse to be that anymore…what is my life going to be like? How will I survive? Will I be able to maintain that life?

Some of my thoughts were a little irrational but I know they are in my head so I have acknowledged them. Whether the thoughts are rational or not, they are there and affecting me. So I looked into my fear in the eyes. I stared him down. I have been sick for too long and I swore I would get better. So here is this monster with chains in his hands telling me to come with him. Well…not today. You can take those chains and find someone else, because you won’t get me anymore.

I want to be healthy. I want to be in remission. I want to look in a mirror and say “Damn…who is that sexy guy?” For years I have wanted to feel like a skinny person. Well, I am going to get that chance..one day. I know my fears will come back and haunt me probably for the rest of my life. But I am done being overweight. I want to live. I want to enjoy life. I want to be around for a long time.

So, my journey continues. I have hit a fork in the road and a chose a path. So far, it is a clear path. I remember where I am heading and I am back on the yellow bricks again. My companions are by my side to guide me along.

My courage helped me face those dark fears. My brains helped me see those fears for what they were. My heart helped in clearing a path so I can step around the fears. And my little dog was there to lick my face and show me that everything is alright and I can continue on my way home. So I take those first steps again on the long road home. I will get there. It won’t be a short trip and there will be other obstacle. And if any of those obstacles are flying monkies..I am running.

Recipe for Success

Aug14

Two weeks ago at my Weight Watchers meeting we were talking about recipes. We were encouraged to bring in a recipe to swap with everyone. When it was my leaders turn, she gave us a recipe…but not for food. I looked it over and thought, this isn’t just relevent to food…this is good for life. So, I decided to share the wisdom of my leader and give you…The Recipe for Success

Ingredients:

1 Cup of Vision 1 Cup Commitment 1 Cup Discipline 1 Cup Self-Control 1 Cup Sacrifice 1 Cup Conviction 1 Cup Imagination

Directions:

In a large part of your life, add 1 cup of vision. Make up your mind which direction to go and strive for it everyday. Add 1 cup commitment. Commit yourself every day to reaching your goal. Add 1 cup discipline. Discipline yourself to do what you must to keep the committment and hold on to the vision. Add 1 cup of self-control. No matter what temptation comes, remember you have a choice. Add 1 cup of sacrifice. Be willing to give up bad habits for good habits. Add 1 cup conviction.

Have the courage to stand your ground knowing that you are mixing the right ingredients together in your life. Add 1 cup of imagination. Imagine what all this cooking will achieve in the end. Bring all of these things to a boil. Now pour it all into the rest of your life and you have the recipe for success. Keep it always on simmer.

As I read this in the meeting, I was no longer thinking about food. I know she gave this to us to help us stay on course and keep up with our weight loss. But I saw a bigger picture. Living with a chronic illness will do that to you. I didn’t just see food…I saw a recipe to beat an illness. I saw a recipe for me to get through life.

I know at times life with Crohn’s or Colitis can be hard. Sometimes we want to just throw in the towel and say I quit. But that is when we need this recipe. Sometimes, we need to alter a recipe and add a little more spice to it. There are days we might need 2 cups of self-control. Maybe we need a gallon of vision because all we see is our blanket covering our eyes. Whatever the day…keep this recipe close at hand. Make it your first meal. Make it your last. Make a big batch of it on the weekend for the whole week. Whatever you do…make sure to make it at least once a week.

Feeling the IBD Love

Aug10

This week I was asked to do a guest post for a great website..which leads into this weeks “Follow Friday”. Usually the advice I give can be used by everyone but I normally have adults in mind. Well, this week I am here to talk to the youth.

So, this week I want to single out a great website that is run by The Crohn’s & Colitis Foundation of Canada or CCFC. It is a site called The Gutsy Generation: (http://www.thegutsygeneration.ca/site/c.buLTK7OQLpK8E/b.6247843/k.C798/Connect.htm). The post I did can be found on their blog site which is http://thegutsygeneration.blogspot.com/.

Now I am not talking about them because I did a post for them. I am talking about them because they target a huge audience….the kids. Looking over their website, I was reminded of my own youth. I was 15 when I was diagnosed with IBD and essentially that is when my childhood ended. I remember the feelings and the pain like it was yesterday…yet it was 24 years ago. When I was first asked to write the post, I didn’t know what to write. I wanted to connect with the kids today that suffer, but wasn’t sure what to say. When all my memories started to flood me I said to myself….”That is what I am going to write”. I said from the beginning that I wanted to help people know they aren’t alone with their IBD and that was what I was going to do. By showing the youth out there that even us adults have gone through the pain and hurt…and survived it….I can help them to know that they also will survive.

It has been 2 days since I wrote the post and I still keep thinking about those first days. So much has changed thanks to the Crohn’s. I was a shy kid growing up. I didn’t have the best self-esteem and I was very unsure of myself. I was an average student and never knew my purpose in life. College helped me a lot to discover who I am, but my Crohn’s helped me become who I am. I had to get courage to overcome it. It helped me to speak up and speak my mind. I directed me where to go in my life because as we all know, a lot of what we do, we do tailored around the disease. When I got sick last year and then started doing research on IBD, again it moved me into a new direction. Here I am now, toting my wisdom and trying to help others.

I grew up alone with the disease. Back in the 80’s no one knew what IBD was. Worst of all, there weren’t many treatments for it. There was no internet so it was very hard to find people with the disease. All that I learned about my disease I learned through pamphlets from The Crohn’s and Colitis Foundation of America. They helped…but never really taught me about my disease. I grew up ignorant of what I have.

Now, things are different and websites like The Gutsy Generation exist. No one has to go at their disease alone anymore. All they have to do is reach out. The last paragraph of my post for TGG sums up my feelings and I will end this post with that paragraph:

“As I look back into the mirror, I can still see that 15-year-old. The lines are growing. The hair is changing. But I can see him in the eyes. I see the twinkle. I have made it 24 years with the disease. No matter what happens…I can live life. The disease hasn’t beaten me…and it never will. And that is the best advice I can give anyone….Never let it beat you…you are too strong.”

Inspiratation – Where do you find it?

Aug6

Recently, I watched a video from a fellow IBDer and she was talking about seeing other people do amazing things like running races and she was at a point in her life where she couldn’t do those things because of her fight with IBD. I wrote her a letter to help cheer her up and as I was writing it, I realized how much of an inspiration she really had been to me. She was one of the first people I watched on YouTube when I started flaring last year. She showed me that even though we have a chronic illness and it can affect us greatly at times….we should still live our lives.

When I wrote her, I also came to another realization. I have never had a mentor in my life. Whenever I had started a new job, so one ever took me under their wing. I never really had anyone I could say that I truly looked up to. But, she really changed my life and I always find myself looking at what she is doing and try to be a little like her or more specifically, try to be like her in helping people with IBD. To this end, she has kind of been like a mentor to me even though she didn’t know it.

Now, she isn’t the only one that has inspired me. There are so many people out there and if you look back over my blog, you will see who they are. Some of them I have written about. Others, I have included in my “Follow Friday’s”. There are so many great people out there advocating and giving me inspiration to get on with my life.

Recently, I have been starting to flare again and I felt some depression setting in. As usual, I started to withdraw within myself like I used to. But then I saw that video and wrote my online friend. I wrote her to cheer her up but it also was very therapeutic to me. I was able to get some things off my chest. Realizing how much of an inspiration she was in the past, helped to inspire me again. So, I am back fighting again.

Next week is a big part of the battle for me. I see my GI and I will be asking him to switch my meds from Humira to LDN. Since this isn’t a typical treatment for Crohn’s just yet, it will be a battle, but I am ready. If I let the depression sink in, I wouldn’t be able to have the conversation with my GI and argue it effectively. But thanks to my inspiration..I am going in guns blazing.

So, now I ask…..who are your inspiration. I would really love to hear back from you on who inspires you. Whether it is just to continue your fight with IBD, or someone who pushes you to blog, or helps you to get out and about with your life. Is your inspiration a person, a group of people, or a website?

I want to leave you with a quote I found online about inspiration:

“Inspiration is like picking up one of those blinky things in a video game that makes you invincible for a while. You can do anything, go anywhere, and you don’t have to worry about it.

Those blinky things exist in real life too. It may be a picture, or some words, or a sound, or an idea, or a mistake, or a moment. Whatever it is, pick it up and run with it. Run with it like you stole it.

You can’t bottle up inspiration. You can’t put it in a ziplock, toss it in the freezer, and fish it out later. It’s instantly perishable if you don’t eat it while it’s fresh.

Inspiration is a magical thing, a productivity multiplier, a motivator. But it won’t wait for you. Inspiration is a now thing. If it grabs you, grab it right back and put it to work.”

And just incase you are reading this and trying to figure out who my inspiration is…I wasn’t going to say because I don’t like to mention people’s names on here …but it is Sara from Inflamed and Untamed.

Iota Beta Delta – This one is for the women

Jul23

I decided to post this for 2 amazing health activists.

This one if for all the ladies out there with IBD or any chronic illness. Are you in college right now but don’t feel like you can join a sorority because your illness won’t allow you the time. Or did you not have the chance to do it while you were in college but now your out and you want that feeling of sisterhood. Maybe you’re at the point where you can’t even go to school right now because of your illness.

Well, Maggie and Kelly have started a sorority just for you. It is called Iota Beta Delta (IBD). This is not an actual accredited sorority but they want to give that feeling to the women that couldn’t join one for whatever reason.

Check out their site at http://iotabetadelta.webs.com.

Traveling with IBD

Jul19

I just came back from vacation and for the first time in my life, I was really scared about traveling with Crohn’s Disease. In the past I never worried about it. On the days where I would actually be traveling, I would take Imodium and that would be that. I never worried about food choices either because in the past food wasn’t an issue with my Crohn’s.

This year was different. For the first time in my life, I was staying in a Caribbean country. I went to the Dominican Republic for 7 days. Now the trip there didn’t worry me. I have flown many times and was just excited not nervous so my stomach behaved. My biggest worries would be the food this time around as my breakfast choice was going to be hard. As a reminder to everyone, I have gone Gluten Free and eggs upset my CD. Originally I bought some Chex cereal and almond milk to bring with me, but there was no room in the suitcase for them so I had to leave them behind.

When I got to the resort it was so beautiful and relaxing I thought, this would be great. By dinner time, my worries kicked in. Now at the resort I stayed in, there was a buffet for breakfast and lunch and for dinner you could do the buffet or you had a choice of 2 restaurants. There were a total of 4 restaurants but only 2 were open each day. As I looked at the menu’s of the restaurant I saw it was going to be very difficult to eat a GF diet. Just about everything had gluten in it. From every menu, there was maybe one item that was just naturally GF but of course I would have to worry about cross contamination. I could deal with that though. So for the first night, I survived, but the food didn’t taste good.

Come morning, it was buffet time. I knew this would be a challenge so I brought my digestive enzymes just in case I had to eat eggs. Turns out food would be the least of my worries. The dinning area was opened all around so birds were flying in constantly. They would walk all over the tables and fly to the food. They would even peck and eat at the food on the buffet. The workers there didn’t seem to care and this started to turn my stomach. I quickly learned that food sanitation and safety meant nothing here. The food workers wore no gloves, used utensils to touch raw and cooked meat together, and the food never seemed hot enough and sometimes not cooked enough.

So needless to say, keeping myself healthy was going to be a real challenge. Just looking at the dinning building would turn my stomach. I lost my appetite pretty quickly that first morning and for a week I hardly ate anything. The restaurants didn’t have bird issues but they still had the other issues. I couldn’t wait to leave and get home to eat a real meal.

Over all, my CD never acted up (surprisingly) and I survived DR. It was a very relaxing trip aside from the food and I didn’t want to leave. But this trip opened my eyes to what many other people with IBD must go through. Someone with active CD or UC might have gotten really sick from those conditions. It also made me realize that for any future vacations, I am really going to have to plan and research places well. I will never go clueless on vacation again.

So here are some advice to others with IBD for traveling:

1) Make sure you have anti-D meds with you and enough of your regular meds.

2) If you are going to a resort, see if they can send you menus of their restaurants. Also ask them if they can accommodate any special diet you might have.

3) Bring some IBD friendly foods with you.

4) If your staying at a hotel, look online for some IBD diet friendly restaurants. Most restaurants these days post their menus online.

5) Check to see if they have a doctor where you are staying. If you’re in a tropical country, the nearest hospital can be hours away.

6) Make sure you have up to date medical records with you and if your on meds, keep a list of them in your wallet just in case of an emergency.

7) Never be afraid to ask. If you don’t see something, ask if they carry it. If your GF and you don’t see any GF foods, they might have some and just don’t put it out.

8) Tip the staff well. They will remember you and help you out more than someone who isn’t as appreciative.

Well, that is all I can think of for now. I hope these tips can help you out the next time you travel. I know I will be planning my next trip out very meticulously and won’t make the mistakes I made this year.

My First Interview

Jul9

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

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

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

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

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

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

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

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

Mood Music…What is Yours?

Jun15

IBD, as with any chronic illness, can bring a person down. Between the gut pain, joint pain, butt pain, etc. a person can get really depressed. I know, I have been there. So one way to get out of the funk I have found is to listen to music. But not just any music. It is what I call Mood Music. This would be songs that help you relate to the world, songs that get you into a good mood. Lately I have been listening to the same couple of songs on my computer. I have been doing a lot of talking with fellow IBDers online and these songs keep popping into my head. So I want to share a little of what has been getting me motivated and moving lately. Be Warned…some of the songs are cheesy..but they help.

So here is a short list of the songs I am listening to right now and why I have chosen to listen to them.

1) Inside Job by Pearl Jam. – This song was written by Mike McCready about his experience with Crohn’s Disease. I love Pearl Jam but have never listened to this song before. I never got into their late 90’s and 2000 songs. I regret that now because this song is really good.

2) Call Me Maybe by Carly Rae Jepson – Ok, this is cheesy. But I have been reading lately a lot about people with IBD and how hard it is to have a relationship. This just reminds me of how hard it is just to meet someone when you are sick with a disease.

3) What Makes You Beautiful by One Direction – So many people feel ugly with Crohn’s and Colitis. They have so much pain at times that they don’t want to beautify themselves. Then when they look in the mirror all they see are the scars of the disease. But everyone….EVERYONE is beautiful. This song just is a reminder of that.

4) Beautiful by Christina Aguilera – This again plays into the previous message. But really listen to the words. This song is about believing you are beautiful no matter what anyone says. This is showing your self-confidence, which all IBDers need.

5) What Doesn’t Kill You (Stronger) by Kelly Clarkson – This is just a powerful song that gets you up out of your chair and moving. You are strong and can do anything. These disease make us all stronger. We live through the pain and depression. We go through so much and that just makes us stronger.

So that is just a sampling of my music selection that I have been listening to lately. I would love to hear some suggestions on what to add to that list. I also would love to hear what other people are listening to. Let me know.