Let’s all help fellow IBD Advocate Dennis Frohlich


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


Karrie Jocobs

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


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


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.Weight

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”


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.

Book Review – The IBD Healing Plan and Recipe Book


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.

The IBD Healing Book

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.