Hi all, just quickly wanted to let you know my experiences and what helps for me:
-Born in 1974
-decided to do something about my acne in 1999, was 25 and still had it.
-got on progressively more powerful drugs from a dermatologist
-ended up with roaccutane
-removed most of my acne, dried up my skin gave me a pain in the behind
-pain got progressively worse from the start of summer till at christmas it was unendurable and had to go to the hospital
-ended up staying 2 months in hospital, 3 operations for anal fistula's and being poked around every which way but sideways and diagnosed crohn's
-was put on pentasa (4 grams a day), no other medication, improved considerably and was released, fistula's sealed up but 6 months later the fistulas came back and I've had drains in them since then.
then it gets foggy for a while..
-got 2 weeks of prednisone treatment, didn't cure anything but DID give me back my acne
-got suicidally depressed roundabout winter 2003-4 and got therapy and effexor as anti-depressiva. Did effexor for 7 years
-got a total of 15 operations, luckily all small and only for the fistula's, no resection or stoma..
Drugs I have been on , prescribed by the IBD specialist:
-Pentasa : since the start, it works.. because I can tell in 30-40 when I'm not taking enough: the fistula's become sensitive and painful (underlying cause: more inflammatory fluid builup)
-prednisone (10 years ago): didn't do jack **** but gave me back the acne
-remicade: seemed to work but:
-remicade and azathioprine combo: gave me an allergic reaction : intense muscle pains ( so intense I couldn't lift my head when waking up next day)
-Humira ( nearly 2 years now) : works pretty good, (by now I can tell when something works or does damage) no noticable side effects
-MTX (this spring): should have taken 3 pills a week, but since I found out accutane gave me crohn I research EVERY drug before I actually take it.
This stuff basically works by killing you slowly (stopping dna replication), so I decided to slowly build up the dose, and took half a pill the first week and one pill the next week..half a pill already gave me noticable side-effects and one pill the next week gave massive side-effects so I stopped immediately. It's actually in exactly the same class of drugs as accutane so it's a big no-no for me.
Drugs I've asked my GP to prescribe for me after doing my own damn research:
-Vitamin B12, folic acid, Vitamin D3, and Ferrofumarate:
Turned out that in 10 years of being sick ALL the specialists (5 or 6 of them) overlooked basic anemia (it's right there on the basic blood test!) and I had to figure it out by myself by reading on the 'net and comparing symptoms. Asked my GP for that basic blood test about 2 1/2 years ago, and since then I'm on iron and my health has being going straight up from then on!
Turns out iron not only cures anemia but improves stool as well, I don't have to go as often since I'm on it.
And here's the stuff that I myself figured out:
-1 gram of vitamin C a day, MINIMUM. Don't think even for a second that a pound of oranges gives you enough vitamin C. It doesn't, and you'll simply suffer from the deficiency. You also need C because the iron is a) better absorbed in the presence of C and b) most bacteria LOVE iron and C counters the bacteria. 1 gram is a minimum dose, an actual decent dose would be closer to 3-5 grams a day. You're chronically ill, you need a HUGE dose, not a trickle.
-multidose vitamin, vitamin B complex , D, and A. (Basically I can stuff myself with vitamins and still not get enough, because my gut is too inefficient. And I don't like swallowing 30 pills or so a day)
the multidose is just for starters, but the others need some explanation:
-B complex aids in iron uptake and dna replication. (and more, but these are obvious reasons why I need them)
-D...every crohn patient is suffering from a D deficiency. They just upped the RDA for healthy people, and we're not healthy so we need more. D is needed for proper immune function (which basically means not 'more' immune function but 'better controlled' immune function)
And very important: wearing sunscreen BLOCKS vitamin D creation, so do NOT use it! Simply don't go into the sun between 11 and 15 hours (if you live in a moderate zone like me, if not, YMMV) and don't go crazy.
(I actually had to find out the D deficiency by adding it to the test form myself while going from the doctor to the lab...even though we discussed it, and I asked to be tested, she didn't actually filled in the form..and lo and behold, I was right)
-vitamin A: (ro)accutane is a vitamin-A derivative but not ACTUALLY vitamin A: which means it displaces the real A in many body chemistry processes but doesn't fullfill the same function. That's why a low dose of A can give you night blindness but a HIGH dose of accutane also gives you night blindness. It displaces the real A in your eye and then blocks the visual chemistry process.
You have to realize, the effects of accutane manifest themselves as a combination of symptoms of both A overdosis AND A deficiency! The only way to counteract the effects of accutane is not less A but MORE A. Biochemical processes are often reversible dynamic balances..add more at one side and it gets used more. A typical 4-6 week accutane treatment adds the equivalent amount to your body of about 5-10 years of vitamin A supplementation...so yes that's a massive overdose.
A is essential for dna replication and accutane blocks dna replication by sitting in the place where A should be without actually acting the same way.
So, I'm supplementing with A because accutane and A are fat-soluble which means they are resilient and remain in the body for a long time if not consumed by processes. And A needs to be supplemented slowly and carefully, so it's a long process.
I've also removed my acne by a very simple and cheap detox procedure called 'oil pulling' (google it) which also reduces joint pain associated with crohn. Stuff the debunkers, it works 100%, and it sure as s*** isn't psychosomatic.
Finally, I recently found a supplement that dramatically reduces gut pains and cramps that are due to bloating (somewhere between all this I found out (by myself, again) that I'm slightly lactose-intolerant), and when I say dramatically, I mean I could eat something wrong and have painfull to immobilizing bloating for 3-4 days before, and have NO bloating after:
Papaya-enzymes. I use a combination of papaya/bromelain tablets that you suck on like mints, about 2 to 3 a day. They work better than most of the stuff I was prescribed by the IBD specialist..and they're not expensive, 12 euros gives me a 2 to 2 1/2 month supply.
------
So this has become a long story after all..I've gotten better to the point where I can now resume paid work, and 99% of that improvement was done by taking control myself of my medication. One thing is, a 'doctor' is not necessarily a 'competent' doctor.
In fact:
-all doctors are people
-some people are idiots
ergo:
-some doctors are bound to be idiots. No matter how big the title.
To give you more of a proper timeline:
1999: got ill after accutane
2000, january-february: hospitalized and diagnosed
2003: prednisone treatment gave back acne
2004: seriously suicidal, therapy and start of effexor treatment
2005: remicade treatment, stopped after allergic reaction
2000-present: tried varied stuff that didn't work
2005-2006: figured out accutane caused it
2009 september: started oil pulling after figuring out how acne is caused (as in: the REAL cause)
2010 march-april: acne dissappears
2010, jan-feb: figured out I was anemic, had it tested and iron started
2008-2010: tapered off effexor from 150 mg to 75 mg to 30 mg
2010 april: stopped effexor completely
2010 may: started Humira, improvement noticable
2012, early spring: MTX prescribed, basically not taking it after doing my own research: I'm not going to risk 2 years of steady progression on chemotherapy drug with massive and dangerous side effects...that's how i got crohn in the first place.
2012 may: papaya-bromelain added, cramps reduced massively
Before I did the oil-pulling and iron supplements, in august 2009 my health was like this:
15-20 bathroom visits a day, seriously chronic fatigued, depressed, did a tiny bit of volunteer work, couldn't walk 1000 meters without having to rest for an hour, pale, no hobbies besides reading and computer games..on welfare, unable to work. If one of the fistulas closed up, I got an abscess and had to be operated on.
Now:
5-10 bathroom visits. No chronic fatigue left, no depression, doing 10-20 hours of volunteer work a week in 2 organizations, looking for a paid job, doing some other unpaid work for 20 hours a week, actually biking 40-50 km AFTER a 7 hour workday(!), taken up biking, swimming and weight-lifting, bought a motorcycle. A fistula closed in april, and it's not acting up.
Haven't completely read a book (besides one on bodybuilding) in over a year or played a computer game in three months, I've been basically on a 50 hour work week for the past 2 months.
Basically, the ineptitude of half a dozen specialists has caused me to walk around chronically fatigued for no sane reason for at least half a dozen years..and I got sick because of a dermatologist in the first place. I'm trying to get LDN treatment because I want to the bathroom visits to be even better, but because it's off-label my GP, my specialist and several other local doctors are too chickenshit to prescribe it. Did I mention doctors are idiots? Out here in the Netherlands you cant sue for 28 million bucks like in the US, so I've basically lost 13 years of my life for nothing, and I'm going to try to make that up.
My advice:
-Do NOT trust your doctor when he/she prescribes you something. Do your OWN bloody research, it pays off considerably, and it surely prevents you from getting poisoned.
-call your GP, have yourself tested for anemia and ALL vitamin deficiences you can think of...and remedy them immediately. Every single person in the western world has at least one deficiency due to inproper diet and modern eating habits. You probably have many.
-REALLY listen to your body. I can actually feel when stuff works or not. When I inject myself with Humira or B12 for example, I get a cozy warm feeling, a bit like a glow at the exact place in my lower intestine where it is the sickest, (as opposed to a burning sensation, which usually is bad), same goes with what NOT to eat/inject..I found the lactose intolerance out that way and when azathioprine/remicade causes massive muscle pain, that's a hint as well. Same goes for pentasa, my body tells me when I'm not taking enough. Learn to understand the more subtle hints your body is giving you.
-Detox. Take whatever way you like best or think works for you, there are hundreds of ways, because I'm on welfare I used cheap ones and found one that worked. Make sure it cleans as many organs as possible.
-fix your eating habits. Do a food allergy test, go on an elementary diet for a while (which is the same as detoxing the gut). I'm eating more fruit and the nutrient content is low but the fibers help some.
-all of the above help, some more than others. But a lot of little improvements tied together make a HUGE improvement.
-Born in 1974
-decided to do something about my acne in 1999, was 25 and still had it.
-got on progressively more powerful drugs from a dermatologist
-ended up with roaccutane
-removed most of my acne, dried up my skin gave me a pain in the behind
-pain got progressively worse from the start of summer till at christmas it was unendurable and had to go to the hospital
-ended up staying 2 months in hospital, 3 operations for anal fistula's and being poked around every which way but sideways and diagnosed crohn's
-was put on pentasa (4 grams a day), no other medication, improved considerably and was released, fistula's sealed up but 6 months later the fistulas came back and I've had drains in them since then.
then it gets foggy for a while..
-got 2 weeks of prednisone treatment, didn't cure anything but DID give me back my acne
-got suicidally depressed roundabout winter 2003-4 and got therapy and effexor as anti-depressiva. Did effexor for 7 years
-got a total of 15 operations, luckily all small and only for the fistula's, no resection or stoma..
Drugs I have been on , prescribed by the IBD specialist:
-Pentasa : since the start, it works.. because I can tell in 30-40 when I'm not taking enough: the fistula's become sensitive and painful (underlying cause: more inflammatory fluid builup)
-prednisone (10 years ago): didn't do jack **** but gave me back the acne
-remicade: seemed to work but:
-remicade and azathioprine combo: gave me an allergic reaction : intense muscle pains ( so intense I couldn't lift my head when waking up next day)
-Humira ( nearly 2 years now) : works pretty good, (by now I can tell when something works or does damage) no noticable side effects
-MTX (this spring): should have taken 3 pills a week, but since I found out accutane gave me crohn I research EVERY drug before I actually take it.
This stuff basically works by killing you slowly (stopping dna replication), so I decided to slowly build up the dose, and took half a pill the first week and one pill the next week..half a pill already gave me noticable side-effects and one pill the next week gave massive side-effects so I stopped immediately. It's actually in exactly the same class of drugs as accutane so it's a big no-no for me.
Drugs I've asked my GP to prescribe for me after doing my own damn research:
-Vitamin B12, folic acid, Vitamin D3, and Ferrofumarate:
Turned out that in 10 years of being sick ALL the specialists (5 or 6 of them) overlooked basic anemia (it's right there on the basic blood test!) and I had to figure it out by myself by reading on the 'net and comparing symptoms. Asked my GP for that basic blood test about 2 1/2 years ago, and since then I'm on iron and my health has being going straight up from then on!
Turns out iron not only cures anemia but improves stool as well, I don't have to go as often since I'm on it.
And here's the stuff that I myself figured out:
-1 gram of vitamin C a day, MINIMUM. Don't think even for a second that a pound of oranges gives you enough vitamin C. It doesn't, and you'll simply suffer from the deficiency. You also need C because the iron is a) better absorbed in the presence of C and b) most bacteria LOVE iron and C counters the bacteria. 1 gram is a minimum dose, an actual decent dose would be closer to 3-5 grams a day. You're chronically ill, you need a HUGE dose, not a trickle.
-multidose vitamin, vitamin B complex , D, and A. (Basically I can stuff myself with vitamins and still not get enough, because my gut is too inefficient. And I don't like swallowing 30 pills or so a day)
the multidose is just for starters, but the others need some explanation:
-B complex aids in iron uptake and dna replication. (and more, but these are obvious reasons why I need them)
-D...every crohn patient is suffering from a D deficiency. They just upped the RDA for healthy people, and we're not healthy so we need more. D is needed for proper immune function (which basically means not 'more' immune function but 'better controlled' immune function)
And very important: wearing sunscreen BLOCKS vitamin D creation, so do NOT use it! Simply don't go into the sun between 11 and 15 hours (if you live in a moderate zone like me, if not, YMMV) and don't go crazy.
(I actually had to find out the D deficiency by adding it to the test form myself while going from the doctor to the lab...even though we discussed it, and I asked to be tested, she didn't actually filled in the form..and lo and behold, I was right)
-vitamin A: (ro)accutane is a vitamin-A derivative but not ACTUALLY vitamin A: which means it displaces the real A in many body chemistry processes but doesn't fullfill the same function. That's why a low dose of A can give you night blindness but a HIGH dose of accutane also gives you night blindness. It displaces the real A in your eye and then blocks the visual chemistry process.
You have to realize, the effects of accutane manifest themselves as a combination of symptoms of both A overdosis AND A deficiency! The only way to counteract the effects of accutane is not less A but MORE A. Biochemical processes are often reversible dynamic balances..add more at one side and it gets used more. A typical 4-6 week accutane treatment adds the equivalent amount to your body of about 5-10 years of vitamin A supplementation...so yes that's a massive overdose.
A is essential for dna replication and accutane blocks dna replication by sitting in the place where A should be without actually acting the same way.
So, I'm supplementing with A because accutane and A are fat-soluble which means they are resilient and remain in the body for a long time if not consumed by processes. And A needs to be supplemented slowly and carefully, so it's a long process.
I've also removed my acne by a very simple and cheap detox procedure called 'oil pulling' (google it) which also reduces joint pain associated with crohn. Stuff the debunkers, it works 100%, and it sure as s*** isn't psychosomatic.
Finally, I recently found a supplement that dramatically reduces gut pains and cramps that are due to bloating (somewhere between all this I found out (by myself, again) that I'm slightly lactose-intolerant), and when I say dramatically, I mean I could eat something wrong and have painfull to immobilizing bloating for 3-4 days before, and have NO bloating after:
Papaya-enzymes. I use a combination of papaya/bromelain tablets that you suck on like mints, about 2 to 3 a day. They work better than most of the stuff I was prescribed by the IBD specialist..and they're not expensive, 12 euros gives me a 2 to 2 1/2 month supply.
------
So this has become a long story after all..I've gotten better to the point where I can now resume paid work, and 99% of that improvement was done by taking control myself of my medication. One thing is, a 'doctor' is not necessarily a 'competent' doctor.
In fact:
-all doctors are people
-some people are idiots
ergo:
-some doctors are bound to be idiots. No matter how big the title.
To give you more of a proper timeline:
1999: got ill after accutane
2000, january-february: hospitalized and diagnosed
2003: prednisone treatment gave back acne
2004: seriously suicidal, therapy and start of effexor treatment
2005: remicade treatment, stopped after allergic reaction
2000-present: tried varied stuff that didn't work
2005-2006: figured out accutane caused it
2009 september: started oil pulling after figuring out how acne is caused (as in: the REAL cause)
2010 march-april: acne dissappears
2010, jan-feb: figured out I was anemic, had it tested and iron started
2008-2010: tapered off effexor from 150 mg to 75 mg to 30 mg
2010 april: stopped effexor completely
2010 may: started Humira, improvement noticable
2012, early spring: MTX prescribed, basically not taking it after doing my own research: I'm not going to risk 2 years of steady progression on chemotherapy drug with massive and dangerous side effects...that's how i got crohn in the first place.
2012 may: papaya-bromelain added, cramps reduced massively
Before I did the oil-pulling and iron supplements, in august 2009 my health was like this:
15-20 bathroom visits a day, seriously chronic fatigued, depressed, did a tiny bit of volunteer work, couldn't walk 1000 meters without having to rest for an hour, pale, no hobbies besides reading and computer games..on welfare, unable to work. If one of the fistulas closed up, I got an abscess and had to be operated on.
Now:
5-10 bathroom visits. No chronic fatigue left, no depression, doing 10-20 hours of volunteer work a week in 2 organizations, looking for a paid job, doing some other unpaid work for 20 hours a week, actually biking 40-50 km AFTER a 7 hour workday(!), taken up biking, swimming and weight-lifting, bought a motorcycle. A fistula closed in april, and it's not acting up.
Haven't completely read a book (besides one on bodybuilding) in over a year or played a computer game in three months, I've been basically on a 50 hour work week for the past 2 months.
Basically, the ineptitude of half a dozen specialists has caused me to walk around chronically fatigued for no sane reason for at least half a dozen years..and I got sick because of a dermatologist in the first place. I'm trying to get LDN treatment because I want to the bathroom visits to be even better, but because it's off-label my GP, my specialist and several other local doctors are too chickenshit to prescribe it. Did I mention doctors are idiots? Out here in the Netherlands you cant sue for 28 million bucks like in the US, so I've basically lost 13 years of my life for nothing, and I'm going to try to make that up.
My advice:
-Do NOT trust your doctor when he/she prescribes you something. Do your OWN bloody research, it pays off considerably, and it surely prevents you from getting poisoned.
-call your GP, have yourself tested for anemia and ALL vitamin deficiences you can think of...and remedy them immediately. Every single person in the western world has at least one deficiency due to inproper diet and modern eating habits. You probably have many.
-REALLY listen to your body. I can actually feel when stuff works or not. When I inject myself with Humira or B12 for example, I get a cozy warm feeling, a bit like a glow at the exact place in my lower intestine where it is the sickest, (as opposed to a burning sensation, which usually is bad), same goes with what NOT to eat/inject..I found the lactose intolerance out that way and when azathioprine/remicade causes massive muscle pain, that's a hint as well. Same goes for pentasa, my body tells me when I'm not taking enough. Learn to understand the more subtle hints your body is giving you.
-Detox. Take whatever way you like best or think works for you, there are hundreds of ways, because I'm on welfare I used cheap ones and found one that worked. Make sure it cleans as many organs as possible.
-fix your eating habits. Do a food allergy test, go on an elementary diet for a while (which is the same as detoxing the gut). I'm eating more fruit and the nutrient content is low but the fibers help some.
-all of the above help, some more than others. But a lot of little improvements tied together make a HUGE improvement.
