.:pills aren’t always the answer:.

i’m not sure whether or not i should be really angry or really excited. mostly, i’m pretty ecstatic; the anger comes when i think about how long i’ve had UC and not tried to do anything about it other than take the multitude of pills my various doctors have prescribed me.

don’t get me wrong; i don’t think i’ve CURED anything. it’s an incurable disease that i will be living with for the rest of my life unless my body somehow sees fit to just randomly expel it from itself. however, i think i’ve figured out how to control this thing much better than i ever have before. i almost feel somewhat normal, if you can believe that.

i’m writing this because, just on the chance that someone happens to stumble across this blog that has the same condition, i’d like for them to have something else they can try. and let me just throw out the following caveat…

everyone’s body is going to be different and react differently. period. i don’t want to set any kind of expectations that this will work for everyone. but i think that this provides an excellent basis on which to start.

also, i cannot take any credit for coming up with this. once upon a time, there was a woman named elaine gottschall who originally came up with the basis for this. she created something called ‘the specific carbohydrate diet’, and she wrote a book based on that called ‘breaking the vicious cycle’. all i did was follow the advice from a random person who had responded to a post i made awhile back and then start doing atkins because i wanted to lose a little bit of weight. i also wanted to experiment with a theory i had. turns out that my theory happened to be based on something miss gottschall already figured out. but that’s alright. i don’t quite do everything as she outlines it, and i feel like a new person.

again, i’m not going to tell you that this is the cure; everyone’s body is going to work differently. but i think this is a step in the right direction of fending off a really horrible disease.

so enough precursory stuff; let’s get into how this came about and, more important, what exactly it is i’m doing.

.:most doctors suck:.

yep. they mean well. but let me throw a few things out there:

1. doctors are in the business of making money. this conflicts with the idea of keeping a patient healthy. if you are sick, you are making doctor visits. and more visits = more money. and not only more money for the doctor…but for the pharma industry as well, because i’m sure you’ve noticed that when you have an ailment, the first thing that happens is the ’scrip pad comes out and you magically have a new bottle of pills.
2. doctors have sales people come from pharma companies almost every day. and these lovely sales people bring in full lunches for the doctors and their staff. they also bring a number of other little marketing gizmos.
3. i’m going to take a wild guess and say that if a doctor decides to prescribe a certain kind of pharma, they probably get some kind of ‘reward’ for doing so from that company through the sales rep.

i wrote a pretty extensive ‘conspiracy theory’ post awhile back about the pharma industry. but just to summarize…a healthy person does not make for a profitable business when it comes to the world of doctors and the pharma industry. and we’re trained to think that whatever the doc says, well, that must be the way it is. so you had better do what they say, or else…

for example, let’s take my most recent doctor. actually…no…let’s take all of my doctors. i’ve been prescribed all of the different ‘maintenance’ drugs for UC. i’m on a rather large dose of colazal right now (12 pills per day), and have been over the last three years. i’ve also been given the asazan, which is a heavy immunosuppressant, and high doses of prednisone (50mg was my most recent dosage). there have been a couple of other little ‘drug trials’ that i’ve gone through. none of these things have worked for me.

during the entire time, all of my doctors have said the exact same thing: changing your diet will not help. as a matter of fact, my recent doctor told me that they’ve been treating UC the same way for the past 30 years with no changes, and none of them involved changing anything about the way you eat.

now…let’s pause for a second. this is a digestive disease. while the definite cause is unknown, it is thought that there are some bacteria (out of the millions/billions) in your digestive tract that is somehow causing your immune system to turn on full force and attack…causing ulcerations and bleeding in your large intestine. of course, when you’re in flare, the food you eat can exacerbate the the conditions.

ask yourself this: how is it even possible to suggest that a digestive disease cannot benefit from a change in diet? i’m no doctor, and i don’t want to give the impression that i’m some expert…but really…that just seems like it makes sense to me.

continuing on, the last time i was in the doctor’s office was probably february, and WOW was i EVER in a terrible place. i had started taking 40mg of prednisone previously, and the reason i had come in was because the large dosage that had worked in the past was not working anymore. it was having no effect. i needed to figure out something else to do.

it was there my doctor said that i could try out remicade or i could/should do the surgery (i.e. remove my large intestine). if the remicade didn’t work, then i should DEFINITELY do the surgery.

i went home defeated, especially after i started reading about how expensive remicade is ($2000.00 every time you have to do it…and it didn’t sound like my insurance would cover it) and how many horrific side effects it has. it basically sounded like i would be worse off if i did that. and i knew that i could not keep dosing myself with higher MGs of prednisone. my doctor actually said that he feared the damage to my bones that would occur over the next 20 years. i would basically be a walking glass.

i was pretty depressed, and i posted about all of this here. and, as i said above, someone wrote to me and told me about what they’ve done to help keep it in remission. i decided that i’d go ahead and do it. after all, what could it hurt? that was the first change i made to my diet.

.:the first change:.

i’ll keep this simple. i’m just going to tell you what exactly it is that this consists of:

1. eliminate soda immediately. no diet soda. no regular soda. no clear soda. don’t even think about it.
2. eliminate anything with carbonation in it immediately. even soda water. this also means no beer. period.
3. eliminate dairy in its more pure forms. in other words, don’t drink milk or eat ice cream. if you have to use some kind of milk, use lactaid. but only use in small amounts.
4. eliminate all alcohol use.
5. eliminate eating any kinds of nuts and beans. nuts can hurt you pretty badly when you’re in flare. beans…well…i probably need not explain…
6. eliminate eating any kind of hot stuff…hot sauce, chilies, etc.
7. eliminate fried food immediately. no french fries, no fried chicken…you get it. none.
8. absolutely NO popcorn. popcorn is horrific for your digestive system.
9. no bread with whole grains or with any kinds of seeds.

in addition to the ‘no’s’ above, i was also drinking more water than i’ve ever drank before…probably about 60 oz. every day. and i was also taking 6 aloe pills a day…2 in the morning, 2 for lunch, and 2 with dinner along with my colazal. that’s where you’re going to want to start.

.:the second change:.

so i did all of the above, and within about a month, i started feeling better. two things that you need to know:

1. i was still taking prednisone, but starting to lower my dosage from 50 to 30 within that first month.
2. i was also taking hydrocodone. i do not recommend this even though i believe it helped me out. i simply do not know for sure. however, it did two things for me that i observed. hydrocodone helped relieve me of the cramping and general ’stomach’ pain and it helped me not feel the normal anxiety i felt about being in flare. it helped me not think about it so much. but you must be aware that hydrocodone is highly addictive. it’s basically vicodin. i had access to it through a friend who also had UC (he had the surgery), and he suggested that i try it. i made a promise to myself that i would not continually take it. i took it for two months, weaned my body off of it, and walked away from it. i was able to do that because i do not have an addictive personality.

the second part of this i kind of stumbled upon by accident.

i was pissed because the massive amount of prednisone i was taking made me gain about 22 pounds over the past year or so. at this point, i was at the heaviest i have ever been at 172. i had puffy cheeks and my clothes weren’t exactly comfortable to wear. so i decided that i’d give atkins diet a try.

when i started doing atkins, after a month, i had not only lost about 12 pounds, but i noticed that i was feeling even better than i was before. that was when it clicked…

now let’s pause again. i’m no doctor, but i’ve pretty much come the following conclusion: sugar is poison to a person with ulcerative colitis.

this statement is really based on nothing other than my own general thinking. granted, i have read a lot of various articles saying that sugar is bad for you…but you should not take my word as final. you should do the research yourself.

sugar is poison to a person with colitis because if there is bacteria in your gut that is ‘bad’, it has to be feeding on something. most people rely on sugar to give their bodies the energy they need, and my assumption is that sugar is what that bacteria is feeding on. therefore, doesn’t it make sense that if you’re getting rid of that bacteria’s food source, chances are that you’re going to eliminate the problem?

instead of me telling you what not to eat, i’m going to tell you what i do eat. keep in mind that i’m still experimenting. i also want you to keep in mind that i don’t consider myself ‘cured’; rather, i would say i’m ‘much better off than before’. by that, i mean i’m experiencing no terrible stomach cramps, no multiple trips to the bathroom, no urgent bathroom runs directly after i eat…and most importantly…i’m at 2 1/2 mg. of prednisone…AND getting ready to stop that completely.

here’s what i am eating/drinking currently:

1. any kind of meat: chicken, fish, pork, beef
2. just about any kind of vegetables, though in moderation. i know that sounds weird, and this may change for me after awhile. vegetables have complex carbs, which are good carbs. but things are working well for me, and i’m hesitant to change that! anyhow, broccoli, carrots, lettuce, cucumbers, squash, etc. however, DO NOT eat anything with starch. for example, no corn or potatoes.
3. almonds, cashews, peanuts and sunflower seeds although i eat them in moderation. i know i said don’t eat them above, but i feel like these are probably safe after you are out of flare. the problem with nuts is that they are very harsh on the ulcerations that are in your colon when you’re in flare. when i started feeling better, i started with almonds and only a little bit at a time. when i didn’t feel like i was affected, i started eating more…but i don’t anymore than about 30 of them in a day. same goes for the others…i only eat them in heavy moderation.
4. low-carb bread: you must stop eating white bread immediately. it’s empty calories AND it’s choc full of processed sugar. again, in moderating how many seeds/grains you’re taking in, i’d opt for something without that kind of stuff baked in. i eat nature’s own low carb bread, but anything that is similar that isn’t white bread will do (i think).
5. eggs: you can eat ‘em any way.
6. cheese, but in moderation. in other words, don’t make it a meal… :). it’s probably safe to say that you can use a slice on your sandwich.
7. splenda-sweetened jelly: i use polaner all-fruit, specifically grape and strawberry, but they have several different kinds. it’s low-carb.
8. natural peanut butter, just as long as it doesn’t have a ton of sugar in it. it’s naturally low-carb. i buy the skippy all-natural
9. atkins or other low-carb stuff, such as atkins snack bars or shakes, though you should only eat/drink them in moderation. they have lots of sugar alcohol in them, and that stuff can cause an upset stomach.
10. red wine/mich lite, and again, i said complete elimination above. you should eliminate them at first very strictly. only when you start feeling better should you even try to experiment with these. and even then, only in moderation. you can drink red-wine because while the fermenting process starts with sugar, the whole process actually removes a good portion of it. for example, depending on what kind of wine you get, it should only have about 4g of carbs in it from sugar content. same with mich light…4g of carbs.
11. miscellaneous stuff, like splenda, butter, coffee, regular coffee creamer (not low-fat), water (plain or flavored, as long as it doesn’t have any sugar in it and isn’t carbonated) are all fine.

the most important thing to note here is that you absolutely positively must NOT cheat. i know you might feel the urgency to do so, but trust me when i tell you that you will not fix anything at all, you will go back to square one, if you cheat. when you DO introduce something new into your diet that you want to experiment with, be sure you write it down. as soon as you start feeling bad, you know you’ll have to eliminate it. for example, i was buying low-carb ice cream there for a little while and figured out that if i overeat it, it really makes my stomach a bad place the next day. of course, this is due to the lactose i’m sure…but i also think it has something to do with the sugar alcohol content. it didn’t send me into flare or anything, but i did find that moderating fixed the problem.

again, i can’t express to you how important it is not to cheat. you are only harming your chances of this working for you. and believe me…i know how hard it is. for example, i didn’t think there was any way in hell that i was going to be able to eliminate pasta and bread. i’m italian, for god’s sake! but after you put your body through bootcamp for that first month and train it not to rely on sugar as its source for energy, it becomes a non-point.

cereal was another one. it’s easy to throw down a bowl of cereal in the morning. but it’s just as easy to fix yourself a couple of pieces of low-carb toast or eat some low-carb yogurt (dannon-light and fit carb control…it’s great!).

you can do this.

i also started trying a product called mona vie. i wrote about that in a previous blog post. you’re welcome to try this too. drop me a line and i’m happy to send you a bottle. the long and the short of it is that it can’t hurt you. it’s made from a berry called acai from brazil. it’s considered a ’super food’ and it has mild anti-inflammatory properties. i was skeptical when a friend of mine showed it to me, but i tried it and while i don’t necessarily know for certain that it’s doing anything for the condition, it’s sure helping out my general energy levels.

i believe that should be it. i’m curious to know if this happens to help anyone out. you can let me know in the responses here as to what is working for you. likewise, if you have anything to add, that is always welcome. as i said previously, everyone’s body is different and will react in different ways.

good luck!

.a.