October « 2013 « A Guy With Crohn's

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.

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.