The sections of this post are given below:
- (1) Crohn’s Disease: A survivor’s story (introduction)
- (2) Crohn’s Disease: A survivor’s story (diagnosis at an early age)
- (3) Crohn’s Disease: A survivor’s story (a recipe for life)
I have learned from my continuing battle with the aftermath of AML, a bone marrow transplant, Graft versus Host disease and now, avascular necrosis brought about by high dose Prednisone, that strength can be found in the most ordinary places. My daughter’s laugh, my wife’s smile, the knowing nod that my oldest daughter gives me when we can’t find the car keys, all of these things give me strength and joy. They truly are the stuff of life and they bring me joy and strength.
Continuing with the post “Crohn’s Disease: A survivor’s recipe for life (diagnosis at an early age)” http://giftsfromthetrainstation.net/?p=270, this entry will focus on Doug’s methods for every day living and how he has coped with this awful illness….
“I’m 54 and have had this dreadful disease for almost 30 years. I have learned a lot. Crohn’s disease is a severe condition and I take severe steps to control it. If I didn’t, it would control me. Even so, even with all the controls in place, the emotional toll of this disease is significant. Sometimes I cry every day. I find that crying is a good thing, it releases my emotions and helps me deal with the daily impact of Crohn’s.
Nowadays, I control my flare-ups with emotional balance and intense scrutiny of the food that I eat. I have it down to a science. In general, most foods are like poison to us. Learning to accept that is the key to controlling our Crohn’s. Here’s the recipe I have developed over the course of 30 years. It works for me, I am not flare-up free, but I find that those events are fewer and farther between, and I recover more quickly from each one. To me, it’s a vast improvement over the early years when Crohn’s controlled me.”
“Most people don’t get it and I’ll hear the occasional ”Chicken again today, Doug?” Whatever. I am very strict with my diet, I don’t allow variation or experimentation. I do the same things and eat the very same things every single day.I do this so that I can function with some sort of normal life, or what I have come to accept as normal. I eat to live, not to enjoy.
Also, I eat small meals, like 1/2 sandwich at a time, several times a day. Think of it as minimizing the pressure on your gut. If I eat a big meal, i suffer.
Eggs: The whites are ok. But I DO NOT eat the yolk. If I eat the yolk, I am sick for days. So sick that I can not go anywhere. I look for egg yolks in the foods that I eat and really try to avoid them.
Fruits & Vegetables: I have not really eaten fruits or vegetables in over 30 years. But, I have and continue to eat very small amounts of melon and brocoli. That’s it.
Juices and Sauces: I avoid fruit juices and tomato sauces. I find that anything that is even slightly acidic will flare me up.
Meats: I avoid red meats. They are simply risky since I can not judge the amount of fat. For animal-based protein, I rely upon chicken. I eats lots of chicken. Lots of baked and boiled and roasted chicken. Bauk Bauk Bauk
Nuts: Nuts, for the most part, don’t bother me.
Shellfish: NONE! Any form of shellfish makes me sick for weeks. And, as I have found out, there are shellfish byproducts in things including some medicines Taking even a small amount of these meds will flare me up, and it was a mystery until I figured out that there was a little bit of a shellfish byproduct. In an addendum, I will try to list the meds that cause me flare ups.
Vitamins: I take a solid multivitamin every day. For most of us nutrients are not in abundance in the foods we eat so I supplement. This is very important.”
“I have found that stress is a killer. A long time ago, I thought that “Stress is a killer” was just a trite expression, but it is not. It is real. I take extreme steps to remove myself from people who hurt me emotionally. I find that I need emotional stability and balance. Without it, my life is miserable and my Crohn’s goes out of control.
Over the years, I have come to believe that there are people out there that are just evil. I avoid them at all cost. Instead, for me, it’s important to find things that bring me joy and happiness, not negativity or frustration. Anger, real red-eyed, fist clenched anger is another killer. It will flare me up within hours.
I consider that Crohn’s is intimately tied to my emotions. It must be why I cry a lot. But being stuck in a very emotional environment is also not good. I need balance. I need work-life balance. My recommendation is to find a sympathetic employer. A good employer will work with you. If they don’t, find a new one. I also find, even in the bustling sixth largest city in the USA, that traffic is an avoidable frustration. I leave for work in the early hours, work a full day, and leave for home in the afternoon before rush hour. It’s more efficient and it is relatively stress-free. It works for me. It will help you, too.
“I work out religiously. I work out every day. And I work out hard. I lift weights, use bands and ride dozens of hard miles on my stationary bicycle. I do this every morning while everyone else is asleep. It’s my time to prepare my mind and body for the day. And i find that even with everything I do to control my Crohn’s, I do flare up. But, when I do, I have prepared my body both physically and mentally for the challenge and things resolve much quicker than when I was young. And the exercise, just like everyone says, keeps my emotions in check and I don’t get depressed as I did as a youngster. Exercise is critical for me.”
I live like this and I am happy that there is no choice for me. As I got older I became spiritual. It helps me to deal and to let go of things that will make me sick. I have a beautiful wife that understands my needs. She is also an RN. We have three beautiful children that give me joy every day.
I haven’t given up, I have adjusted.
I really hope you find something useful in these words. I am at a point in my life and disease where I can offer hope to those newly diagnosed and even some veterans like myself.
Many thanks to Doug who has shared this story with me and is sincere in his hope that these words will help both the newly diagnosed as well as veterans of Crohn’s like himself.