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. **** 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.
:boring:IF YOU DONT CARE ABOUT MY STORY START READING HERE:boring:
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 ******* 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!!:ytongue:
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. **** 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.
:boring:IF YOU DONT CARE ABOUT MY STORY START READING HERE:boring:
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 ******* 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!!:ytongue:
