Be Cautious
No one likes to think of himself/herself as gullible, as easy prey. We like it even less when people actually succeed in “taking us for a ride”; it’s embarrassing and erodes our self-confidence. It also turns us into skeptics which may cause us to miss out on real, genuine opportunities. I’m sure the majority of you reading this think you’re too smart or savvy to fall for a scam; I was just like you. I thought there was no way anyone could fool me, that is, until someone did. Why, you may be wondering, am I rambling on about something seemingly irrelevant to my Crohn’s experience? For those of you read my last post ( April 25th), you know to what I’m referring ~ the “honey pharmacist”. While my financial loss was small, my self-confidence and optimistic nature, and yes my ego, took a huge hit, also my belief in my fellow man became tainted. Maybe I was just naive or too trusting but I didn’t think someone in that position, who knew what I was going through, would prey on my vulnerabilities. I’m happy to say that I did learn a valuable lesson and came to the realization that people like that is best left to karma. I acted out of hope and desperation, and that’s on me. I’m advising my fellow crohnies to beware of people who profess to have the solutions to your problems, health or otherwise especially if there's a cost benefit for them. You don’t have to become a hardcore skeptic, just tread carefully, ask for the opinions of people you actually trust. You are the one with a lot to lose in many ways, so ultimately it should be your decision. Don’t let anyone, trusted or otherwise, pressure you into trying something because it supposedly worked for someone else. I'm talking specifically about alternative treatments for your disease.
Be Gracious
Most of us like to play doctor from time to time, and for those of you who went there, get your minds out of the gutter! I simply meant, we recommend or suggest remedies or treatments for people’s ailments, be it the common cold, migraines, insomnia, or even more serious conditions. In return, you'll also receive lots of advice and suggestions from well-intentioned people on things and methods to try to help with your Crohn’s. But since most “lay” people aren't familiar with the complexities and individualized nature of this disease, a lot of the advice may go unheeded. That’s not to say you shouldn’t graciously acknowledge and accept said advice because, one, it shows that people care about you and are looking out for ways to help you, and two, you never know when you might learn something that could be helpful or useful. You don’t want to hurt people’s feelings by ignoring or disregarding well-meaning offerings. And whatever you do, please don’t tell people who are trying to help, that they don’t know what you’re going through, of course they don’t, and you too should not presume to know what another Crohn’s patient is going through either because his/her experience may be very different from yours; symptoms vary greatly and what works for one may have an adverse effect on another. I’ve met some patients who suffered from eye infections, skin conditions, gallstones, and others from pancreatitis. In my twenty seven years with this disease, I’ve had none of these so I can’t relate to their experiences.
Alternative treatments
I've found that it’s always good to keep an open mind. Also, sometimes thinking outside the box can be a good thing. However, the majority of doctors and medical professionals who’ve treated me over the years have been very conservative in their outlook, with alternative non-traditional treatments not being particularly encouraged. I guess that’s because they believe many of these methods haven’t been properly tested or scientifically proven, and any number of things can go wrong with an unpredictable disease like Crohn’s; they themselves aren’t sure how exactly this disease works! Also, don’t forget the scam factor, these doctors know that there are people looking to make a quick buck off the sick and vulnerable. So, not wanting to “rock the boat” so to speak, I never ventured too far off the conventional path myself. I was too afraid of the consequences if something went wrong, particularly with my track record ~ you know, me and Murphy’s Law! I’ll share with you some of the things that I did try in my quest for relief without actually interrupting my medical treatment. First off, I went the Naturopathic route; I had a series of acupuncture treatments for pain management. I knew this was no cure and strictly superficial but I was in so much pain I felt any relief at all would be welcome. After about eight sessions at one hundred dollars a pop, I realized I was not getting any relief. The practitioner believed I was too far gone for this method to work; it was like taking a tylenol while undergoing surgery. Or maybe he was just a quack! Next I tried a regiment of herbal, made-to-order, pills. This too didn’t work and I was told that was probably because I refused to stop taking my regular meds. Maybe, maybe not, who knows ? Next came a doozy! - the Elimination diet, which in hindsight was a moment of insanity! What was I thinking?
The Elimination Diet
This travesty needs a section of its own! Just to be clear, this is from MY perspective and from MY personal experience. There are very strong advocates of this, so it's for you to decide whether this is for you or not. I do believe that this can be very helpful for people with food allergies, sensitivities, and intolerances, for Crohn’s, not so much ~ in fact, not at all! There are many different ones but the basic principle is the same: over a (approximately) thirty day period, you eliminate as many foods as you can, the more restrictive the better, starting with dairy, eggs, anything with gluten (all grains), soy, legumes, nuts, seeds, potatoes, dark-skinned vegetables (like eggplant, tomatoes), citrus fruit, corn, pork, beef, chicken, coffee, tea, and sugar. What’s left you might ask? Well, you can eat all the other fruit and vegetables not mentioned, as well as fish and turkey. Oh! And you need to drink between two to four litres of water a day. Water is always good. After you’ve completed this elimination process, you have to reintroduce one food at a time, observe your reaction, then move on to another. It’s recommended that you keep a journal to track your reactions etc. You should complete this over a four to six week period. You’re told that this process is a small investment of your time with huge long term rewards. Small??? Are you kidding me? When you’re fighting a painful, disruptive, and seemingly losing battle everyday, this is not a small undertaking! I was already barely eating anything, and following this together with the restrictions of a low-residue diet meant all I could basically eat for over a month was fish and turkey, and drink water! How was this supposed to help me, especially if I ended up lifeless at the end of this exercise??? So of course I abandoned this madness forthwith and sought the advice of a very reputable, registered Dietitian who specialized in people with inflammatory bowel diseases, which is what I should have done in the first place but instead chose to listen to people who swore to the effectiveness of this "treatment".
The Right Way
As I've said numerous times, Crohn’s is a very individualized disease and so is one's diet; there is no one set diet for everyone. It has been scientifically established that food does not cause or trigger this disease, but when it is active, certain foods can make the symptoms worse. These foods differ from patient to patient so there’s some trial and error involved in figuring out what causes YOU grief. Like many Crohn’s patients, there are times when you’d just rather not eat at all than to do so and suffer tremendously after. While you can skip meals sometimes, supplementing with things like Ensure and Boost, you’re warned about doing so regularly. For one thing, your bodies need certain nutrients and calories to help in the healing process. And while you may think, what’s the point, it’s only going to go down the toilet (literally) any way, that’s not really true, some does get absorbed. For another, you will end up with a host of deficiencies that will just add to your problems. I should know, it happened to me. So here are some of my Dietitian’s advice and recommendations (for me, but can be helpful to others as well):-
Portion control - Eat five to six small meals instead of three regular/large ones. (And a couple of snacks in between). It’s easier on the digestive system, plus your body will absorb more nutrients that way.
Try to include as many of the five food groups as you can in each meal, and moderation is the key.
Satisfy your cravings responsibly. For example, I love nuts but it’s on my no-no list. She told me to eat a few very slowly, chewing properly and that will satisfy the urge without causing any problems. This should prevent me from going nuts (pun intended) one day and gorging myself!
Eat bananas. Contrary to popular belief, bananas do not cause diarrhoea, in fact, it helps it. It’s a binding food, plus it’s rich in potassium which is so important for your heart and muscle health and regulating your body’s fluid balance.
For protein ~ eat poultry, fish, smooth peanut butter, eggs, milk, and cheese (if not lactose intolerant). The harder the cheese, the higher the protein per serving.
For carbs ~ white bread, rice, skinless potatoes, crackers, plain cereal, strangely enough, oat bran, and oatmeal are all acceptable.
Applesauce, Gatorade, fruit juices and smoothies are also good, as well as coffee and tea in moderation.
Other than bananas, papaya, and avocados, no raw fruit or vegetables, but any and all canned ones, except for corn. NOBODY can fully digest corn! I guess the forbidden factor is why I love corn so much and cheat sometimes, especially with popcorn (and I pay for it after), but oh well! I also cheat with the occasional fruit, especially strawberries and oranges, sometimes pineapple which is a BIG no-no because of the stringy, fibrous texture! But who can resist?
Spicy and greasy foods should also be avoided as much as possible. I'm sure you can imagine how well I manage that! I try, I really do, but I'm only human and I want to be perfectly honest so when you stray, and you will, you won't feel too badly. Just be prepared to face the consequences!
Sounds much better than any Elimination Diet, doesn’t it? Yeah, I thought so too. There you have it, my very brief but safe (mostly) effort to seek help outside my traditional treatment, none of which really worked for me. What disturbs me though is that I’ve read about people who believe they’ve been “cured” of their Crohn’s because their symptoms disappeared when they eliminated certain foods from their diet, and they’re propagating said diet as a cure. Their proof is that when they reintroduced that particular food, their symptoms returned. Well then you’re not cured! If you were, your symptoms wouldn’t return regardless to what you ate! What you’ve been lucky to find is a diet that works specifically for you, that keeps your disease under control. And that’s great! I just don’t want my fellow crohnies to get false hope that there are people out there who’ve found a cure. They haven’t. All I was hoping for with these alternative treatments was some relief, but I found none. Just as I’d hoped for with my high-dose IV steroid treatment when I was hospitalized that second time when I had my flare-up. It did work at first, then things took an unexpected turn.The story of my life!