Happy New Year – A look into 2014

Jan16

Wow, it has been awhile since I posted anything. I am sorry for that everyone. Life has been real busy, especially at work. A lot of good things are happening though so even though I am busy, it is a good thing.

I recently started working with The Intense Intestines Foundation (www.intenseintestines.org). I don’t want to say just yet what I am working on but I will definitely reveal that in a couple of months once all the details are worked out. I will say it has to do with supporting others with IBD and I can not wait to get started. I also have been working with The Crohn’s Journey Foundation (http://thecrohnsjourneyfoundation.org/). Again I can’t say just yet what it is I am working on but that will be revealed next month if all goes well.

So how was everyone’s holiday season? Did you have fun and do anything special? I know a lot of people I talk to online spent it in the hospital. Myself, I spent it on a cruise down south. My wife and I took a Christmas cruise to Florida and the Bahamas. It was reflecting on the cruise that got me to write this blog. I was wondering how many of you with IBD find it hard to travel and go somewhere?

This was my first cruise where I am gluten free. We had done some research and had read that there would be plenty of options for food for me. I really didn’t worry about it. I should have. My first clue was when we first got on the ship and went to lunch. The only thing listed as gluten free was the mashed potatoes. Good thing I know what normally has gluten in it so I was able to play it safe. This theme of lack of gluten free items would carry on throughout the cruise. Most of the desserts were not gluten free. I started to get annoyed because the reality is that it isn’t hard to do. They did have GF bread and it was ok. My dinners were altered to be GF and I was happy for that. But for desserts, they could have made a flourless chocolate cake. I am sure many people would eat it.

Overall, I had fun on the cruise. We went to Cape Canaveral in Florida, Nassau Bahamas and their private island in the Bahamas. I was lucky and had no major issues with my Crohn’s. I was able to go out and have some fun. I even was able to indulge in a little alcohol…ok…it was more then a little. I did worry at times that I might have some problems but luckily my guts stayed quiet.

I would like to know what some of your tricks are travelling. Do you pack extra clothes? Do you take certain meds to calm the guts? I remember take Lamodal on one cruise about 3 years ago. I helped me enjoy myself and gave me a life off of the toilet. Thankfully, I didn’t need it this time around.

Well, vacation time is over and it is a new year. I think this is going to be a great year. I myself am working on so many IBD related things. Besides IIF and TCJF I will be working with GYGIG again in June. I might do the CCFA Takes Steps this year. So much to look forward to this year. I hope to post more often and will let everyone know about everything that is going on. I do want to say that if you live in the NYC tri state area, we have some good things for you this year. But that is another post for another time.

Let’s all help fellow IBD Advocate Dennis Frohlich

Nov19

Recently I had the pleasure to do an interview with Dennis from www.UCVlog.com for his dissertation. He is doing a research study on how the online inflammatory bowel disease community is created and maintained and how viewers and readers use these websites. It was very interesting to talk to another guy with IBD and hear some of his views also. As part of the interview, he asked me to share his request and ask people to fill out a survey for him. Here is his request:

“Hello everybody!

I am a graduate student at the University of Florida and also somebody with ulcerative colitis. I maintain the United Colon Vlog (http://UCVlog.com), which you may be familiar with.

For my dissertation, I’m conducting a research study on how the online inflammatory bowel disease community is created and maintained and how viewers and readers like you use these websites. I’m looking for people 18 or older to complete a short survey about your activity in the online community.

As long as you have Crohn’s disease or ulcerative colitis you are eligible to participate; it doesn’t matter how long you’ve had IBD or how bad your disease is. If your IBD is indeterminate, or you are still going through diagnostic tests, you can still participate! And whether or not you’ve had surgery, you are still eligible.

The survey will take approximately 10-15 minutes. Please click the link below to access the survey. Thanks for your invaluable help!

https://ufl.qualtrics.com/SE/?SID=SV_cAqPW1khdSsFuC1

If you have any questions at all, please let me know.

Sincerely,

Dennis Frohlich

University of Florida

dennis.frohlich@ufl.edu”

If you haven’t checked out his site yet, please go look at it. He runs the site with Nadia who I have also talked with online and she is a wonderful person also. The two of them do some great work together.

I stumbled upon UCVlog early on in my research about IBD. When I first starting heading down the “advocacy” road, UCVlog was one of the first sites I found. I found their openness to the diseases refreshing and empowering. Dennis was also one of the first guys I saw advocating for IBD and this became a big inspiration for me to jump in and start advocating. As I have been saying for 2 years now…we need more guys to speak up.

Thank you Dennis for letting me be part of your research. With so much bad news about this disease going around lately (way too many deaths), it was nice to talk to someone who is inspiring and helped renew my faith that we can educate and one day maybe find a cure.

RIP Karrie Jacobs

Oct20

This week I learned again just how dangerous IBD can be. This week we lost another warrior in the battle against Crohn’s Disease. Karrie Jacobs, mother of 2 little kids and a wife to a loving husband, died from complications of the disease. I don’t know the whole story but it is being said that she had some issues with strictures and was having trouble breathing. She called 9-1-1 and by the time the paramedics got there, she had stopped breathing and had pasted on.

I got to know Karrie from a IBD group on Facebook. She was very kind to others and had a great heart. I wasn’t aware she had some issues go on so this was a big shock to me as well as everyone else. But is also shows just how deadly these invisible illnesses can be.

This isn’t the first time I have seen IBD take away someone. As many of you know, my Father in Law passes away because of complication due to Ulcerative Colitis. I never knew before him how IBD can be deadly. Now that I have learned more about both CD and UC I am seeing that they can be as deadly as any other disease. What makes this worse is that many people don’t know this.

When someone gets Cancer, they get Chemo. If you have clogged arteries, there are medicines that you can take to lower cholesterol. But when it comes to IBD, there is still tons of guess work going on and the meds we take don’t always help. A lot of the times the doctor “tries out” the medicine to see if it will help.

This all frustrates me so much. Because of the lack of education and funding for IBD, more people will pass away from the diseases. People that shouldn’t have to if more money was given into finding cures. Because so many people have no clue what IBD is, the government doesn’t focus on it. Instead it is left to smaller charities like CCFA to fund the research.

Recently, I joined up with IIF (Intense Intestines Foundation). They are a smaller charity that raises money and awareness for IBD. I decided to join because I would be working on something that is near and dear to my heart….education. I will be working on helping to educate both patients and medical professionals. I have wanted to do this for so long now and finally my chance is here.

My personal goal is to help bring IBD into the foreground so that we are finally recognized as a serious illness. I don’t want anymore people to die from these disease because, reality is, they shouldn’t be. We need a cure and we need it now. This won’t come until people get educated and help fund the research.

Karrie, you will be missed by so many people. Just know, you will be remembered. You were definitely loved and I want to make sure that no one has to go through what your family is going through now. A cure will be found….I want to make sure of that.

What’s Your Trigger

Oct1

Lately I have been thinking about how lucky I am in the food categories, compared to many others with IBD. I see people on TPN or liquid diets and think, “Well, at least I can eat solid food”. Even though I have some restrictions, every day I feel like I am lucky to be in the position I am in.

But today, I really thought about it and I have started to question, “Am I really lucky”. After my major flare, eggs which were a safe food for me became an enemy. So did bananas. I also realized that gluten products were not helping me to get well. I went gluten-free and cut out eggs. But, cravings would hit. I found the egg issue was a big one. After talking to others with digestive issues, I found out about Papaya Enzymes. I started taking them every time I ate eggs and they really helped. I would get no pain, wouldn’t have to rush to the bathroom 10 times a day and my outlook on food changed.

But now, there is a shift in my life. I take 5 enzyme pills when I eat eggs (bottle recommends 2-3). They used to help but now lately I have been getting some pains when I eat eggs. I know that means my body is adjusting to the pills and the efficiency of them is diminishing. Along with eggs, salad has now also become an issue. I used to be fine with any leafy vegetable. But now within less than an hour it runs its course and comes out almost as fast as it goes in. Slowly, my dietary choices are getting slim. I am back to trying to lose weight so I have to watch what I eat and my choices are shrinking.

So I was sitting here this morning, eating scrambled eggs and thinking, am I still lucky. As many of you know, I love food. I enjoy the flavors and smells. I love the entire experience surrounding food. I don’t feel I can survive on a very strict diet but that is where I am heading. Things I onced love to indulge in I can no longer eat. It has been almost 2 years since I had a slice of NY pizza or a bagel, chinese dumplings or pastries. So many foods that I took for granted I might never eat again. And that scares me. I am trying not to feel depressed over this but it is hard. I went to school originally to be a chef and I work in the hospitality industry. I buy food every day for work. It is my life. To look at a bounty of great looking food and know that I can’t touch it really saddens me.

Some of you might think this is self pity, and part of it is. I know there are others worse off than me. But most people don’t realize just what food means to me. It isn’t just a nutritional, life sustaining thing. It is a way of life and is a part of mine. I feel like today, a part of me has died.

So where does this leave me know. I am still struggling with my weight and trying to eat healthier. I am trying to diet. But this latest development hurt things. But I can’t give in and I won’t. I am done with excuses. I will find a way to get to my goal and overcome my obstacle. Hopefully, my passion for food will rise like the phoenix and renew itself. There are so many new foods out there to try. It might be time to explore options and see just what my diseased body can handle.

And worst case…as I am sure a friend of mine might suggest…there are always gummy bears to live off of. But that, is another story.

Absence Makes The Heart Grow Fonder

Aug31

I want to start off by apologizing. It has been over a month since I have posted and for anyone looking for a new posts to come here and find none I am sorry. Life has been very busy and sadly I haven’t had the time to get online to write a post.

Now that the summer is winding down and autumn is on the horizon, things will start to slow down a little. Work has been very very busy but after September all will quiet down there. At home, I am still doing board of director stuff and again, in October that might slow down also.

One thing I want to talk about while I have the chance is diet. As many of you know, weight has been an issue with me. I have talked about my journey with weight loss and doing a diet through Weight Watchers. This past year had me so busy that I stopped going to meetings and eventually stopped the program. I had hoped that I would finally be ok and keep the weight off. Sadly, I am now back in the boat of weight gain. It is slowly coming back and like Crohn’s…it is annoying the F out of me.

Like IBD which can flare up at any time, weight gain comes when it wants. So I am back with my demons trying to figure out what to do. I am still Gluten Free and that makes my diet issues even worse. I feel so loss on what to eat and what to do. As anyone knows, when you feel loss you feel stress. Stress then causes me to eat and the vicious cycle starts. Stress also makes IBD worse and causes flares.

Overall, I am still doing well with my CD. I see my GI in just over a week and I know it will be an uneventful meeting. He will probably won’t have me return for 6 months (I hope) which means my next visit after this could be the colonoscopy time. Ugh!! I am still on LDN though so I am curious how it is affecting my insides and if it has helped in the healing processes any. I feel great so I hope there is some significant healing.

But back to the diet. I went into a very big IBD chat group on Facebook to find out what other overweight IBDers have done as far as diets. Sadly, I didn’t get the answers I was hoping for. I did get some good advice, but overall it wasn’t what I was really looking for. A big advice was to cut back on carbs, which I will try. It isn’t easy as I have realized that I have an addiction to carbs. The other big advice was to increase protein. It was recommended that for breakfast, instead of cereal to eat leftover dinner protein. Um….no. That may be fine for some people and for some foods I can maybe do that…but overall, no. When I eat breakfast, I am still half asleep and so are my taste buds. They don’t need a shock of BBQ sauce or Teriyaki in the morning.

What I am curious, and I hope some people will feel ok to open up, what do some of you with IBD do to lose weight. I know most automatically lose weight, but for those of you that are like me and still have weight issues, what do you do. What works and what doesn’t. Feel free to leave a comment or even email me. I would love help from everyone and I really could use some direction.

“I No Longer Have Crohn’s, This So-Called Incurable Disease”

Jul22

Now that I got your attention…no I did not cure my Crohn’s. This is a quote from a writer/blogger that claims she cured her Crohn’s from practicing Buddhism.

As you can guess, I am about to go on a rant because this infuriates me. I have said it before, and will say it again. IBD is incurable. My last post was a repost from a friend who explains how even by removing the disease portion of your intestines with UC you are not cured. It helped open my eyes because I was one of those that used to say that if you remove UC, then you are cured. I know I was wrong in that thinking now. Now, we have this person that says if you just think your disease away you can cure yourself.

Before I go any further, please go read the article, which was put out by a news agency. https://open.abc.net.au/posts/my-freedom-from-bowel-disease-75ut3na

That’s right…a news agency. The same people who should be reporting facts are now reporting opinions.

Now, I don’t want to dismiss the whole mind/body connection. I do believe in it. For years I felt I controlled my disease by my thoughts. But I only controlled it. I would never say I cured myself, even though I had no symptoms and was off all meds. I was in remission. It is possible to use your mind to help control the body. I think her becoming a Buddhist helped her to clear and focus her mind. Meditation is good for the body. I won’t argue any of that. Also, I won’t argue that stress plays a big factor in our disease and by removing it you get better. Removing stress from the body at any time will help it heal against any disease.

“What became abundantly clear to me was that how we ‘think’ creates chemical reactions in the body. This in turn affects and can damage the cells within us. With no stress, the immune system works extremely well. By practicing acceptance, which prevents all stress, I got through breast cancer, skin cancer, and both my brothers dying of cancer. With each of these tests, the so-called incurable Crohn’s disease never returned.”

This was probably one of the few things I was able to agree with in the article. I am happy that this author was able to tackle Cancer and still remain in remission. I think it would take a very focused mind and it seems like she has one. I applaud her for that.

The one quote that worries me though was this.. “In my understanding I no longer have Crohn’s, this so-called incurable disease. Some doctors still find this hard to believe and often just say to me “So you are managing your Crohn’s disease well!” I manage nothing but my mind.” It worries me because she isn’t managing her Crohn’s. She is treating this like she is cured, and even the doctors don’t say she is. I think when she gets a flare she is going to spiral downwards real quick and probably suffer from some bad depression.

I sort of hope that Kit Campbell reads this and comes to the realization that she isn’t cured. I hope that she eventually sees what we all see, and that she needs to be treated. But I know reality and the truth is my job as an activists just got harder because of people like her telling stories that are best kept for the campfires.

Can Ulcerative Colitis Be Cured?

Jul16

A friend of mine, Marisa, wrote this on her blog. I have to say that used to think that removal of the disease was a cure for UC. My eyes have been opened though and I now know the truth. I can even come close to explaining it as well as Marisa does.

Can Ulcerative Colitis Be Cured?.

Book Review – The IBD Healing Plan and Recipe Book

Jun15

Here is another book review. This one is about diet and IBD. The full title is The IBD Healing Plan and Recipe Book: Using Whole Foods to Relieve Crohn’s Disease and Colitis. It was written by Christie A Korth, CHC, AADP.

So you are probably wondering just what is the book about and what makes the author a specialist on this. Well, at age 19, she was diagnosed with Crohn’s Disease. Like most of us, she went through many different diagnoses and it took 10 years to get the proper one. Again, like many of us, she then ran the gambit of meds to have none of them work. After years of suffering, she started to experiment with her diet and found that it would play a major role with her healing process.

Christie starts the book talking about IBD. From there, she goes into how nutrition helps the body. She talks about different food intolerance’s and how people with IBD may suffer from some of them like lactose intolerance, gluten intolerance, etc. By the end of the book she gives recipes that are based on what she talks about and are sensitive to the food allergies.

Overall, I found this book pretty helpful. I got a new insight into diets role with IBD. It took me a little over 20 years to see just how important diet is with IBD. I went years eating whatever I wanted. Now that I am gluten-free I have been enjoying living a symptom free life for about a year now.

Sadly, because life has been so busy lately, I haven’t had time to explore and make some of the recipes she includes with the book. They do look interesting and tasty and one day I will make them. One recipe I want to try is the Apply Rosemary Cornish Game Hen. Another recipe which might go well with the hens is the Yummy Healthy Onion Rings. I miss onion rings (they aren’t gluten-free) and this recipe is gluten-free.

Overall, I would recommend this book to anyone with IBD, especially if they are having a tough time with symptoms. She gives great insight into the disease and how food plays a part with it.

Get Your Guts in Gear 2013

Jun10

On June 7-9 I attended my first Get Your Guts in Gear ride. For anyone that doesn’t know who they are, Get Your Guts in Gear or GYGIG is a non-profit organization that raises money for IBD through bike rides. This years ride was the 10th anniversary of the New York ride.

When I first heard about the ride I thought this was something that was part of CCFA and I didn’t realize it was a separate organization. I also wasn’t to interested because I haven’t rode a bike in many many years so I knew there was no way I would be able to do a 200 mile ride. Then a friend and co-IBDer told me I can crew. The crew are the people who support the riders in a number of different ways from making sure the road is clear of debris to manning a rest stop to just cheering them on to raise their spirits. This sounded more like my style so after some thinking, I signed up.

As time went on, Marisa, the friend that told me to crew, kept telling me how much fun I would have and how it would change my life. I knew it had changed a lot for her and I didn’t know what it would hold for me. I would soon find out.

When I arrived at the site for the shuttle bus, I was the first one there. Like most things, I was the first one and I was alone. Eventually others would arrive and the first ones to come were friends that I have spoken to online and have followed in blogs, but never met. It was like a book coming to life. People I have only read about I was now meeting.

That first night was a rough one. A tropical storm was drenching us and there was no escaping the rain. One of my jobs was to help load the equipment truck so I was soaked by the end of the night. I would be the last to come back to our bunk. I would see everyone in one area chatting and getting to know one another. I was alone. wet and cold. But I was welcomed with open arms and right away I felt like part of a family.

For many of us, this was our first time with GYGIG and even the first time meeting each other. Yet when we all tried to go to bed and someone’s snoring kept us all awake, we truly were like a family as we all yelled at the snorer (who will remain nameless). What we found from this was within hours, we truly were a family.

The next two days would be rough for me. My job assignment was Camp. This entailed making sure the equipment truck was loaded and unloaded, the campsites were cleaned and nothing got left behind when we left, setting up the camp for everyone’s arrival, making sure snacks and drinks were provided, keeping morale up…ok I am getting tired again just thinking about it all. I have had problems with sleep and I seem to always be tired. My back has been hurting on and off from my degenerative disks. Overall I am a mess but this weekend, all of that went away and it was like I was 18 again. I had so much energy. I think I got it because even though it was hard work, I enjoyed doing it.

The best part of the weekend though were the people who I met. Some I had met before. Others I had spoken to online but met the first time here. Many others I was meeting for the first time ever. Not everyone on this ride had IBD but were somehow connected to it. At night, the group I hung out with would share stories about our lives and IBD. This was the first time I was with a large group of IBDers and they were all being so open with their disease. I loved it.

At the end of the weekend, I snapped a photo. It would be one of my last memories for the weekend. It was a breathtaking view of the mountain and water. It described my weekend perfectly. Wet, some ups, some downs but overall breathtaking. Some of my Camp crew dropped me off to get my bag before I left. I started this journey alone.. I left being part of a family. When I first signed up for GYGIG I only planned on doing it the one time. Now, I can’t see my life without it. It is an experience that I never want to forget and hopefully can relive it every year.

Take Steps 2013

Jun3

Yesterday I participated in the Take Steps for Crohns and Colitis which is run by CCFA. Better yet, I volunteered. Last year I was wiped out from walking so I decided this year I would help out instead. Ok, that took its toll on my body even more. Today my back and neck are achy and my feet are sore. But it was soooo worth it.

One thing I like about the walk is the location. I was helping out at the Liberty State Park walk and the views from there are breathtaking.

After I take this in I head over to my assigned area, the food tent. This year I decided to put my talents to use. I helped get donated food for the walk. I was able to get some coconut water, vitamin water, Smartwater, fruit and chips.

After we got set up, I decided to look around before it got real busy. There were tents for some drug reps (Humira, Remicade), Team Challenge sign ups, the Kids Corner with bouncy house, and the DJ. All was quiet before the storm.

As you can see from the pictures, it looked like a storm was coming but luckily, the rain held off. The wind was pretty powerful though. With the almost 90 degrees and humidity, the wind was refreshing.

At 4:00, the walkers were off for a 2.15 mile walk. When they came back that was when the real fun began. Our tent got mobbed. Aside from what I brought, we also had sandwiches, cookies, granola bars, orange juice and spring water. Pretty much everything went.

One thing I have noticed about these walks, and it disturbs me a little is that everyone chats but no one really talks about the disease …. which is why we are all here. I was talking with one of the volunteers and he asked why I was there. I mentioned I had Crohns. He said his son has Crohns and that was it. No further discussion. It really hit me that although everyone comes out to bring awareness and come together, no one really wants to talk about it still. My only conclusion is because it isn’t just the patient but friends and family there also that they don’t feel like opening up. I can understand that.

This up coming weekend is Get Your Guts in Gear. I know a lot of the volunteers that will be there. I know we will be talking about it a lot more but we will also have fun and talk about other things. 2 weeks and 2 awareness events. It is enough to tire these old bones. After the walk, I feel achy. Hate to see what next week brings. Stay tuned for a recap.