Feed Me!

I love food. Rarely during my 20 years of having Crohn’s Disease have I experienced loss of appetite and how fortunate! Without my appetite a huge drive and energy within me disappears. I cook a lot, and consider myself a pretty good cook. I eat with gusto and at ferocious speed (though I work on controlling this!). In my last post, I wrote an ode to Prednisone in which I should have mentioned how I love when I’m on Prednisone and food just tastes even better, my hunger for food is stronger and my passion for it is beastly! Thankfully, I love healthy food, or food that most would consider healthy.

When you have Crohn’s it’s hard to distinguish what is actually good for you. I have tried many diets for Crohn’s Disease and each diet has been so different from the others. When I am at my worst, I can find it so hard to prepare myself food and I second-guess everything I’m about to eat thinking that the food might harm me. I could pick up any food from my kitchen and I guarantee that some diet that I have followed at some point has listed it as a food I should avoid. When I’m like that I just wish that I could lie down and someone would come and feed me delicious food that will help to heal me. Even now, when I’m feeling healthy, I feel like I can eat anything and when I do, I don’t have any immediate symptoms, but I still wonder if I could be promoting a future flare.

I read somewhere that excessive dieting for nutritional purposes is now considered an eating disorder which is significantly on the rise. I have seen this first hand last year when my sister started doing a very strict diet for a condition that she is dealing with and she lost about 40 pounds within a couple of months and looked anorexic for a while until she started easing up on the diet. I have also been waif-like during diets and have experienced such low-weight and low-energy from lack of absorption of calories and protein from an inflamed gut and from lack of food intake.

One of the most difficult aspects of having a chronic illness has been deciphering who to trust for nutritional information. The medical community takes a one-size-fits-all approach to diet (the food pyramid) whereas the alternative health community truly believes that diet is the answer to your problems. The medical community mostly ignores diet as it is too difficult to monitor and there is very little incentive ($$$) to explore nutrition as medicine. In contrast, many in the natural health community base their recommendations on assumptions. They believe that foods that are harmful or helpful for other conditions must be harmful or helpful to Crohn’s patients. I have spent way too much money just to have naturopaths tell me that I need to do an anti-candida diet and to take all dairy and gluten out of my diet. They recommend eating lots of whole grains and leafy greens, which I have since found out are terrible for me. If I were to go in complaining of headaches, I would probably be given the same recommendation.

As I am and getting older and wiser, I am starting to feel I have more of an understanding of what is right for me. I am cynical of both the medical community and the natural health community and I am learning to take what I need from both. I generally follow a low-fat, low-roughage, low-sugar, low- dairy diet. Low seems to work for me a lot better than no and allows me to get adequate calories. Since I am not referring as much to outside sources for food information, I find myself feeling less guilty about what I eat and am actually getting better at controlling what I eat all the time rather than going through cycles of eliminating and binging. Slowly I am learning that when you don’t know who to trust, trust yourself.

Ode to Prednisone!

My dear prednisone, you have such a horrible reputation and you can be so bad for me but how I love you so! I am totally off of you as of today, but I have positive memories of our time together! I was so reluctant to take you back when my doctor recently prescribed you for I felt like this was a real step backward. You are the drug that they have always been prescribing for Crohn’s disease but their preference is for other fancier more high-tech drugs since you're known to be so bothersome and debilitating when you people spend too much time with you. When I left you for Humira, I felt that my days with you were behind me. I wasn’t so thrilled about this new drug but I didn’t have much of a choice and felt that I would go on it for a while to let the tissue heal and then go off medication altogether. It has now been three years that I’ve been with Humira and my plan didn’t quite pan out. While the Humira has really improved my quality of life and probably helped me avoid surgery, it just hasn’t done enough and I have an area of my bowel that is just unresponsive to it. But you! You know how to reach deep into my bowels and soothe me in ways no other drug can!

After my recent appointment at the hospital, the words uttered by my G.I. doctor “persistent inflammation” kept playing in my head like a broken record all night long. I woke up the next morning and decided that I would take the plunge and take you back. As my doctor said, taking you and Humira at the same is something I haven’t tried before. Within days I noticed a difference. The second and third week was the best, you settled things down and I got that high that I always get when I’m with you, I would lie in bed at night and feel like I could jump up and go for a run outside. With only a couple of hours sleep I woke up feeling fresh and energized. Those were good times, prednisone!

As I started distancing myself from you more and more, I felt healthy and prepared for life without you. I miss the energy boost that you gave me, but I always knew that it was a fleeting. What seemed like a step backwards, turned out to be a leap forward. I feel that I am in remission thanks to you and I am prepared to take you back again if I have to but hopefully we won’t be seeing each other for a while, it’s better that way.