Question:

I would appreciate any info on feasibility or successful steroid reduction with regard to Crohn’s Disease.  My husband was diagnosed 3 years ago with Crohn’s – lesions being in the illeum.  He has had 288 inches of intestine removed because of perforation.  To date he takes Cat’s Claw for his immune system, Yucca/Devils claw for joint pain, and additional Men’s Formula,( which has pygeum, saw palmento, stinging nettle, gotu kola, & zinc) for overall general health.  Since the surgery in 94 – he has not been able to reduce beyond 10 mg. of steroids.  He also has chronic diarehha since the surgery.  Our Dr. is very open minded and supportive of our alternative treatments – he has stated" no alfalfa", however. We have received much good info from the herb newsgroup & thought we’d put a feeler out here.  I understand this is a difficult subject – it is difficult for us to live with also.

Then there is the Gottschall diet. Elaine Gottschall has written a book entitled Breaking the Vicious Cycle, Intestinal Health through Diet. She says it is a diet for Crohn’s disease, ulcerative colitis, diverticulitis, celiac disease, cystic fibrosis, and chronic diarrhea. It is published by the Kirkton Press in Kirkton, Ontario, Canada, 1994, ISBN 0-9692768-1-8. The telephone number is 519-229-6795. The fax is 519-229-6969. Also: Kirkton Press, 942 Military St., Suite A, Port Huron, MI 48060; 800/332-3663. It has been discussed in the alt.support.crohns-colitis newsgroup with some people reporting success and others not. The author says that one month is long enough to tell if the diet is helping, but it then takes longer to "cure". For sites on the book see: http://www.panix.com/~donwiss/index.shtml#gott There is a Gottschall diet mailing list. To subscribe, send an email to message body, put the two words SUBSCRIBE scd followed by your own email address. Then send it off. Your name will be added to the mailing list. To The basics of the diet are (snipped from crohns-colitis newsgroup posts): Basically, you only eat monosaccharides which means simple sugars, so that everything is digested with no leftovers, like fiber. These leftovers are believed to feed to bacterium and "flora" in your intestines which then can get out of control (the bad ones) and make further digestion even harder. Their overabundance causes them to produce extra mucus which covers up the microvilli which break down complex sugars. So more is undigested, they eat more, they grow more, a "vicious cycle." My GI said he thinks the theory has some validity, but no controlled studies have been done, so no proof, and not everyone who you would think would benefit does. Hence, the experimental side of it. What you can eat: fruit and vegetables, cooked only at first until you can tolerate more; nuts when you can tolerate them; some beans (lentils and white navy) when you can tolerate them; meat; milk products without lactose, like hard aged cheeses (cheddar, colby, swiss); homemade yogurt (real easy and good!), a few others; honey. No-Nos: refined sugars; wheat and other flours — NONE at all; most beans; potatoes; lactose milk products; chocolate (of course). The Specific Carbohydrate diet: – the main idea is to only have simple sugars in the body that can easily be broken down Allowed: – fruits, vegetables, honey, meats, most legumes and beans and nuts – some cheeses, special homemade yoghurt Not Allowed: – all grains: wheat, corn, rice, etc.. (ie no bread, pasta, etc of any type except when made by recipes in the book) – sugar (no more sweets!) – most dairy products, including milk – no processed cheeses or processed meats It seems like basically everything that is processed or already prepared is disallowed – I think everything you eat will either have to be natural or home-made. The basic rules of the Gottschall diet are to avoid all disaccharides and polysaccharides (most sugars and starches).  The theory (explained in the book) is that these long-chain molecules cannot be broken down in our guts into their smallest units – monosaccharides – which are absorbed into the blood.  If these are not broken down by our bodies, bacteria in the gut can eat them and grow out of control.  So, if we only each monosaccharides, we can absorb them without needing to break them down and the bacteria starve. Among the things to avoid are: bread, cereals, pasta, and anything else made with flour; rice, potatoes, anything with added sugar or starch (most canned/processed foods); most dairy products (lactose is a disaccharide).  Your diet is mostly fresh/frozen meat, fish, vegetables, and fruit.  You can also eat nuts, eggs, and some cheeses. The book includes recipes such as breads, cakes, and cookies made with nut flour. Overall, it is NOT an unhealthy diet.  However, it would be difficult for vegetarians because tofu and most soy-based products cannot be eaten, so protein can be harder to come by.  I’ve been on it for over a year and am symptom free as long as I don’t cheat.  It doesn’t work for everyone, but I cannot think of any reason not to give it a shot. If anyone has any questions, please feel free to email me.

Response:

I was recently diagnosed with crohns disease.  Am still unsure what the disease is really all about and truly whether or not it can be helped via diet and/or homepathic remedies.  Any ideas?

You might try checking out the nutrition guide at  http://members.aol.com/genekinder/nutrinf.htm  It mentions Crohns specifically Tom — Partner In Health = http://www.worldprofit.com/health/mblpls.htm     See FREE Nutritional Guide: ~~~ Support for 180 conditions          http://members.aol.com/genekinder/nutrinf.htm

Response:

I was recently diagnosed with crohns disease.  Am still unsure what the disease is really all about and truly whether or not it can be helped via diet and/or homepathic remedies.  Any ideas?

Response:

Go to the crohns-colitis newsgroup:  alt.support.crohns-colitis. Also, the Crohn’s Colitis foundation has a web page:  www.ccfa.org. You’ll find a tremendous amount of information in both places. I have Crohn’s, by the way, and if you have any specific questions, feel free to ask. Bye/Liz – Hide quoted text — Show quoted text – I was recently diagnosed with crohns disease.  Am still unsure what the disease is really all about and truly whether or not it can be helped via diet and/or homepathic remedies.  Any ideas?

Response:

(Garellk) writes:

: :I was recently diagnosed with crohns disease.  Am still unsure what the :disease is really all about and truly whether or not it can be helped via :diet and/or homepathic remedies.  Any ideas? Have seen many patients improve with dietary changes.  See if you can find an alternative physician in your area.  There are many ways to balance the body for food allergies, if you have them.  Have also had good luck using IV Vit C therapy.  Seems to help the whole body function better. There are many homeopathica that may help.  Indol and Nux Vomica are great for the GI tract.  Try finding a homeopathic MD!  You might be able to find a physician through the health food store in your area.  They usually aare well informed.

Response:

I would appreciate any info on feasibility or successful steroid reduction with regard to Crohn’s Disease.  My husband was diagnosed 3 years ago with Crohn’s – lesions being in the illeum.  He has had 288 inches of intestine removed because of perforation.  To date he takes Cat’s Claw for his immune system, Yucca/Devils claw for joint pain, and additional Men’s Formula,( which has pygeum, saw palmento, stinging nettle, gotu kola, & zinc) for overall general health.  Since the surgery in 94 – he has not been able to reduce beyond 10 mg. of steroids.  He also has chronic diarehha since the surgery.  Our Dr. is very open minded and supportive of our alternative treatments – he has stated" no alfalfa", however. We have received much good info from the herb newsgroup & thought we’d put a feeler out here.  I understand this is a difficult subject – it is difficult for us to live with also. Thanks in advance – email us or respond per newsgroup We’ll be checking in Coco

Response:

I would appreciate any info on feasibility or successful steroid reduction with regard to Crohn’s Disease.  My husband was diagnosed 3 years ago with Crohn’s – lesions being in the illeum.  He has had 288 inches of intestine removed because of perforation.  To date he takes Cat’s Claw for his immune system, Yucca/Devils claw for joint pain, and additional Men’s Formula,( which has pygeum, saw palmento, stinging nettle, gotu kola, & zinc) for overall general health.  Since the surgery in 94 – he has not been able to reduce beyond 10 mg. of steroids.  He also has chronic diarehha since the surgery.  Our Dr. is very open minded and supportive of our alternative treatments – he has stated" no alfalfa", however. We have received much good info from the herb newsgroup & thought we’d put a feeler out here.  I understand this is a difficult subject – it is difficult for us to live with also.

You could investigate the diet alternative. In these e-mails Heather tells how they went about finding out which foods were troubling her husband. Don. Don, Since this is not my computer and other than through my Dad’s computer I am not on internet I will send you this message and if you want to pass it on to the Crohn’s nonbelievers you may.  Even if it saves one person from having a bit of their gut removed it will be worth it!! There is an article in the Lancet. Volume V.II, 1985. Pages 177-180. Crohn’s Disease: Maintenance of Remission By Diet. Alun, Jones, … et al. Anyways the gist of it is that they all went on spring water and an elemental diet. (We had Greg on turkey soup broth and water.)  They then started adding foods in and if they bugged them they cut that food out of their diet.  Out of about 110 people, 50 decided medication and surgery was easier. Of the 60 who remained, 10 did not stay in remission and found that diet did not help, the good news is 50 who stuck to their diets have been 3 years in remission.  Greg is now 1 1/3 years in remission which was unimaginable before we did this to him.  The things that bother him are gluten, corn, yeast, tap water, coffee, additives, alcohol, chocolate.   Anyway the main food intolerances listed are wheat, dairy products, brassicas, maize, yeast, tomatoes, citrus fruits, eggs, tap water, coffee, banana, potato, lamb, pork, beef, rice, tea, fish, onions, chicken, barley, rye, turkey, additives, alcohol, chocolate, shellfish, swede. It worked for Greg and it has worked long enough that now our doctor is telling his other Crohn’s patients to give it a try.               Hope this helps,                                Heather …specifically diagnosed via colonoscopy with inflammation in the colon. Presents with symptoms of daily pain, gas, loose stools and occasional diarrhea, and now significant weight loss.

Don, As I’ve stated before in an earlier post to you. My husband was diagnosed with Crohn’s of the Colon with symptoms described above. Since going totally gluten free he has been symptom and medication free and even the brain fog and lack of energy which he never really realized he had (I sometimes now feel he has an overabundance of energy) are also gone. I have often wondered if he was a misdiagnosed celiac but his symptoms remained all through his teen years and we are not willing to try a gluten challenge just to test for celiac. In his words "I don’t care if it’s Crohn’s or Celiac, I am happy to be gluten free and healthy." As an aside he did have Crohn’s ulcers in his intestine – lots and very bad according to his last colonoscopy before the gf diet. He also fell to 97 lbs before diagnosed and put on medication. He now is about 160 lbs and definitely not overweight. Hope this helps, Heather Campbell Swift Current, Saskatchewan Don, The journal article that is a must for anyone with Crohn’s who wants to try diet is:   Jones,V.A, Dickinson,R.J.,Workman,E., et al. Crohn’s Disease: Maintenance   of Remission By Diet. The Lancet, July 27,1985. pg 177-180. It is a very good article. It describes exactly what we did with Greg only we did it at home: the home version is Turkey broth only until no symptoms (if I remember that was about 3 days) and then add one food in at a time and only keep it in if no symptoms. In Greg’s case symptoms are within 3 hours, I realize that this is not the case with some Crohn’s patients and for those, this may not work. The good thing about this article is it lists a whole bunch of foods that may be the problem. For example, while wheat and milk are quite common problems, if I remember correctly barley was only a problem in 1 out of 150 patients (don’t quote me on that just my memory) – barley is definitely a problem with Greg. All the foods he does have problems with were incidently in the list. Hope this helps and keep up the good work!                                   Heather Campbell                                   Swift Current, Sk. Canada

Response:

Question:

Read Jethro Kloss’ book Back to Eden. No sugar, no citrus, no whole wheat, no meat, no fried foods, no nuts, no fruit w/skins, no dairy. It works. Jethro suggests a lot of lifestyle changes and some herbs. It works. God bless.

Response:

The Crohn’s Colitis Foundation fo America, at http://www.ccfa.org/, is a great organization. You ahould be able to find an appropriate support group through them, and/or help with setting one up if there are none in your area. — Sarah

Response:

Hi Ken, I totally understand you. I’m a father with the same problem. For you I will be very clear: only surgery plus Elaine’s diet ( SCD diet ) solved her problem. She is now " medication, pain and incompetent doctors " free. Want more ? Please contact me Benito

Response:

Hello from Baltimore! I got UC when I was 5 years old… and back then – it was not fun – especially since the only diagnostic instruments were the METAL sigmoidascope and the ever popular barium x-rays.  I’m now 32, married, with 2 children.  I’ve had my ups and downs with the disease, but it can be lived with and when you find the right combination of great doctors, meds and diet, she’ll be fine.  Best wishes for yourselves and her…and you two are doing the right thing – learn all you can – it can only help you. Be well and happy holidays! Larry

Response:

My 5 year old daughter has just been diagnosed with Crohn’s diesease.   She is very active.  Her current symptoms are bloody stool and diarrea.   She has had these symptoms for about 2 months and underwent a coloscopy yesterday.  Our GI said the damage to her colon was in the moderate range. My wife and I are just trying to get as much info. as we can.  I’d appreciate anything from  parents of Crohn’s disease patients or people who were diagnosed with the disease at a young age.  I’ve visited the CCFA homepage and it seems very valuable.  I hope to find a lot of information from people in the same situation. Regards. Ken Temkin Chapel Hill

Response:

Question:

: Hi, my wife is interested on joining a support group based in New York. : She has Colitis and wants to share and talk about the various problems : she has had. : She is anxious to hear from someone. Write soon. Depending on where youlive in New York, I have heard that you get info from the Crohn’s/Colitis center at Columbia Presbyterian Hospital.  When I was in the hospital about to get a resection for my Crohn’s my mother called them, and supposedly they have a whole wing for this kind of thing.  They could probably direct you to a support group.  Or just write to the Crohn’s/Colitis foundation. They send you lots of info and have support groups all over the country.  Sorry i can’t provide you with addresses or phone numbers, but I’m sure if you ask your wife’s GI doctor he/she can direct you.  Or just call information.  Hope this is of some help. -Leighann

Response:

Dear Marshall,    Your wife should contact CCFA’s Greater New York Chapter for a list of support groups in your area.  The address is as follows: Greater New York Chapter 386 Park Avenue South 14th Floor New York, NY 10016 (212) 679-1570    If you have any questions, please don’t hesitate to ask. Debbie Moy Online Systems Assistant CCFA

Response:

I had recently wrote a few letters concerning my colitis,started taking prednisone,it seems like is getting better. My body seems like it going through alot of changes,coping with UC,etc.  Would like to get some type of support group for myself,I live in New York,Yonkers and maybe get together and become friends.

Response:

Hi, my wife is interested on joining a support group based in New York. She has Colitis and wants to share and talk about the various problems she has had. She is anxious to hear from someone. Write soon. writes: – Hide quoted text — Show quoted text -I had recently wrote a few letters concerning my colitis,started taking prednisone,it seems like is getting better. My body seems like it going through alot of changes,coping with UC,etc.  Would like to get some type of support group for myself,I live in New York,Yonkers and maybe get together and become friends.

Response:

Question:

The cheepest drug prices that I found were at Costco (one of the large wherehouse stores here in LA).  I don’t remember the exact price, but it was a lot cheeper for 6-mp.  Another place to try are the mail order pharmacy services.  Try AARP, it appears that you dont have to be a retired person, or meet an age limit, to use their pharmacy (at least that seems to be the case for ostomy supplies).  Also, try to work out a deal with your pharmacy.  Sometimes the best prices are at the independent pharmacy.  The chains don’t care and are just pill counting factories.  

To whom ever wrote the above: I resent the comment that the "chains don’t care and are just pill counting factories."  I would like for you to come and spend a day with me at a chain pharmacy. (I moonlight at a CVS)  They are the busiest and hardest places to work.  Try answering the phone, entering a prescription into the computer, counting it, checking your technician, answering another phone at the same time, then counselling patients about meds at the same time as trying to eat your cold pizza?  Sound fun, I don’t think so. Just because you may have had a bad experience somewhere, please don’t put down my profession.  As you can see from what I do here, maybe we pharmacists don’t just count pills. I hope that other pharmacists don’t read your comment because they just might not respond to your questions in the future. I Remain, a Very Disgrunteled Pharmacist! — Your Pharmacist, Anthony J. Longo, B.S., R.Ph.

Response:

My health insurance does not cover prescription drugs and I am currently paying $118.00 a month for 6-MP.  I’m  hoping to find a cheaper way to purchase this drug out of pocket. Has anyone found a cheaper price for this drug–perhaps a discount for a bulk purchase or a buying co-op. Does the Crohn’s?Colitis Foundation offer discournts? Any ideas would be appreciated, Jane

Response:

The cheepest drug prices that I found were at Costco (one of the large wherehouse stores here in LA).  I don’t remember the exact price, but it was a lot cheeper for 6-mp.  Another place to try are the mail order pharmacy services.  Try AARP, it appears that you dont have to be a retired person, or meet an age limit, to use their pharmacy (at least that seems to be the case for ostomy supplies).  Also, try to work out a deal with your pharmacy.  Sometimes the best prices are at the independent pharmacy.  The chains don’t care and are just pill counting factories.  

Response:

My health insurance does not cover prescription drugs and I am currently paying $118.00 a month for 6-MP.  I’m  hoping to find a cheaper way to purchase this drug out of pocket. Has anyone found a cheaper price for this drug–perhaps a discount for a bulk purchase or a buying co-op. Does the Crohn’s?Colitis Foundation offer discournts? Any ideas would be appreciated, Jane

Jane, Where do yo presently get your meds?  From CVS, Fays, etc, or a local drug store?  Chain stores should have a lower price, but not always.  AARP is another choice.  I would also try calling National Rx.  This is a mail away prescription group.  Also try Medco, another mail away.  These two are the largest Nationwide.  If you were taking Immuran, they just came out with a generic form, which is considerably less expensive than the brand. Best of luck in you search – the Mail away firms have 800 phone numbers. — Your Pharmacist, Anthony J. Longo, B.S., R.Ph.

Response: