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02-01-2013, 01:58 AM   #1
wacko847
 
Join Date: Jan 2007
Location: Arlington hts, Illinois
There is hope!

I haven't visited this forum for quite sometime, my apologies. I have been feeling great for the past 3 (almost 4 years) so I figured it's time for me to share my story. Besides, judging by the sheer number of individuals "Viewing" in each of the topics I think there are many individuals who are still searching for something to make this pain stop. Here I go........

I was first diagnosed at the age of 16, I'm 27 now, and at first the doctors had no clue what was wrong with me. Constant diarrhea, blood, pain, weight loss, fatigue, faint spells, hair loss, etc. After hopping between several gastros I had my first colonoscopy and planted with the diagnosis. Needless to say insurance companies dont like me.

To the best of my knowledge pentasa was the first medication which did very little at which point Imuran was quickly added. Needless to say, at this point I still maintained my destructive lifestyle of alcohol, junk food, drugs, etc. I guess I craved normality but now I know it was simple denial and outright laziness. Predisone came next and with that so did the acne, moonface, nausea, and let's not forget the voices I heard when the dosage surpassed 40mg. If you ever want take a ride on the loony bus and experience schizophrenia increase your pred. Once again the doctors were, in all their stunted wisdom, taking turns testing their meds hoping something would stick. I guess I don't blame them, thats how they have been trained. Finally, came remicade and then humira, and for those of you "Not" in the know type are basically the last "Type" of drug currently being offered for crohn's and such. But anyways, the remicade worked for a little bit maybe 7-10 months which my symptoms went from a 8 to a 4. In other words, I wasn't bleeding and the cramping had decreased significantly. However, after those 10 months my body began to develop antibodies for the drug and I builded a resistance. Shit hit the fan once again. By this time I am 22-23 years old senior year in college getting ready to attend graduate school when my gastro says "That's it, we need to remove your colon". My next response was a simple "Go F*CK yourself" as I walked out his office.

Throughout the years I have been "adjusting" my diet much like you guys are/were. No milk, spicy foods, gluten, etc we all know the drill. Needless to say every couple of months I would be eliminating new foods or trying new diets. I have literarily tried every single diet prescribed for crohn's and IBD. However, I have always known that diet was the key to solving this problem. Some foods like milk or anything from milk always gave me issues. Other foods were a little harder to distinguish because with active inflammation EVERYTHING caused more pain. But remember that day I told my gastro to go blank himself? Well that day something changed and I began to read about crohn's and about alternative solutions, in particular diets. I actually started to believe that this can be cured, this wasn't some lifelong infliction from which I had no escape. Here's what I discovered.


IF YOU DONT CARE ABOUT MY STORY START READING HERE

First and foremost, forget about some magical pill thats going to make all your symptoms disappear. This process takes years to reverse.
Drumrolllllllllllllllllllllll................. We have a messed up flora in our guts. In other words, our probiotics are out of wack and no taking copious amount of probiotics will not solve the problem. Our guts are home to literarily billions maybe trillions of different bacteria. Some help us digest food, some help us with our immune system, hell some produce vitamin K. However, there are also the bad guys, E. coli, candida, etc, which are usually kept in check by our beneficial flora. However, our flora is in the wrong ratio or better yet, there are more bad guys than good guys. I'm sure a lot of you known the pain of taking a probiotic and getting more cramping pain and worse diarrhea.

First, and I hope you have insurance, get a comprehensive stool test done. I personally use Genova Diagnostics but thats up to you. If you're not sure which test to get just order the most expensive stool test that way you'll cover all your basis. Don't forget to get a parasite test as well. Once you've scooped and trotted through your mess call your local fedex man for delivery. You can wait for the results but let me spare you the anxiety, you have an overgrowth of a few bacteria and yeast/candida. Now don't go doing something dumb like getting antibiotics to "Cure" your bacterial infection because you'll just dig a deeper grave for yourself. Antibiotics kill all bacterial, even the good guys.

Now, go through your fridge, pantry, cookie jar and that place where you hide the Oreos from the kids or husband. What you're looking for is anything that has sugar or flour this includes any type of grain gluten free or not. Toss it! Forget coffee, tea, fruits of any kind, nuts, beans, soda, etc. Basically your diet for the next few years will consist of vegetables, fish and water. UMMMMMMMMMMM. Google candida diets but from my experience even those diets tend include foods which will just inhibit healing. So once again vegetables, fish and water. When it comes to veggies you need to stay away from heavy starches which include potatoes, carrots, etc. Google it. If you have ever been addicted to heroin you might have an idea of what you're about to go through once you've eliminated those foods. I ate nothing but steamed broccoli, cauliflower, zucchini, peppers, Brussels sprouts, asparagus, and poached fish. This diet is for the candida which you'll realize is the main culprit for this thing we call crohn's. I would actually venture so far to say that crohn's doesn't exist but it's a combination of yeast, parasites and wacky bacterial flora. I would suggest a good multivitamin, digestive enzymes, HCL with every meal.

Now that you have you diet in place and trust me you'll quit a dozen of times before the symptoms really kick you in the butt. Anyways, the next thing is nystatin. Nystatin is a drug which destroys candida on contact and is not absorbed into the blood stream. All the other drugs available for yeast get absorbed into our blood and are very toxic to our livers. Speaking of our livers, do yourself a favor and get your liver enzymes checked. I wouldn't be surprised they are elevated. Now, if you've been on the diet for a while and you've instituted nystatin your symptoms should get better. However, you have to keep to this diet!!! Candida is a tricky little bastard as it will adapt and become resistant to the meds you're using to kill it. You have to cycle your meds and KEEP TO THE DIET. Once your inflammation has decreased start eating raw foods but once again no sugar, starches, flour, etc. Check everything for sugar content and yes that include dextrose, fructose, etc. I even got a food allergy and sensitivity tests done just to be sure I wasn't eating something that would bring my inflammation back.

Now you can start introducing probiotics, I went 1 Billion for a few days, then 2 Billions and so on. Go ahead take 30 Billion and see what happens. What I just described will take months to do and even when your symptoms are in check you still need to keep a strict diet, rotate yeast meds (grapefruit seed extract, caprylic acid, olive-leaf extract, oregano oil, etc ever 2 weeks). Keep this in mind, it's not the drugs that are helping the most it's the diet. IF you go off the diet your symptoms will come back regardless of how much meds you're taking.

Currently, I am still on a strict diet, rotating meds, probiotics, vit D (10000), vit B, multivitamin, HCL (helps with digestion and bloating), digestive enzymes. I have been symptom free for almost 3 years. I'm sure someone will say this doesn't work, or we're different, blah blah blah blah. At this moment, I have 3 other individuals who have followed this protocol and are crohn's free.

Of course legally, I dont want to tell you what to do and what to take but I simply described my experience with this horrid illness. Goodluck! I'm sure I'm forgetting something little detail but if you have any questions HOLLA!!
02-01-2013, 02:00 AM   #2
wacko847
 
Join Date: Jan 2007
Location: Arlington hts, Illinois
I forgot to talk about juicing. If you can stomach vegetables juices go right ahead but once again don't add any fruits or carrots. Even low sugar fruits like strawberries, or blue berries will feed the yeast.
02-01-2013, 06:16 AM   #3
hugh
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Good on ya, that's way stricter than my diet.
Interesting to see what works, and the ones that work all tend to be aimed at gut integrity and flora
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02-01-2013, 08:17 AM   #4
Charleigh
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It sounds similar to SCD, except SCD allow fruits. E is doing great on the SCD. We only recently began to add in the probiotics (acidophilus only) and I am honestly surprised how much it increased his health. I thought he was already doing good

These sort of diets are tough. For too many people food is an idol and a first love. They can't give it up even if it means they gain remission. Your comparison to heroine is spot on.

If you don't mind, I have a few questions.

Is Nystatin a prescribed medication or is there a natural form? How did you get your doctor to prescribe?
I have researched digestive enzymes a few times, but there are just so many recommendations ..... any preferences?

Thanks for sharing
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02-01-2013, 08:21 AM   #5
UnXmas
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I'm glad to hear you've managed so well through diet. I have a question though.

Basically your diet for the next few years will consist of vegetables, fish and water. UMMMMMMMMMMM. Google candida diets but from my experience even those diets tend include foods which will just inhibit healing. So once again vegetables, fish and water. When it comes to veggies you need to stay away from heavy starches which include potatoes, carrots, etc. Google it. If you have ever been addicted to heroin you might have an idea of what you're about to go through once you've eliminated those foods. I ate nothing but steamed broccoli, cauliflower, zucchini, peppers, Brussels sprouts, asparagus, and poached fish.
How do you manage to eat enough to maintain weight when you are eating only these foods? Do you have to be overweight to start with so that it won't matter when you lose?
02-01-2013, 09:00 AM   #6
wacko847
 
Join Date: Jan 2007
Location: Arlington hts, Illinois
This was by far the most difficult thing I has ever done. You have no clue how addicted we are to sugar and bread. Go ahead remove all sugar, bread, coffee from your diet for a day and your hands will shake.

Nystatin is prescribed by a doctor and you'll most likely have to get it from a compound pharmacy. It isn't that expensive, around $180 for a month supply. However, those herbal supplements I listed are also very effective. Trying taking grapeseed (a natural antibiotic as well) extract and caprylic acid together. As for enzymes it took me a while to discovered the best kind and by best I mean most inclusive and concentrated. Digest more ULTRA. They come in a blue and yellow bottle and run about $50. I made the mistake of buying one with FOS and it hurt.

At first you will weight, it's inevitable just accept it. I've always been underweight and on the diet I was hovering around 135lbs. Now I am 170lbs and on the same diet! Let me include some more foods. Onions, garlic (natural antibiotic/anti fungal), green beans, No tomatoes as they I found increased my inflammation. I also drink green food powder mixed with water. I particularly enjoy "amazing grass" it comes in a few different flavor a just avoid the green "energy" formula as it has caffeine. Those drinks are by far the best tasting green powder you'll ever find. They are sweetened but with stevia which I found is ok in limited amounts later in the diet. Spinage once sautéed to breakdown the fibers is also great. A lot of people are allergic to eggs and they don't know it so I didn't include eggs. However, you're not eat a few a week just don't over do it. Soy especially soy milk is tricky as most commercial soy milk contain something called carrageenan which is causes inflammation. The only soy I drank was found in my local whole foods store and it was in the cereal section (not in the fridge) but READ THE LABELS on everything. Once I could digest raw foods I began eating salad with home made dressing (lemons, salt, and oil) because every single dressing out there contains sugar. Make your own mayo with eggs, lemon juice, oil and a ton of patience with an electric mixer. I can look through my food diary for some more ideas. As for fish, I suggest wild caught only and poached or baked in water. The idea in the very beginning stages is to cook (steaming and poaching is best) your food without killing too many enzymes, vits while breaking down the fibers. That's why I suggest hcl and enzymes to help with that process. Ohh I almost forgot. If you're worried about malnutrition which you will once your body begins to detox get a mineral supplement called angstrom. Well it's not a brand but a type of mineral supplementation most readily absorbable by our bodies. I just got the AM, PM and Iron formulas and proceeded to turn off my taste buds as those along with the nystatin are the worst things you'll ever put into your mouth. If you need tips on cook let me know I have almost perfected this diet.
02-01-2013, 09:20 AM   #7
Beach
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That's wonderful that you are having success with diet, concentrating on gut flora health! Congratulations! To an extent that is what I'm doing too and having some success. I've been avoiding the 3 items I'm familiar with that can disrupt gut flora - wheat, chlorine used to disinfect tap water, and alcohol. I have not taken a probiotic pill so far, but I think that will change soon. And I did begin eating a yoghurt with living cultures in it. Additionally, I'm on a limited diet.

So far so good! The gut isn't completely well but am experiencing a great improvement over how I felt before.

In the past I've done very limited diets. A few times I had success with them, making myself over time 100% well to the gut. The hard part I found was expanding the diet. What ever causes my MC takes time to occur. It isn't a sudden event, i believe. Maybe the gut flora going bad could explain that.

Going somewhat off topic, but a month ago I was doing some family genealogy work. I ran across an interesting article about the old Irish diet. It talked about how the poor Irish only ate potatoes and pasture fed cows milk year round. Then the potato famine of the 1840s struck, killing a million Irish and causing a million to emigrate. What was interesting was the mention of what happened to the Irish diet and resulting national health after the famine. It said with fewer Irish in the country wages went up, and as a result new foods could be afforded by the poor. A paragraph from the older article said this ~

"...Dietary changes were not always accompanied by improvements in nutritional standards. Paradoxically, at the lower end of the income scale the transition from a monotonous menu to more varied fare resulted in a fall in nutritional quality. The pre-Farmine potatoes and milk regime had been rich in almost all nutrients, but when it was replaced by cereals, bread, butter, and tea the nourishment was inferior. This new patterns was particularly prevalent in towns, where death rates from disease of poverty were high. Contemporary commentators noted the deterioration in the nation's health and many ascribed it to poor diet..."
02-01-2013, 09:39 AM   #8
wacko847
 
Join Date: Jan 2007
Location: Arlington hts, Illinois
That's wonderful that you are having success with diet, concentrating on gut flora health! Congratulations! To an extent that is what I'm doing too and having some success. I've been avoiding the 3 items I'm familiar with that can disrupt gut flora - wheat, chlorine used to disinfect tap water, and alcohol. I have not taken a probiotic pill so far, but I think that will change soon. And I did begin eating a yoghurt with living cultures in it. Additionally, I'm on a limited diet.

So far so good! The gut isn't completely well but am experiencing a great improvement over how I felt before.

In the past I've done very limited diets. A few times I had success with them, making myself over time 100% well to the gut. The hard part I found was expanding the diet. What ever causes my MC takes time to occur. It isn't a sudden event, i believe. Maybe the gut flora going bad could explain that.

Going somewhat off topic, but a month ago I was doing some family genealogy work. I ran across an interesting article about the old Irish diet. It talked about how the poor Irish only ate potatoes and pasture fed cows milk year round. Then the potato famine of the 1840s struck, killing a million Irish and causing a million to emigrate. What was interesting was the mention of what happened to the Irish diet and resulting national health after the famine. It said with fewer Irish in the country wages went up, and as a result new foods could be afforded by the poor. A paragraph from the older article said this ~

"...Dietary changes were not always accompanied by improvements in nutritional standards. Paradoxically, at the lower end of the income scale the transition from a monotonous menu to more varied fare resulted in a fall in nutritional quality. The pre-Farmine potatoes and milk regime had been rich in almost all nutrients, but when it was replaced by cereals, bread, butter, and tea the nourishment was inferior. This new patterns was particularly prevalent in towns, where death rates from disease of poverty were high. Contemporary commentators noted the deterioration in the nation's health and many ascribed it to poor diet..."
I'm glad you're feeling better!!! I forgot to mention psyllium fiber but once again read the label and get just the husks. I prefer to drink one large table spoon around 10-11 am and the. At 10-11 pm with a ton of water.
02-01-2013, 01:18 PM   #9
Beach
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Thanks, it's nice to be feeling somewhat human once again! Fiber has always been a double edged sword for me. When the gut is acting up, fiber can make the situation worse. When feeling healthier though, fiber has the opposite effect. It probably would be good if I gave psyllium a try in the future to how the gut handles it.
02-01-2013, 01:25 PM   #10
wacko847
 
Join Date: Jan 2007
Location: Arlington hts, Illinois
Thanks, it's nice to be feeling somewhat human once again! Fiber has always been a double edged sword for me. When the gut is acting up, fiber can make the situation worse. When feeling healthier though, fiber has the opposite effect. It probably would be good if I gave psyllium a try in the future to how the gut handles it.
It will take your body a few weeks to get used to the extra fiber so make sure you're drinking a ton of water. If fiber gives you problems try bentonite clay it will provide the needed bulking agent without the fiber. However, you need to get the inflammation under control otherwise nothing will work. Good luck!
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