Question:

I can go one step further than that. I have suspected vitamins made it WORSE. I think I feel better without taking them. Also don’t be shy about your thery that your gastro trouble has possibly caused arthritis.  It is absolutley connected. If we live long enough someone in some lab will see it under a special microscope. It certainly is huge task figuring out which of the millions of "germs" in our tracks are the bad boys in the group.

Response:

JC I’m new to this group. I didn’t know that vitamins & supplements was a heated discussion here. My intention is not to aggravate anyone. This is just what I have abserved in the time that I personally have had Crohn’s and what I have learned from my grandmother. And from talking to others. My Gram was what some would call a healthnut. There was no white sugar in the house, but natural honey. By that I mean it wasn’t pastuerized. She made her own bread from wheat, not white bread… get the idea? Yet even with that more natural/healthy diet she took vitamins and other supllements. I learned a lot from her. If one believes that the supplements are at least worth a try and give them some time to work, well, they can help. (Plese note I sad help and not cure.) A typical western diet is not great for the body. I don’t think that is the main cause of IBD’s. The more I learn the more I think there have to be several factors in line for it to occur, just as it seems that everyone has thier own set of trigger foods. I have slacked off on my supplements and what I eat. For me, that aggravates my situation. But don’t beat yourself up for not taking your vitamin/nutritional supplements. The stress from that is exactly what you don’t need. You’re human. For me, it’s one more go ’round with the old, "I want to be "normal" like everyone else." I have some type of arthritis, don’t know which because the doc and I never ran any tests for that determination. It was enough for me at the time just to learn that it wasn’t all in my head. I got better help from my GP than I did the gastro doc. I’m so tired of hearing how it’s all in my head. It’s not. It’s coming out my *ss. As I post more you will learn that I have a fairly warped sense of humor. But that is one way I deal with my ‘health issues.’ Having Crohn’s, then cancer and going through chemotherapy ten years ago did that – I had to to make it through. If you feel that it helped, then go back on your vitamin/nutritional supplements. It’s your personal experience that will tell you if that is best for you. Candice

– Hide quoted text — Show quoted text -> Hey everyone, > I realize this is not an RA board, so please don’t misunderstand this > as my woeful attempt at steering the group off > topic……<—-sarcasm. > Yes, well……as I have mentioned previously, I was diagnosed w/CD in > 1992, have been weaned off of pred and on Remicade for nearly all of > last year.  I have not decided whether or not to take another > treatment – the Remicade has been successful at keeping my colon > quiet.  But in the meantime here, something new has developed, and I > suspect it is RA.  I have been to see my phys’s, and am going for > bloodwork tomorrow, but its tell-tale signs have manifested themselves > in my joints. > I referred to "peripheral arthritis" in a previous post, but upon > speaking with a friend who has suffered w/RA for 15 years, and after > her seeing the hot, red, swollen joints in my hands, she suspects the > same as well. > Only the bloodwork will indicate for sure, but I guess I’m curious to > know – how many other ppl here w/IBD have RA?  How do you deal with > it?  I know that Remicade is designed to handle either/or, but, jeez, > how long can anyone stay on that stuff…….this is a whole new pain > that I still haven’t quite managed to find the appropriate words for > which to describe.  8P~~~ > My next comment is a purely coincidental observation and not meant to > aggravate an already heated situation on the topic, BUT…….I was > faithful in taking my vitamin/nutritional supplements up until about 2 > months ago…..just getting lazy, you know how it gets when ur already > pumping down 20+ pills a day……it’s tedious.  So, I’ve slacked off > Anyhow…….anyone else had this experience of IBD segueing into RA? > Thanks! > jc

Response:

Well I haven’t touched pred in along long time and I’ve never done Remicade….but I can tell you that 2 months without your Vitamins Isn’t the cause of your RA. Your RA has been progressing for a lot longer then that. Your just really noticeing it now.

– Hide quoted text — Show quoted text -> Hey everyone, > I realize this is not an RA board, so please don’t misunderstand this > as my woeful attempt at steering the group off > topic……<—-sarcasm. > Yes, well……as I have mentioned previously, I was diagnosed w/CD in > 1992, have been weaned off of pred and on Remicade for nearly all of > last year.  I have not decided whether or not to take another > treatment – the Remicade has been successful at keeping my colon > quiet.  But in the meantime here, something new has developed, and I > suspect it is RA.  I have been to see my phys’s, and am going for > bloodwork tomorrow, but its tell-tale signs have manifested themselves > in my joints. > I referred to "peripheral arthritis" in a previous post, but upon > speaking with a friend who has suffered w/RA for 15 years, and after > her seeing the hot, red, swollen joints in my hands, she suspects the > same as well. > Only the bloodwork will indicate for sure, but I guess I’m curious to > know – how many other ppl here w/IBD have RA?  How do you deal with > it?  I know that Remicade is designed to handle either/or, but, jeez, > how long can anyone stay on that stuff…….this is a whole new pain > that I still haven’t quite managed to find the appropriate words for > which to describe.  8P~~~ > My next comment is a purely coincidental observation and not meant to > aggravate an already heated situation on the topic, BUT…….I was > faithful in taking my vitamin/nutritional supplements up until about 2 > months ago…..just getting lazy, you know how it gets when ur already > pumping down 20+ pills a day……it’s tedious.  So, I’ve slacked off > Anyhow…….anyone else had this experience of IBD segueing into RA? > Thanks! > jc

Response:

as i have mentioned previously, about 20% of ibd sufferers also suffer from "enteropathic" sx’s, some of which are a form of arthritis.   this is what i have.   this is not a destructive type of arthritis as compared to ra. there is a significant different/mechanism at work.  best bet is to get the bloods, a lot can be postulated (you like that word?) from blood work for ra.  i am surprised the remicade is not doing more for this, if in fact, it is ra.  maybe it’s not (that would be a good thing).  if it comes back not, don’t give up.  keep in mind that there is a whole host of arthritis types under the umbrella term "spondyloarthropathies".   personally, i would not get down on yourself for not taking your vitamins, etc.  i don’t think they can solve cd/ra or enteropathic issues. jeff

– Hide quoted text — Show quoted text -> Hey everyone, > I realize this is not an RA board, so please don’t misunderstand this > as my woeful attempt at steering the group off > topic……<—-sarcasm. > Yes, well……as I have mentioned previously, I was diagnosed w/CD in > 1992, have been weaned off of pred and on Remicade for nearly all of > last year.  I have not decided whether or not to take another > treatment – the Remicade has been successful at keeping my colon > quiet.  But in the meantime here, something new has developed, and I > suspect it is RA.  I have been to see my phys’s, and am going for > bloodwork tomorrow, but its tell-tale signs have manifested themselves > in my joints. > I referred to "peripheral arthritis" in a previous post, but upon > speaking with a friend who has suffered w/RA for 15 years, and after > her seeing the hot, red, swollen joints in my hands, she suspects the > same as well. > Only the bloodwork will indicate for sure, but I guess I’m curious to > know – how many other ppl here w/IBD have RA?  How do you deal with > it?  I know that Remicade is designed to handle either/or, but, jeez, > how long can anyone stay on that stuff…….this is a whole new pain > that I still haven’t quite managed to find the appropriate words for > which to describe.  8P~~~ > My next comment is a purely coincidental observation and not meant to > aggravate an already heated situation on the topic, BUT…….I was > faithful in taking my vitamin/nutritional supplements up until about 2 > months ago…..just getting lazy, you know how it gets when ur already > pumping down 20+ pills a day……it’s tedious.  So, I’ve slacked off > Anyhow…….anyone else had this experience of IBD segueing into RA? > Thanks! > jc

Response:

Hey everyone, I realize this is not an RA board, so please don’t misunderstand this as my woeful attempt at steering the group off topic……<—-sarcasm. Yes, well……as I have mentioned previously, I was diagnosed w/CD in 1992, have been weaned off of pred and on Remicade for nearly all of last year.  I have not decided whether or not to take another treatment – the Remicade has been successful at keeping my colon quiet.  But in the meantime here, something new has developed, and I suspect it is RA.  I have been to see my phys’s, and am going for bloodwork tomorrow, but its tell-tale signs have manifested themselves in my joints.   I referred to "peripheral arthritis" in a previous post, but upon speaking with a friend who has suffered w/RA for 15 years, and after her seeing the hot, red, swollen joints in my hands, she suspects the same as well.   Only the bloodwork will indicate for sure, but I guess I’m curious to know – how many other ppl here w/IBD have RA?  How do you deal with it?  I know that Remicade is designed to handle either/or, but, jeez, how long can anyone stay on that stuff…….this is a whole new pain that I still haven’t quite managed to find the appropriate words for which to describe.  8P~~~ My next comment is a purely coincidental observation and not meant to aggravate an already heated situation on the topic, BUT…….I was faithful in taking my vitamin/nutritional supplements up until about 2 months ago…..just getting lazy, you know how it gets when ur already pumping down 20+ pills a day……it’s tedious.  So, I’ve slacked off Anyhow…….anyone else had this experience of IBD segueing into RA? Thanks! jc

Response:

Question:

Drinking distilled water is dangerous. ….Because there are minerals and salts that you need that are in water and distilled water doesn’t have them. If you only drink distilled water you will dilute them out and it could be really bad… Yes, that’s what some people believe. But I’ve been drinking distilled water for 26 years, and it cured me of my kidney stones (with time it actually dissolved the "cluster" of kidney stones I had in one kidney). And all of the blood tests I’ve had over the years have always come back normal, with no nutritional deficiencies showing up. And besides, here’s what some medical experts have to say about distilled water and the minerals in water (reference link below): — "To the best of our knowledge, there would not be any adverse health effects from the continued ingestion of distilled water." May 17 1985; American Medical Association; Division of Personal and Public Health Policy; Jack A. Bell – Assistant Director "Distilled water should be used if the usual water supply(tap or bottled) contains more than 20 mg. of sodium per liter." American Heart Association(1986) "The body’s need for minerals is largely met through foods, not drinking water." American Medical Journal And more info: WATER QUALITY ASSOCIATION "…the amounts of minerals found in water are insignificant when compared to those found in the foods we eat. Because tap water varies substantially in the amount and proportion of mineral content, the most reliable source of those essential mineral nutrients come from a normal daily diet consisting of fish, meat and vegetables." Water Quality Association Brochure #S20 – "Discover Distilled Water" UNITED STATES MILITARY "Distilled water is safe to drink and should have no adverse effects on your health. Distillation merely removes most of the dissolved materials, which are found in all natural waters." Department of the Army U.S. Army Health Services Command; Raymond H. Bishop, Jr. M.D. Major General, Commander – Medical Corps.May 23, 1983 "There is nothing about distilled water that would make it harmful for the body. It may be helpful to remember that distilled water is the only water available for crews of Naval vessels at sea." May 26, 1983, United States Department of Agriculture Consumer Nutrition Division Frank N. Hepburn; Chief, Nutrient Data Research Branch ref. link (many more quotes here, also): http://www.aquatechnology.net/frame426340.html -B – Hide quoted text — Show quoted text ->>>Going out and buying a distiller was one of the first things i did when i >>>got diagnosed with Crohn’s disease. >>>Can’t say I ever had the displeasure of having stones  :) >>>>I can tell you how I cured myself of (calcium based) kidney stones long >>>>ago. >>>>About 26 years ago, I had a kidney stone come out, and X-rays showed I >>>>had a >>>>"cluster" of them in my left kidney. I wasn’t satisfied with the >>>>urologist’s >>>>suggestions (drink a lot of water, use less dairy products), so I looked >>>>around for different alternatives, and came across a couple of books – >>>>"The >>>>Choice is Clear"  by Dr. Allen E. Banik, and "The Shocking Truth About >>>>Water" by Paul Bragg. They both made the case for drinking and cooking >>>>with >>>>only (steam) distilled water, since tap, mineral and spring water, etc, >>>>contain inorganic minerals which the body doesn’t utilize well and can >>>>lead >>>>to kidney stones and many other problems. Distilled water is close to >>>>pure. >>>>Anyway, I was desperate so I purchased an electric water distiller (which >>>>is >>>>still working to this day), and drank only distilled water from then on. >>>>I >>>>had no further problems, and a number of years later follow-up X-rays >>>>showed >>>>that the "cluster" of stones in my kidney were gone except for 1 small >>>>one >>>>which still remained. Unfortunately that one later came out, before it >>>>dissolved like the others. That was 16 years ago, and I haven’t had a >>>>single >>>>problem with kidney stones since. I have continued to use a LOT of dairy >>>>products through all this, yet the stones disappeared with the distilled >>>>water regardless. >>>>There are people who don’t believe that inorganic minerals can be >>>>dangerous >>>>to your health, and some people don’t believe that drinking distilled >>>>water >>>>is good. That’s fine, but I swear by it. I don’t know if your kidney >>>>stones >>>>are calcium based, but you may want to consider trying distilled water. >>>>You >>>>should be able to buy it at a grocery or drug store if you don’t want to >>>>get >>>>a machine. Make sure it’s distilled water, and not mineral or spring >>>>water. >>>>When doctors say drink lots of (tap) water as a kidney stone treatment, I >>>>think that’s one of the worst things you can do! Make it distilled water >>>>and >>>>that may help. (You are producing stones so fast that I wonder if maybe >>>>something else is going on, though… ) >>>>Some more info (I’m not affiliated in any way with these sites, >>>>they just have relevant info, there’s lots more if you do a Google >>>>search): >>>>http://www.health-n-energy.com/ARTICLES/waterop.htm >>>>http://www.alphaomegafood.com/distilledwater.htm >>>>-B >>>>>Hi All, >>>>>I’ve been away from the group for a few years now. >>>>>After suffering with UC for several years, I had a colectomy and J-Pouch >>>>>about 6 years ago, and have been symptom free since the surgery and >>>>>doing >>>>>well. >>>>>I did however have Kidney Stones a few times after being diagnosed with >>>>UC, >>>>>but always about 2 years between attacks. And I’ve had stones since the >>>>>surgery but with about the same timing, approx 2 years between stones. >>>>BUT, >>>>>I started having the same pains about 6 months ago. A CT scan showed >>>>>that >>>>I >>>>>had stones in both kidneys. >>>>>My urologist scheduled me for the "scope" extraction / breaking of the >>>>>stones, and I passed a large stone fron the left kidney just before the >>>>>surgery (after about 36 hours of hospitalization from the pain of >>>>>course) >>>>>In the surgery they removed 2 small stones of approx 6-7mm in size, and >>>>>broke up a much larger stone. They had to go back in 2 weeks later to >>>>remove >>>>>more of the pieces, and a third procedure a week later to remove a stint >>>>>from the ureter. This was only 3 months ago >>>>>Since then I have been in the emergency room 2 times with stones, and >>>>>have >>>>>been passing smaller ones every 2 weeks. I have increased my water and >>>>>cranberry juice dramatically but nothing seems to stop my producing the >>>>>stones at an amazing rate. >>>>>This is getting very frustrating. >>>>>Any suggestions from the group ???? >>>>>Thanx >>>>>Greg >>– >>remove YOURFOOT before responding > — > remove YOURFOOT before responding

Response:

Because there are minerals and salts that you need that are in water and distilled water doesn’t have them. If you only drink distilled water you will dilute them out and it could be really bad… Debs – Hide quoted text — Show quoted text – > Why? > Rebecca >Drinking distilled water is dangerous. >Debs >>Going out and buying a distiller was one of the first things i did when i >>got diagnosed with Crohn’s disease. >>Can’t say I ever had the displeasure of having stones  :) >>>I can tell you how I cured myself of (calcium based) kidney stones long >>>ago. >>>About 26 years ago, I had a kidney stone come out, and X-rays showed I >>>had a >>>"cluster" of them in my left kidney. I wasn’t satisfied with the >>>urologist’s >>>suggestions (drink a lot of water, use less dairy products), so I looked >>>around for different alternatives, and came across a couple of books – >>>"The >>>Choice is Clear"  by Dr. Allen E. Banik, and "The Shocking Truth About >>>Water" by Paul Bragg. They both made the case for drinking and cooking >>>with >>>only (steam) distilled water, since tap, mineral and spring water, etc, >>>contain inorganic minerals which the body doesn’t utilize well and can >>>lead >>>to kidney stones and many other problems. Distilled water is close to >>>pure. >>>Anyway, I was desperate so I purchased an electric water distiller (which >>>is >>>still working to this day), and drank only distilled water from then on. >>>I >>>had no further problems, and a number of years later follow-up X-rays >>>showed >>>that the "cluster" of stones in my kidney were gone except for 1 small >>>one >>>which still remained. Unfortunately that one later came out, before it >>>dissolved like the others. That was 16 years ago, and I haven’t had a >>>single >>>problem with kidney stones since. I have continued to use a LOT of dairy >>>products through all this, yet the stones disappeared with the distilled >>>water regardless. >>>There are people who don’t believe that inorganic minerals can be >>>dangerous >>>to your health, and some people don’t believe that drinking distilled >>>water >>>is good. That’s fine, but I swear by it. I don’t know if your kidney >>>stones >>>are calcium based, but you may want to consider trying distilled water. >>>You >>>should be able to buy it at a grocery or drug store if you don’t want to >>>get >>>a machine. Make sure it’s distilled water, and not mineral or spring >>>water. >>>When doctors say drink lots of (tap) water as a kidney stone treatment, I >>>think that’s one of the worst things you can do! Make it distilled water >>>and >>>that may help. (You are producing stones so fast that I wonder if maybe >>>something else is going on, though… ) >>>Some more info (I’m not affiliated in any way with these sites, >>>they just have relevant info, there’s lots more if you do a Google >>>search): >>>http://www.health-n-energy.com/ARTICLES/waterop.htm >>>http://www.alphaomegafood.com/distilledwater.htm >>>-B >>>>Hi All, >>>>I’ve been away from the group for a few years now. >>>>After suffering with UC for several years, I had a colectomy and J-Pouch >>>>about 6 years ago, and have been symptom free since the surgery and >>>>doing >>>>well. >>>>I did however have Kidney Stones a few times after being diagnosed with >>>UC, >>>>but always about 2 years between attacks. And I’ve had stones since the >>>>surgery but with about the same timing, approx 2 years between stones. >>>BUT, >>>>I started having the same pains about 6 months ago. A CT scan showed >>>>that >>>I >>>>had stones in both kidneys. >>>>My urologist scheduled me for the "scope" extraction / breaking of the >>>>stones, and I passed a large stone fron the left kidney just before the >>>>surgery (after about 36 hours of hospitalization from the pain of >>>>course) >>>>In the surgery they removed 2 small stones of approx 6-7mm in size, and >>>>broke up a much larger stone. They had to go back in 2 weeks later to >>>remove >>>>more of the pieces, and a third procedure a week later to remove a stint >>>>from the ureter. This was only 3 months ago >>>>Since then I have been in the emergency room 2 times with stones, and >>>>have >>>>been passing smaller ones every 2 weeks. I have increased my water and >>>>cranberry juice dramatically but nothing seems to stop my producing the >>>>stones at an amazing rate. >>>>This is getting very frustrating. >>>>Any suggestions from the group ???? >>>>Thanx >>>>Greg >– >remove YOURFOOT before responding

– remove YOURFOOT before responding

Response:

Why? Rebecca

– Hide quoted text — Show quoted text -> Drinking distilled water is dangerous. > Debs > Going out and buying a distiller was one of the first things i did when i > got diagnosed with Crohn’s disease. > Can’t say I ever had the displeasure of having stones  :) >>I can tell you how I cured myself of (calcium based) kidney stones long >>ago. >>About 26 years ago, I had a kidney stone come out, and X-rays showed I >>had a >>"cluster" of them in my left kidney. I wasn’t satisfied with the >>urologist’s >>suggestions (drink a lot of water, use less dairy products), so I looked >>around for different alternatives, and came across a couple of books – >>"The >>Choice is Clear"  by Dr. Allen E. Banik, and "The Shocking Truth About >>Water" by Paul Bragg. They both made the case for drinking and cooking >>with >>only (steam) distilled water, since tap, mineral and spring water, etc, >>contain inorganic minerals which the body doesn’t utilize well and can >>lead >>to kidney stones and many other problems. Distilled water is close to >>pure. >>Anyway, I was desperate so I purchased an electric water distiller (which >>is >>still working to this day), and drank only distilled water from then on. >>I >>had no further problems, and a number of years later follow-up X-rays >>showed >>that the "cluster" of stones in my kidney were gone except for 1 small >>one >>which still remained. Unfortunately that one later came out, before it >>dissolved like the others. That was 16 years ago, and I haven’t had a >>single >>problem with kidney stones since. I have continued to use a LOT of dairy >>products through all this, yet the stones disappeared with the distilled >>water regardless. >>There are people who don’t believe that inorganic minerals can be >>dangerous >>to your health, and some people don’t believe that drinking distilled >>water >>is good. That’s fine, but I swear by it. I don’t know if your kidney >>stones >>are calcium based, but you may want to consider trying distilled water. >>You >>should be able to buy it at a grocery or drug store if you don’t want to >>get >>a machine. Make sure it’s distilled water, and not mineral or spring >>water. >>When doctors say drink lots of (tap) water as a kidney stone treatment, I >>think that’s one of the worst things you can do! Make it distilled water >>and >>that may help. (You are producing stones so fast that I wonder if maybe >>something else is going on, though… ) >>Some more info (I’m not affiliated in any way with these sites, >>they just have relevant info, there’s lots more if you do a Google >>search): >>http://www.health-n-energy.com/ARTICLES/waterop.htm >>http://www.alphaomegafood.com/distilledwater.htm >>-B >>>Hi All, >>>I’ve been away from the group for a few years now. >>>After suffering with UC for several years, I had a colectomy and J-Pouch >>>about 6 years ago, and have been symptom free since the surgery and >>>doing >>>well. >>>I did however have Kidney Stones a few times after being diagnosed with >>UC, >>>but always about 2 years between attacks. And I’ve had stones since the >>>surgery but with about the same timing, approx 2 years between stones. >>BUT, >>>I started having the same pains about 6 months ago. A CT scan showed >>>that >>I >>>had stones in both kidneys. >>>My urologist scheduled me for the "scope" extraction / breaking of the >>>stones, and I passed a large stone fron the left kidney just before the >>>surgery (after about 36 hours of hospitalization from the pain of >>>course) >>>In the surgery they removed 2 small stones of approx 6-7mm in size, and >>>broke up a much larger stone. They had to go back in 2 weeks later to >>remove >>>more of the pieces, and a third procedure a week later to remove a stint >>>from the ureter. This was only 3 months ago >>>Since then I have been in the emergency room 2 times with stones, and >>>have >>>been passing smaller ones every 2 weeks. I have increased my water and >>>cranberry juice dramatically but nothing seems to stop my producing the >>>stones at an amazing rate. >>>This is getting very frustrating. >>>Any suggestions from the group ???? >>>Thanx >>>Greg > — > remove YOURFOOT before responding

Response:

Drinking distilled water is dangerous. Debs – Hide quoted text — Show quoted text – > Going out and buying a distiller was one of the first things i did when i > got diagnosed with Crohn’s disease. > Can’t say I ever had the displeasure of having stones  :) >I can tell you how I cured myself of (calcium based) kidney stones long >ago. >About 26 years ago, I had a kidney stone come out, and X-rays showed I had >a >"cluster" of them in my left kidney. I wasn’t satisfied with the >urologist’s >suggestions (drink a lot of water, use less dairy products), so I looked >around for different alternatives, and came across a couple of books – >"The >Choice is Clear"  by Dr. Allen E. Banik, and "The Shocking Truth About >Water" by Paul Bragg. They both made the case for drinking and cooking >with >only (steam) distilled water, since tap, mineral and spring water, etc, >contain inorganic minerals which the body doesn’t utilize well and can >lead >to kidney stones and many other problems. Distilled water is close to >pure. >Anyway, I was desperate so I purchased an electric water distiller (which >is >still working to this day), and drank only distilled water from then on. I >had no further problems, and a number of years later follow-up X-rays >showed >that the "cluster" of stones in my kidney were gone except for 1 small one >which still remained. Unfortunately that one later came out, before it >dissolved like the others. That was 16 years ago, and I haven’t had a >single >problem with kidney stones since. I have continued to use a LOT of dairy >products through all this, yet the stones disappeared with the distilled >water regardless. >There are people who don’t believe that inorganic minerals can be >dangerous >to your health, and some people don’t believe that drinking distilled >water >is good. That’s fine, but I swear by it. I don’t know if your kidney >stones >are calcium based, but you may want to consider trying distilled water. >You >should be able to buy it at a grocery or drug store if you don’t want to >get >a machine. Make sure it’s distilled water, and not mineral or spring >water. >When doctors say drink lots of (tap) water as a kidney stone treatment, I >think that’s one of the worst things you can do! Make it distilled water >and >that may help. (You are producing stones so fast that I wonder if maybe >something else is going on, though… ) >Some more info (I’m not affiliated in any way with these sites, >they just have relevant info, there’s lots more if you do a Google >search): >http://www.health-n-energy.com/ARTICLES/waterop.htm >http://www.alphaomegafood.com/distilledwater.htm >-B >>Hi All, >>I’ve been away from the group for a few years now. >>After suffering with UC for several years, I had a colectomy and J-Pouch >>about 6 years ago, and have been symptom free since the surgery and doing >>well. >>I did however have Kidney Stones a few times after being diagnosed with >UC, >>but always about 2 years between attacks. And I’ve had stones since the >>surgery but with about the same timing, approx 2 years between stones. >BUT, >>I started having the same pains about 6 months ago. A CT scan showed that >I >>had stones in both kidneys. >>My urologist scheduled me for the "scope" extraction / breaking of the >>stones, and I passed a large stone fron the left kidney just before the >>surgery (after about 36 hours of hospitalization from the pain of course) >>In the surgery they removed 2 small stones of approx 6-7mm in size, and >>broke up a much larger stone. They had to go back in 2 weeks later to >remove >>more of the pieces, and a third procedure a week later to remove a stint >>from the ureter. This was only 3 months ago >>Since then I have been in the emergency room 2 times with stones, and >>have >>been passing smaller ones every 2 weeks. I have increased my water and >>cranberry juice dramatically but nothing seems to stop my producing the >>stones at an amazing rate. >>This is getting very frustrating. >>Any suggestions from the group ???? >>Thanx >>Greg

– remove YOURFOOT before responding

Response:

Take special note of this paragraph from the second link I provided: "The most common mineral in ground water is calcium carbonate (lime), which is also a primary ingredient in making concrete and cement.  If you have ever seen a large stalagmite or stalactite in a limestone cavern, you can visualize how this hard rock forms, one drop at a time in a cave…or in the inside of your arteries, a kidney stone, in your joints, etc.  Another way of actually seeing these mineral deposits is to pour water from your kitchen sink into a pan.  Put that pan of water in the sun and let it evaporate.  Or if you are in a hurry, boil it.  Either way, once the water has evaporated, you will find a solid coat of mineral deposits left on the side and bottom of the pan.  These are the same deposits left in your arteries and the rest of your body."

Response:

– Hide quoted text — Show quoted text -> Hi All, … > I did however have Kidney Stones a few times after being diagnosed with > UC, > but always about 2 years between attacks. And I’ve had stones since the > surgery but with about the same timing, approx 2 years between stones. > BUT, > I started having the same pains about 6 months ago. A CT scan showed that > I > had stones in both kidneys. …. > Since then I have been in the emergency room 2 times with stones, and have > been passing smaller ones every 2 weeks. I have increased my water and > cranberry juice dramatically but nothing seems to stop my producing the > stones at an amazing rate. > This is getting very frustrating. > Any suggestions from the group ????

Hi, This is more of a question for anyone who knows more about this than it is a suggestion but… Would it be possible just to have the nerves to the kidneys cut so that someone with chronic kidney stones didn’t feel the pain? In a kidney transplant do they re-attach the nerves? I’m not an expert and I hope I’m not spreading false information but I would guess they don’t. So, if transplanted kidneys can function with out nerve connections, could that be a solution for chronic kidney stones?  Are kidney stones life threatening or just painful?  Would there be any danger if someone had kidney stones and didn’t know because he couldn’t feel them?  What do people with transplanted kidneys do about stones? C.M. – Hide quoted text — Show quoted text -> Thanx > Greg

Response:

Pain responses are most certainly needed! A total obstruction of the ureter (which does happen with kidney stones) draining the kidney could cause the kidney to go into complete renal failure. The person would then lose the kidney completely. This could be a life threatening situation if the urine and infection that is in the kidney goes stagnant, then septic, causing shock and possible death. (Infection would have to sit untreated  a very long time for this to happen which is possible if you don’t have pain responses.) Bad, bad idea. Pain serves a purpose, don’t be too quick to get rid of it. Nina

Response:

Going out and buying a distiller was one of the first things i did when i got diagnosed with Crohn’s disease. Can’t say I ever had the displeasure of having stones  :)

– Hide quoted text — Show quoted text ->I can tell you how I cured myself of (calcium based) kidney stones long >ago. > About 26 years ago, I had a kidney stone come out, and X-rays showed I had > a > "cluster" of them in my left kidney. I wasn’t satisfied with the > urologist’s > suggestions (drink a lot of water, use less dairy products), so I looked > around for different alternatives, and came across a couple of books – > "The > Choice is Clear"  by Dr. Allen E. Banik, and "The Shocking Truth About > Water" by Paul Bragg. They both made the case for drinking and cooking > with > only (steam) distilled water, since tap, mineral and spring water, etc, > contain inorganic minerals which the body doesn’t utilize well and can > lead > to kidney stones and many other problems. Distilled water is close to > pure. > Anyway, I was desperate so I purchased an electric water distiller (which > is > still working to this day), and drank only distilled water from then on. I > had no further problems, and a number of years later follow-up X-rays > showed > that the "cluster" of stones in my kidney were gone except for 1 small one > which still remained. Unfortunately that one later came out, before it > dissolved like the others. That was 16 years ago, and I haven’t had a > single > problem with kidney stones since. I have continued to use a LOT of dairy > products through all this, yet the stones disappeared with the distilled > water regardless. > There are people who don’t believe that inorganic minerals can be > dangerous > to your health, and some people don’t believe that drinking distilled > water > is good. That’s fine, but I swear by it. I don’t know if your kidney > stones > are calcium based, but you may want to consider trying distilled water. > You > should be able to buy it at a grocery or drug store if you don’t want to > get > a machine. Make sure it’s distilled water, and not mineral or spring > water. > When doctors say drink lots of (tap) water as a kidney stone treatment, I > think that’s one of the worst things you can do! Make it distilled water > and > that may help. (You are producing stones so fast that I wonder if maybe > something else is going on, though… ) > Some more info (I’m not affiliated in any way with these sites, > they just have relevant info, there’s lots more if you do a Google > search): > http://www.health-n-energy.com/ARTICLES/waterop.htm > http://www.alphaomegafood.com/distilledwater.htm > -B > Hi All, > I’ve been away from the group for a few years now. > After suffering with UC for several years, I had a colectomy and J-Pouch > about 6 years ago, and have been symptom free since the surgery and doing > well. > I did however have Kidney Stones a few times after being diagnosed with > UC, > but always about 2 years between attacks. And I’ve had stones since the > surgery but with about the same timing, approx 2 years between stones. > BUT, > I started having the same pains about 6 months ago. A CT scan showed that > I > had stones in both kidneys. > My urologist scheduled me for the "scope" extraction / breaking of the > stones, and I passed a large stone fron the left kidney just before the > surgery (after about 36 hours of hospitalization from the pain of course) > In the surgery they removed 2 small stones of approx 6-7mm in size, and > broke up a much larger stone. They had to go back in 2 weeks later to > remove > more of the pieces, and a third procedure a week later to remove a stint > from the ureter. This was only 3 months ago > Since then I have been in the emergency room 2 times with stones, and > have > been passing smaller ones every 2 weeks. I have increased my water and > cranberry juice dramatically but nothing seems to stop my producing the > stones at an amazing rate. > This is getting very frustrating. > Any suggestions from the group ???? > Thanx > Greg

Response:

Hi All, I’ve been away from the group for a few years now. After suffering with UC for several years, I had a colectomy and J-Pouch about 6 years ago, and have been symptom free since the surgery and doing well. I did however have Kidney Stones a few times after being diagnosed with UC, but always about 2 years between attacks. And I’ve had stones since the surgery but with about the same timing, approx 2 years between stones. BUT, I started having the same pains about 6 months ago. A CT scan showed that I had stones in both kidneys. My urologist scheduled me for the "scope" extraction / breaking of the stones, and I passed a large stone fron the left kidney just before the surgery (after about 36 hours of hospitalization from the pain of course) In the surgery they removed 2 small stones of approx 6-7mm in size, and broke up a much larger stone. They had to go back in 2 weeks later to remove more of the pieces, and a third procedure a week later to remove a stint from the ureter. This was only 3 months ago Since then I have been in the emergency room 2 times with stones, and have been passing smaller ones every 2 weeks. I have increased my water and cranberry juice dramatically but nothing seems to stop my producing the stones at an amazing rate. This is getting very frustrating. Any suggestions from the group ???? Thanx Greg

Response:

Hi Greg, I’m sorry to hear of your predicament.  I don’t have advice, except to ask if you’ve discussed what type of stones you are getting and if diet is effecting their development.  Good luck!  mgbio – Hide quoted text — Show quoted text – > Hi All, > I’ve been away from the group for a few years now. > After suffering with UC for several years, I had a colectomy and J-Pouch > about 6 years ago, and have been symptom free since the surgery and doing > well. > I did however have Kidney Stones a few times after being diagnosed with UC, > but always about 2 years between attacks. And I’ve had stones since the > surgery but with about the same timing, approx 2 years between stones. BUT, > I started having the same pains about 6 months ago. A CT scan showed that I > had stones in both kidneys. > My urologist scheduled me for the "scope" extraction / breaking of the > stones, and I passed a large stone fron the left kidney just before the > surgery (after about 36 hours of hospitalization from the pain of course) > In the surgery they removed 2 small stones of approx 6-7mm in size, and > broke up a much larger stone. They had to go back in 2 weeks later to remove > more of the pieces, and a third procedure a week later to remove a stint > from the ureter. This was only 3 months ago > Since then I have been in the emergency room 2 times with stones, and have > been passing smaller ones every 2 weeks. I have increased my water and > cranberry juice dramatically but nothing seems to stop my producing the > stones at an amazing rate. > This is getting very frustrating. > Any suggestions from the group ???? > Thanx > Greg

Response:

Greg, There are different types of kidney stones, some contain calcium and some don’t. (Among other differences). Your urologist should have had a pathology report done on the stones extracted. This would give you both the information you need to make diet adjustments or possibly take advantage of medications. If your stones are calcified there are dietary changes, such as cutting down dairy that help some people.  (I once had a patient who was 2 months post partum with some wicked stones, her first ones. She had heartburn through her pregnancy and was eating antacids by the handfull.  Her Doctor told her the antacids were reasonably safe but didn’t tell her that if she had too many she at risk for kidney stones. No one made the connection until I talked to her while doing an IVP diagnostic exam.) As for the cranberry juice, I don’t see how that would help. It is good for kidney and bladder infections but I don’t see how that would prevent stone formation. Some people have a hard time with kidney stones. Your best bet is to find the best urologist you can. Get information on your particular stones and research diet and medication options. Good luck, Nina

Response:

I can tell you how I cured myself of (calcium based) kidney stones long ago. About 26 years ago, I had a kidney stone come out, and X-rays showed I had a "cluster" of them in my left kidney. I wasn’t satisfied with the urologist’s suggestions (drink a lot of water, use less dairy products), so I looked around for different alternatives, and came across a couple of books – "The Choice is Clear"  by Dr. Allen E. Banik, and "The Shocking Truth About Water" by Paul Bragg. They both made the case for drinking and cooking with only (steam) distilled water, since tap, mineral and spring water, etc, contain inorganic minerals which the body doesn’t utilize well and can lead to kidney stones and many other problems. Distilled water is close to pure. Anyway, I was desperate so I purchased an electric water distiller (which is still working to this day), and drank only distilled water from then on. I had no further problems, and a number of years later follow-up X-rays showed that the "cluster" of stones in my kidney were gone except for 1 small one which still remained. Unfortunately that one later came out, before it dissolved like the others. That was 16 years ago, and I haven’t had a single problem with kidney stones since. I have continued to use a LOT of dairy products through all this, yet the stones disappeared with the distilled water regardless. There are people who don’t believe that inorganic minerals can be dangerous to your health, and some people don’t believe that drinking distilled water is good. That’s fine, but I swear by it. I don’t know if your kidney stones are calcium based, but you may want to consider trying distilled water. You should be able to buy it at a grocery or drug store if you don’t want to get a machine. Make sure it’s distilled water, and not mineral or spring water. When doctors say drink lots of (tap) water as a kidney stone treatment, I think that’s one of the worst things you can do! Make it distilled water and that may help. (You are producing stones so fast that I wonder if maybe something else is going on, though… ) Some more info (I’m not affiliated in any way with these sites, they just have relevant info, there’s lots more if you do a Google search): http://www.health-n-energy.com/ARTICLES/waterop.htm http://www.alphaomegafood.com/distilledwater.htm -B

– Hide quoted text — Show quoted text -> Hi All, > I’ve been away from the group for a few years now. > After suffering with UC for several years, I had a colectomy and J-Pouch > about 6 years ago, and have been symptom free since the surgery and doing > well. > I did however have Kidney Stones a few times after being diagnosed with UC, > but always about 2 years between attacks. And I’ve had stones since the > surgery but with about the same timing, approx 2 years between stones. BUT, > I started having the same pains about 6 months ago. A CT scan showed that I > had stones in both kidneys. > My urologist scheduled me for the "scope" extraction / breaking of the > stones, and I passed a large stone fron the left kidney just before the > surgery (after about 36 hours of hospitalization from the pain of course) > In the surgery they removed 2 small stones of approx 6-7mm in size, and > broke up a much larger stone. They had to go back in 2 weeks later to remove > more of the pieces, and a third procedure a week later to remove a stint > from the ureter. This was only 3 months ago > Since then I have been in the emergency room 2 times with stones, and have > been passing smaller ones every 2 weeks. I have increased my water and > cranberry juice dramatically but nothing seems to stop my producing the > stones at an amazing rate. > This is getting very frustrating. > Any suggestions from the group ???? > Thanx > Greg

Response:

Question:

YES!!!  Are they working?  Is there any published data regarding remission and/or potential "cure" rates?? Inquiring minds and bodies are eager to know!!! ~Lisa S. Quinn

– Hide quoted text — Show quoted text ->I bought it. I agree that it’s super expensive but don’t you think it’s > worth it? Imagine being totally cured! How much money would you pay for > that? Wouldn’t you give everything you have?

Response:

Hi everyone, Raff just had an interesting conversation with his GP about using worms as crohns therapy.   We looked into it and found that there has been a couple of studies done in the States, UK and Australia. Apparently the treatment is quite succesful once you get past the gross factor (you have to eat worm eggs). Anyone game to try this?? Check out this website: www.medicalnewstoday.com/medicalnews.php?newsid=17767&nfid=hww Take care all Becs

Response:

I’d love to try it but have you seen the prices??  Prohibitive for most people esp. since insurance companies won’t touch it – Hide quoted text — Show quoted text – > Hi everyone, > Raff just had an interesting conversation with his GP about using worms as > crohns therapy. > We looked into it and found that there has been a couple of studies done > in the States, UK and Australia. Apparently the treatment is quite > succesful once you get past the gross factor (you have to eat worm eggs). > Anyone game to try this?? > Check out this website: > www.medicalnewstoday.com/medicalnews.php?newsid=17767&nfid=hww > Take care all > Becs

Response:

Please describe your results with the worms.  Also, how often do you take them and how much did they cost.  No one should ever be denied health because of price! Mel – Hide quoted text — Show quoted text ->I bought it. I agree that it’s super expensive but don’t you think it’s >worth it? Imagine being totally cured! How much money would you pay for >that? Wouldn’t you give everything you have?

Response:

How are you doing on the worms?  I agree with you that health is worth everything. – Hide quoted text — Show quoted text – >I bought it. I agree that it’s super expensive but don’t you think it’s >worth it? Imagine being totally cured! How much money would you pay for >that? Wouldn’t you give everything you have?

Response:

so, do tell, what happened? jeff

– Hide quoted text — Show quoted text -> I bought it. I agree that it’s super expensive but don’t you think it’s > worth it? Imagine being totally cured! How much money would you pay for > that? Wouldn’t you give everything you have?

Response:

Question:

Their is nothing unusual about crohns and anti-depressants.  If I miss mine I really notice the depression,  you should talk to your GI about them, I got mine from her. Good luck – Paul – Hide quoted text — Show quoted text – >are they related? i have been suffering from depression for the last 6 >months or so and havent told my parents , but ithink its mainly due to teh >fact that i’ve been sick with crones and it makes me so sad to not be able >to do the things i usto do i usto play competitive baseball, basketball, >go out to eat with my friends. now im so afraid icant even go for a car >ride in a friends car cuz im afraid my stomach might hurt while were >driving. now almost everything i want to do is effected by my active >crohnes. >my doctor is thinking about putting me on remicade, right now im on 6mp >and flagyl and it dont do crap. i took primal defense over the summer and >it helped a lot but for some reason it just stopped working. i am going to >buy some immodium tomorrow hopefully this will help.

Response:

There is supposed to be better warning and info for the dr’s now on these meds esp. for young adults.  UM MOM Susan – Hide quoted text — Show quoted text -> just be careful about some of these antidepressants.  they can be very > addicting and can be worse than crohns to get off from.  i recently read > some about the popular one’s it seems like every other person you talk to > are on.  some have had their lives and health ruined.  just have both eyes > open if you chose this route. > jeff > Mike, you probably developed a depression from having a chronic illness. > Talk to your doctor, he may be able to prescribe something for you that > will > help lessen the depressive feelings.  Alot of the people in this > newsgroup > are on antidepressants.  I take Zoloft and it helps.  It is hard to deal > with not feeling 100% all the time.  Things you like to do are now things > you can’t do as well or not at all.  The constant reminder that you have > Crohn’s leads you to think that you just want to be normal.  Even if it > is > just for a few days.  Hang in there.  Just remember, there are so many of > us > experiencing what you are going through.  Let that thought help you > remember > that you are not alone. > Tony > > are they related? i have been suffering from depression for the last 6 > > months or so and havent told my parents , but ithink its mainly due to > teh > > fact that i’ve been sick with crones and it makes me so sad to not be > able > > to do the things i usto do i usto play competitive baseball, > > basketball, > > go out to eat with my friends. now im so afraid icant even go for a car > > ride in a friends car cuz im afraid my stomach might hurt while were > > driving. now almost everything i want to do is effected by my active > > crohnes. > > my doctor is thinking about putting me on remicade, right now im on 6mp > > and flagyl and it dont do crap. i took primal defense over the summer > and > > it helped a lot but for some reason it just stopped working. i am going > to > > buy some immodium tomorrow hopefully this will help.

Response:

Hi Mike, Don’t be afraid to talk to your doctor about your depression problems. My first doctor was very clinical, he didn’t give a care about life issues and dealing with chronic pain.  My second GP is really patient friendly, quite compassionate and seems to "feel" what the patient is going through. Thanks, Nina K. – Hide quoted text — Show quoted text – > are they related? i have been suffering from depression for the last 6 > months or so and havent told my parents , but ithink its mainly due to teh > fact that i’ve been sick with crones and it makes me so sad to not be able > to do the things i usto do i usto play competitive baseball, basketball, > go out to eat with my friends. now im so afraid icant even go for a car > ride in a friends car cuz im afraid my stomach might hurt while were > driving. now almost everything i want to do is effected by my active > crohnes. > my doctor is thinking about putting me on remicade, right now im on 6mp > and flagyl and it dont do crap. i took primal defense over the summer and > it helped a lot but for some reason it just stopped working. i am going to > buy some immodium tomorrow hopefully this will help.

Response:

YES!  It is not uncommon for chronic illnesses and depression to be related, especially inflammatory ones.  No one will admit the direct cause, but seretonin is used in the inflammation process as well as a mood enhancer.  When your body is constantly in "crisis" thinking there is inflammation, there is not enough seretonin left to keep mood properly elevated.  Proper treatment with anti-depressants and psychotherapy (used together) will help you cope.  Don’t hesitate to avail yourself of both for this medical condition.  mgbio – Hide quoted text — Show quoted text – > are they related? i have been suffering from depression for the last 6 > months or so and havent told my parents , but ithink its mainly due to teh > fact that i’ve been sick with crones and it makes me so sad to not be able > to do the things i usto do i usto play competitive baseball, basketball, > go out to eat with my friends. now im so afraid icant even go for a car > ride in a friends car cuz im afraid my stomach might hurt while were > driving. now almost everything i want to do is effected by my active > crohnes. > my doctor is thinking about putting me on remicade, right now im on 6mp > and flagyl and it dont do crap. i took primal defense over the summer and > it helped a lot but for some reason it just stopped working. i am going to > buy some immodium tomorrow hopefully this will help.

Response:

thanks guys !!

Response:

just be careful about some of these antidepressants.  they can be very addicting and can be worse than crohns to get off from.  i recently read some about the popular one’s it seems like every other person you talk to are on.  some have had their lives and health ruined.  just have both eyes open if you chose this route. jeff

– Hide quoted text — Show quoted text -> Mike, you probably developed a depression from having a chronic illness. > Talk to your doctor, he may be able to prescribe something for you that will > help lessen the depressive feelings.  Alot of the people in this newsgroup > are on antidepressants.  I take Zoloft and it helps.  It is hard to deal > with not feeling 100% all the time.  Things you like to do are now things > you can’t do as well or not at all.  The constant reminder that you have > Crohn’s leads you to think that you just want to be normal.  Even if it is > just for a few days.  Hang in there.  Just remember, there are so many of us > experiencing what you are going through.  Let that thought help you remember > that you are not alone. > Tony > are they related? i have been suffering from depression for the last 6 > months or so and havent told my parents , but ithink its mainly due to teh > fact that i’ve been sick with crones and it makes me so sad to not be able > to do the things i usto do i usto play competitive baseball, basketball, > go out to eat with my friends. now im so afraid icant even go for a car > ride in a friends car cuz im afraid my stomach might hurt while were > driving. now almost everything i want to do is effected by my active > crohnes. > my doctor is thinking about putting me on remicade, right now im on 6mp > and flagyl and it dont do crap. i took primal defense over the summer and > it helped a lot but for some reason it just stopped working. i am going to > buy some immodium tomorrow hopefully this will help.

Response:

Tony, You are definately righ.  A big illneess like crohn’s is very stressful on the body and that definately provokes biochemical depression. Thanks, Mike — To reply via email remove the X’s from my email address:

– Hide quoted text — Show quoted text -> Mike, you probably developed a depression from having a chronic illness. > Talk to your doctor, he may be able to prescribe something for you that will > help lessen the depressive feelings.  Alot of the people in this newsgroup > are on antidepressants.  I take Zoloft and it helps.  It is hard to deal > with not feeling 100% all the time.  Things you like to do are now things > you can’t do as well or not at all.  The constant reminder that you have > Crohn’s leads you to think that you just want to be normal.  Even if it is > just for a few days.  Hang in there.  Just remember, there are so many of us > experiencing what you are going through.  Let that thought help you remember > that you are not alone. > Tony > are they related? i have been suffering from depression for the last 6 > months or so and havent told my parents , but ithink its mainly due to teh > fact that i’ve been sick with crones and it makes me so sad to not be able > to do the things i usto do i usto play competitive baseball, basketball, > go out to eat with my friends. now im so afraid icant even go for a car > ride in a friends car cuz im afraid my stomach might hurt while were > driving. now almost everything i want to do is effected by my active > crohnes. > my doctor is thinking about putting me on remicade, right now im on 6mp > and flagyl and it dont do crap. i took primal defense over the summer and > it helped a lot but for some reason it just stopped working. i am going to > buy some immodium tomorrow hopefully this will help.

Response:

are they related? i have been suffering from depression for the last 6 months or so and havent told my parents , but ithink its mainly due to teh fact that i’ve been sick with crones and it makes me so sad to not be able to do the things i usto do i usto play competitive baseball, basketball, go out to eat with my friends. now im so afraid icant even go for a car ride in a friends car cuz im afraid my stomach might hurt while were driving. now almost everything i want to do is effected by my active crohnes. my doctor is thinking about putting me on remicade, right now im on 6mp and flagyl and it dont do crap. i took primal defense over the summer and it helped a lot but for some reason it just stopped working. i am going to buy some immodium tomorrow hopefully this will help.

Response:

Mike, you probably developed a depression from having a chronic illness. Talk to your doctor, he may be able to prescribe something for you that will help lessen the depressive feelings.  Alot of the people in this newsgroup are on antidepressants.  I take Zoloft and it helps.  It is hard to deal with not feeling 100% all the time.  Things you like to do are now things you can’t do as well or not at all.  The constant reminder that you have Crohn’s leads you to think that you just want to be normal.  Even if it is just for a few days.  Hang in there.  Just remember, there are so many of us experiencing what you are going through.  Let that thought help you remember that you are not alone. Tony

– Hide quoted text — Show quoted text -> are they related? i have been suffering from depression for the last 6 > months or so and havent told my parents , but ithink its mainly due to teh > fact that i’ve been sick with crones and it makes me so sad to not be able > to do the things i usto do i usto play competitive baseball, basketball, > go out to eat with my friends. now im so afraid icant even go for a car > ride in a friends car cuz im afraid my stomach might hurt while were > driving. now almost everything i want to do is effected by my active > crohnes. > my doctor is thinking about putting me on remicade, right now im on 6mp > and flagyl and it dont do crap. i took primal defense over the summer and > it helped a lot but for some reason it just stopped working. i am going to > buy some immodium tomorrow hopefully this will help.

Response:

Question:

Dextran doesn’t contain iron. It’s based on dextrose, sugar. Maybe you got dextran with some form of iron? Debs – Hide quoted text — Show quoted text – > I get dextran. >Iron I had was call Venofer…they have a website… >>I had an iron infusion once when my iron was critically low.  At the time >>I was an inpatient in the hospital.  I remember that they first gave me a >>test dosage, then they took a ton of precautions when giving me the iron, >>making sure that both benedryl and epinephrine were present.  Both doctors >>and nurses were nervous and grateful when the procedure was over and I had >>no adverse effects.  I would not recommend this as a regular treatment >>unless absolutely necessary and with a staff I fully trusted. >>mgbio >>>Does any at all please have ANY information regarding using iron >>>infusion >>>with regrards to crohns patients >>>If you have information at all any pointers to references or other sites >>>I >>>would genuinely appreciate your input >>>regards >>>David

– remove YOURFOOT before responding

Response:

I get dextran.

– Hide quoted text — Show quoted text -> Iron I had was call Venofer…they have a website… >I had an iron infusion once when my iron was critically low.  At the time >I was an inpatient in the hospital.  I remember that they first gave me a >test dosage, then they took a ton of precautions when giving me the iron, >making sure that both benedryl and epinephrine were present.  Both doctors >and nurses were nervous and grateful when the procedure was over and I had >no adverse effects.  I would not recommend this as a regular treatment >unless absolutely necessary and with a staff I fully trusted. > mgbio >> Does any at all please have ANY information regarding using iron >> infusion >> with regrards to crohns patients >> If you have information at all any pointers to references or other sites >> I >> would genuinely appreciate your input >> regards >> David

Response:

Iron I had was call Venofer…they have a website…

– Hide quoted text — Show quoted text ->I had an iron infusion once when my iron was critically low.  At the time I >was an inpatient in the hospital.  I remember that they first gave me a >test dosage, then they took a ton of precautions when giving me the iron, >making sure that both benedryl and epinephrine were present.  Both doctors >and nurses were nervous and grateful when the procedure was over and I had >no adverse effects.  I would not recommend this as a regular treatment >unless absolutely necessary and with a staff I fully trusted. > mgbio > Does any at all please have ANY information regarding using iron infusion > with regrards to crohns patients > If you have information at all any pointers to references or other sites > I > would genuinely appreciate your input > regards > David

Response:

My blood count was around 8…hematologist gave me 10 iron infusion (one a week)…did very well with it…now my hemoglobin is around 13…energy level is ok…only drawback is it’s expensive; however, my insurance paid it all…good luck

– Hide quoted text — Show quoted text ->I had an iron infusion once when my iron was critically low.  At the time I >was an inpatient in the hospital.  I remember that they first gave me a >test dosage, then they took a ton of precautions when giving me the iron, >making sure that both benedryl and epinephrine were present.  Both doctors >and nurses were nervous and grateful when the procedure was over and I had >no adverse effects.  I would not recommend this as a regular treatment >unless absolutely necessary and with a staff I fully trusted. > mgbio > Does any at all please have ANY information regarding using iron infusion > with regrards to crohns patients > If you have information at all any pointers to references or other sites > I > would genuinely appreciate your input > regards > David

Response:

I had an iron infusion once when my iron was critically low.  At the time I was an inpatient in the hospital.  I remember that they first gave me a test dosage, then they took a ton of precautions when giving me the iron, making sure that both benedryl and epinephrine were present.  Both doctors and nurses were nervous and grateful when the procedure was over and I had no adverse effects.  I would not recommend this as a regular treatment unless absolutely necessary and with a staff I fully trusted. mgbio – Hide quoted text — Show quoted text – > Does any at all please have ANY information regarding using iron infusion > with regrards to crohns patients > If you have information at all any pointers to references or other sites I > would genuinely appreciate your input > regards > David

Response:

Does any at all please have ANY information regarding using iron infusion with regrards to crohns patients If you have information at all any pointers to references or other sites I would genuinely appreciate your input regards David

Response:

I get iron infusions every 3-4 weeks.  I need to get them after I had my first surgery and my blood tests showed that I was anemic.  I get Benedryll to suppress any allergic reaction I may have to the iron.  I usually get 100mg of iron over an hour.  For the next two days after, I experience a little constipation and muscle aches.  I have been going for iron for 10 months now and I am just starting to replenish my stores.  My hemoglobin is back to normal. Talk to your gastro and find an oncologist.  I tried the iron pills route with aggrevation and a severe upset stomach.  The infusion is much more efficient.

– Hide quoted text — Show quoted text -> Does any at all please have ANY information regarding using iron infusion > with regrards to crohns patients > If you have information at all any pointers to references or other sites I > would genuinely appreciate your input > regards > David

Response:

Question:

Hi all! Go to remicade.com, you can print out the form for youself and your doctor to fill out. It does have some questions about income, but it’s pretty easy. Good luck. – Hide quoted text — Show quoted text – > Suggest you check into the Remicaid Assistance plan – from the mfg. for low > income people.  Ask your Doctor. > — > Bob Alston > bobalston9   AT  aol  DOT  com > so far my imuran isnt working, and doctor say’s one more option because of > my age. > im only 34 and so far this flare up isnt going away. i just finished some > steroid enema’s and still > bleeding heavier than i did during my monthly cycles. > even with FDA approval, there is no possible way i could afford the > remicide. > help? > debi > — > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

Move to Canada and become a Canadian citizen! I was part of the trials in Canada and received it for free, although we get it for free anyways.  I just got early access to it.  Personally, it did nothing for my Crohn’s, although it did help me gain some weight. – Hide quoted text — Show quoted text – > so far my imuran isnt working, and doctor say’s one more option because of > my age. > im only 34 and so far this flare up isnt going away. i just finished some > steroid enema’s and still > bleeding heavier than i did during my monthly cycles. > even with FDA approval, there is no possible way i could afford the > remicide. >  help? > debi

Response:

If you don’t have insurance the drug company may have some type of program for you to recieve low or no cost treatment.  Your doctor can find out from his drug rep. Best of luck, Brian

– Hide quoted text — Show quoted text -> Move to Canada and become a Canadian citizen! > I was part of the trials in Canada and received it for free, although we > get it for free anyways.  I just got early access to it.  Personally, it > did nothing for my Crohn’s, although it did help me gain some weight. > so far my imuran isnt working, and doctor say’s one more option because > of my age. > im only 34 and so far this flare up isnt going away. i just finished some > steroid enema’s and still > bleeding heavier than i did during my monthly cycles. > even with FDA approval, there is no possible way i could afford the > remicide. >  help? > debi

Response:

>> even with FDA approval, there is no possible way i could afford the > remicide. >  help? > debi

Hi Debi-     Go to Centocor.com – I think there is a contact phone number available. Remicade is provided at reduced cost/free to people through a program they offer.  I hope the Remicade works for you!  I’ve been on it for a while now, and it has helped. Get/stay healthy, Kathi

Response:

Suggest you check into the Remicaid Assistance plan – from the mfg. for low income people.  Ask your Doctor. — Bob Alston bobalston9   AT  aol  DOT  com

> so far my imuran isnt working, and doctor say’s one more option because of > my age. > im only 34 and so far this flare up isnt going away. i just finished some > steroid enema’s and still > bleeding heavier than i did during my monthly cycles. > even with FDA approval, there is no possible way i could afford the > remicide. > help? > debi

— Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

> Besides, Remicade should not be used w/o one of the above or immuran, > which you are currently using, to prevent a build up of antibodies and > a potential allergic reaction.

Has this been the case in the group’s personal experience? I’m getting nervous now! I’ve had three infusions (more than three years ago), with another three to come (subject to MRI scan). I am unable to take azathioprine or 6MP, and the methotrexate was stopped over a year ago having been found to be ineffective for me (fistulizing crohn’s). — remove pam etc

Response:

This is the current trend of thinking in dealing with Remicade.  Talk with your doctor about it.  I had many initial treatments without any of the above and my GI would not hesitate to give me Remicade again if needed.  However, he would be cautious and might proceed the infusion with a short (3 day) course of pred.  Good luck!  mgbio – Hide quoted text — Show quoted text ->Besides, Remicade should not be used w/o one of the above or immuran, >which you are currently using, to prevent a build up of antibodies and >a potential allergic reaction. > Has this been the case in the group’s personal experience? I’m getting > nervous now! > I’ve had three infusions (more than three years ago), with another three to > come (subject to MRI scan). I am unable to take azathioprine or 6MP, and > the methotrexate was stopped over a year ago having been found to be > ineffective for me (fistulizing crohn’s).

Response:

i have been on remicade for almost 3 years.  the first year we could not find an immunosuppresant to agree with me.  i had no problems, not to say this is the case with everyone. jeff

– Hide quoted text — Show quoted text -> Besides, Remicade should not be used w/o one of the above or immuran, > which you are currently using, to prevent a build up of antibodies and > a potential allergic reaction. > Has this been the case in the group’s personal experience? I’m getting > nervous now! > I’ve had three infusions (more than three years ago), with another three to > come (subject to MRI scan). I am unable to take azathioprine or 6MP, and > the methotrexate was stopped over a year ago having been found to be > ineffective for me (fistulizing crohn’s). > — > remove pam etc

Response:

Only one option left?   Have you tried adding Proanthocyadins to your nutritonal regimen? About a week ago there was a discussion about Remicade and it’s increase to lymp cancer.

– Hide quoted text — Show quoted text -> so far my imuran isnt working, and doctor say’s one more option because of > my age. > im only 34 and so far this flare up isnt going away. i just finished some > steroid enema’s and still > bleeding heavier than i did during my monthly cycles. > even with FDA approval, there is no possible way i could afford the > remicide. > help? > debi

Response:

so far my imuran isnt working, and doctor say’s one more option because of my age. im only 34 and so far this flare up isnt going away. i just finished some steroid enema’s and still bleeding heavier than i did during my monthly cycles. even with FDA approval, there is no possible way i could afford the remicide.  help? debi

Response:

Has your doctor considered switching you to 6MP (a sister drug so might not be worth trying) or methotrexate?  Besides, Remicade should not be used w/o one of the above or immuran, which you are currently using, to prevent a build up of antibodies and a potential allergic reaction.  mgbio – Hide quoted text — Show quoted text – > so far my imuran isnt working, and doctor say’s one more option because of > my age. > im only 34 and so far this flare up isnt going away. i just finished some > steroid enema’s and still > bleeding heavier than i did during my monthly cycles. > even with FDA approval, there is no possible way i could afford the > remicide. >  help? > debi

Response:

not sure i understand.  you have one more option?  if so, did he say what that was? there are a number of options.  biological treatment for immunomodulator (remicade) is only one option.  there are other immunomodulators.  they work in different ways.  imuran didn’t work for me either.  currently on methotrexate after trying 3 previously.  i use remicade also. jeff

– Hide quoted text — Show quoted text -> so far my imuran isnt working, and doctor say’s one more option because of > my age. > im only 34 and so far this flare up isnt going away. i just finished some > steroid enema’s and still > bleeding heavier than i did during my monthly cycles. > even with FDA approval, there is no possible way i could afford the > remicide. >  help? > debi

Response:

Question:

She does take probiotics.. well, she *did*.  Here’s the story… I may have told it here before but can’t remember so I’ll tell it again. We convinced her doctors to try RMAT (wasn’t easy).  Her improvement seemed miraculous…. within 1-2 months she appeared to be in remission.  Then in July, her doctor decided to do a colonoscopy (I guess the absence of symptoms – eating normally, no fevers, firm stools with no blood, etc. after 8 months of a major flare – just wasn’t enough for the skeptic in him; he had to see it with his own eyes).  The day before the colonoscopy she was her old self, for the first time in many, many months and the colonoscopy showed a nearly-healed colon. The day after, she was sicker than ever before and has been sick ever since. She hasn’t eaten since the colonoscopy.  That’s why I say she *was* on probiotics.  She can’t eat now and hasn’t eaten since July.  My sister tries to make her take her meds, but she throws it up alot of the time (both the probiotics and the antibiotics). We don’t know what to do.  My sister just put her on methotrexate and she’ll be starting Remicade again on Friday.  It didn’t work before – immune suppression actually seems to make her sicker, though her doctors refuse to see cause and effect.  Since she started methotrexate, she’s gone from having BMs 5 times a day to literally every hour, all day and all night. I was hoping maybe there’s a reason Biaxin is better so we could convince them to try it, before they make her even sicker than they already have with their medicine.

Response:

Sounds to me like they ripped her inside with the scope. Has she had any blood loss? I would change doctors now, or at least get a second opinion. Mike – Hide quoted text — Show quoted text – >She does take probiotics.. well, she *did*.  Here’s the story… I may have >told it here before but can’t remember so I’ll tell it again. >We convinced her doctors to try RMAT (wasn’t easy).  Her improvement seemed >miraculous…. within 1-2 months she appeared to be in remission.  Then in >July, her doctor decided to do a colonoscopy (I guess the absence of >symptoms – eating normally, no fevers, firm stools with no blood, etc. after >8 months of a major flare – just wasn’t enough for the skeptic in him; he >had to see it with his own eyes).  The day before the colonoscopy she was >her old self, for the first time in many, many months and the colonoscopy >showed a nearly-healed colon. >The day after, she was sicker than ever before and has been sick ever since. >She hasn’t eaten since the colonoscopy.  That’s why I say she *was* on >probiotics.  She can’t eat now and hasn’t eaten since July.  My sister tries >to make her take her meds, but she throws it up alot of the time (both the >probiotics and the antibiotics). >We don’t know what to do.  My sister just put her on methotrexate and she’ll >be starting Remicade again on Friday.  It didn’t work before – immune >suppression actually seems to make her sicker, though her doctors refuse to >see cause and effect.  Since she started methotrexate, she’s gone from >having BMs 5 times a day to literally every hour, all day and all night. >I was hoping maybe there’s a reason Biaxin is better so we could convince >them to try it, before they make her even sicker than they already have with >their medicine.

Drop PANTS before emailing. An education teaches you that you don’t know everything. Intelligence means you know where to find the information you are lacking. mgbio

Response:

I am not aware of why Biaxin is used rather than Zithromax other than maybe a lower side effect occurance. My concern is you said she is not having much success. How long has she been on the treatment and is she taking a probiotic? If she is not taking a probiotic she can have CD like symptoms because the antibiotics will "wipe out" the gut of all the good bacteria along with the bad. Mike >My 10-year-old niece, dx of Crohn’s, is being treated for MAP and not having >much success. >She’s on a bit different antibiotic combination than what seems to be the >standard of Rifabutin and Biaxin.  Instead, her doctor has her taking >Rifabutin, Zithromax and Ethambutol. >Is there a reason why Biaxin normally seems to be used instead of Zithromax? >Is there a reason why Biaxin might be more effective against MAP, or should >it not matter which macrolide?  Her doctor said Zithromax is stronger and >better… but if that is the case, I am wondering why Biaxin seems to be the >drug of choice. >Thanks for any help.

Drop PANTS before emailing. An education teaches you that you don’t know everything. Intelligence means you know where to find the information you are lacking. mgbio

Response:

My 10-year-old niece, dx of Crohn’s, is being treated for MAP and not having much success. She’s on a bit different antibiotic combination than what seems to be the standard of Rifabutin and Biaxin.  Instead, her doctor has her taking Rifabutin, Zithromax and Ethambutol. Is there a reason why Biaxin normally seems to be used instead of Zithromax? Is there a reason why Biaxin might be more effective against MAP, or should it not matter which macrolide?  Her doctor said Zithromax is stronger and better… but if that is the case, I am wondering why Biaxin seems to be the drug of choice. Thanks for any help. — Lose the attitude before emailing.  ;)

Response:

Question:

Been using this for awhile now and I feel a lot better.  I haven’t seen it mentioned here yet, but I will say that it has helped a lot and I haven’t suffered any side effects.  Here is a link to their site if you want it: http://www.probiohealth.com/ph-crohns.html William

Response:

I haven’t yet but I am thinking about it.  I suffer all year around with crohn’s and I have tried all the prescription treatment, but some times they are worse than the disease.

Response:

Question:

I, too, suffer from fistulizing CD, so I can sympathize with you.  Remicade always did the trick to close the fistulas, but this only lasted 8-12 weeks, the length of time the Remicade remained in my body.  Cipro and most especially flagyl were effective antibiotics in closing the fistulas too, but more slowly than Remicade, and they always eventually re-opened, even when continuously on the antibiotics.  At one point my doctors and I tried Rifabution and Biaxen (also not cheap) but I could not tolerate the nausea the drugs induced and the treatment was abandoned.  What has been effective and a real life saver for me has been 6MP.  Since finding the right dosage of 75 mg (and this took 2 years of using the medication) I have been in remission and fistula free for what will soon be 3 years.  In a colonoscopy this past May my GI said that not only is there absolutely no visible sign of active CD, but additionally there are no signs of scar tissue near the anostomosis site.  It has given me back my quality of life. Good luck, HTH.  mgbio – Hide quoted text — Show quoted text – > I have fistulizing crohns with 3 rectal fistulas. They are always infected > and draining. This has been the case for about 2 years, every day. They are > constantly dumping and dumping pus. My doctors are absolutely no help. They > just keep cutting them open and it never helps. It seems to make them > worse. They tell me to take remicade but I can’t afford that. And no, I > don’t want a seton. > I don’t care if the fistulas stay, I just want to get rid of the pus. What > antibiotics could clear this up? I don’t care if I have to take them every > day for the rest of my life, I just want the draining to stop. I don’t know > if I can afford cypro/flagyl. I can afford augmentin and such. > BTW, my girlfriend is going thru a bad hurricane. She’s in the eye of the > storm right now, in Orlando, and she’s scared to death. Please pray for her > if you believe in God. Thank you.

Response:

>Please pray for her >if you believe in God. Thank you.

The prayers are on the way, both for your girlfriend AND for the suffering you are going through.  May God bless you both. Love,   Margie CD Class of 67 UC Class of 96

Response:

I have fistulizing crohns with 3 rectal fistulas. They are always infected and draining. This has been the case for about 2 years, every day. They are constantly dumping and dumping pus. My doctors are absolutely no help. They just keep cutting them open and it never helps. It seems to make them worse. They tell me to take remicade but I can’t afford that. And no, I don’t want a seton. I don’t care if the fistulas stay, I just want to get rid of the pus. What antibiotics could clear this up? I don’t care if I have to take them every day for the rest of my life, I just want the draining to stop. I don’t know if I can afford cypro/flagyl. I can afford augmentin and such. BTW, my girlfriend is going thru a bad hurricane. She’s in the eye of the storm right now, in Orlando, and she’s scared to death. Please pray for her if you believe in God. Thank you.

Response:

Question:

My GI said the opposite to me.  He felt that Methotrexate had less side effects than 6MP or Immuran and was more easily managed and therefore should be tried first.  He felt 6MP and Immuran were used first more often due to GI’s having a greater familiarity with them and therefore less willing to use Meth with which they had less experience using.  mgbio – Hide quoted text — Show quoted text – > Hi Jeff, > I am on methotrexate, it is an immunosuppressant like Imuran or 6mp, not > like a steroid at all. It does take weeks – months to take effect. I > have UC, and only changed to methotrexate after Imuran was ineffective > for me. The methotrexate seems to be helping, but I recommend trying 6mp > or Imuran first. > Take care, > Amy. > hello, it seems to me that i remember reading that methotrexate is an > alternative to prednisone, perhaps with less adverse side effects.  is > this the case?  is it as effective?  is it used for UC or just > Crohn’s. i have UC and am getting great relief from IV cortiscoroids.   > this is my 6th day of a scheduled 10 day treatment, and after flaring > for five long months, i feel like i am about 90% right now.  i just > hope i can taper off the steroids and not re-flare.  i have been on > oral prednisone for about 3 months.  anyway, this post is a bit > scattered.  probably due in part to the steriods, but i would > appreciate any and all information on methotrexate.  sure would be > nice to not be on prednisone.  can i switch to methotrexate > immediately without tapering the prednisone and taper with > methotrexate?  do i seem to have any idea what i’m talking about?   > thanks again… > jeff

Response:

i use mtx for cd.  i have not heard of any with uc taking it.  it is an alternate, an immunomodulator to pred for cd anyway.  no, you can’t wean pred by using mtx.  they work differently.  your body shuts off making it’s own natural steriod when you take pred, this is not the case with mtx.  side effects are different, not as disabilitating as pred, but mtx has it’s own issues as well. mtx is chemo in low dose.   not the friendliest to the body, especially your liver. jeff

– Hide quoted text — Show quoted text -> hello, it seems to me that i remember reading that methotrexate is an > alternative to prednisone, perhaps with less adverse side effects.  is > this the case?  is it as effective?  is it used for UC or just Crohn’s. >  i have UC and am getting great relief from IV cortiscoroids.  this is > my 6th day of a scheduled 10 day treatment, and after flaring for five > long months, i feel like i am about 90% right now.  i just hope i can > taper off the steroids and not re-flare.  i have been on oral > prednisone for about 3 months.  anyway, this post is a bit scattered. > probably due in part to the steriods, but i would appreciate any and > all information on methotrexate.  sure would be nice to not be on > prednisone.  can i switch to methotrexate immediately without tapering > the prednisone and taper with methotrexate?  do i seem to have any idea > what i’m talking about?  thanks again… > jeff

Response:

Hi Jeff, I am on methotrexate, it is an immunosuppressant like Imuran or 6mp, not like a steroid at all. It does take weeks – months to take effect. I have UC, and only changed to methotrexate after Imuran was ineffective for me. The methotrexate seems to be helping, but I recommend trying 6mp or Imuran first. Take care, Amy. – Hide quoted text — Show quoted text – > hello, it seems to me that i remember reading that methotrexate is an > alternative to prednisone, perhaps with less adverse side effects.  is > this the case?  is it as effective?  is it used for UC or just Crohn’s. > i have UC and am getting great relief from IV cortiscoroids.  this is my > 6th day of a scheduled 10 day treatment, and after flaring for five long > months, i feel like i am about 90% right now.  i just hope i can taper > off the steroids and not re-flare.  i have been on oral prednisone for > about 3 months.  anyway, this post is a bit scattered.  probably due in > part to the steriods, but i would appreciate any and all information on > methotrexate.  sure would be nice to not be on prednisone.  can i switch > to methotrexate immediately without tapering the prednisone and taper > with methotrexate?  do i seem to have any idea what i’m talking about? >  thanks again… > jeff

Response: