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Crohn's Disease Forum » Support Forum » Very sick. Healing without medication?


 
12-25-2011, 03:01 PM   #1
NaturalPresence
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Very sick. Healing without medication?

Good day beautiful friends. I am recently diagnosed with Crohns Colitis. I have many ulcers (15) on my colon. I have been sick, feverish, weak etc. for 3 months now. I have always been very healthy.

I have severe mouth ulcers, 2 severe fistulas that cause me unbearable pain and achy joints.

I was prescribed Prednisone but I am not going to take it. The side effects are hienous and I was not sick 4 months ago so i know this can be healed without medication.

For those who have done this, what did you use for reducing inflamation, pain and keeping psychological health?

I am currently in alot of fatigue but am keeping my heart available for healing.

Thank you for the input and care, I am grateful.
12-25-2011, 04:05 PM   #2
GutlessWonder86
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were you on pred before and that's why you aren't taking it? did you tell your GI that you are not taking it so he knows? Do you realize that once you are on it your GI can taper you off of it and put you on a maintenance dose of another medication to keep you in remission. Are you a candidate for Entocort by chance? No side effects at all. It's a steroid BUT it doesn't get into the blood stream like steroids to cause the moon face, mood swings, excessive weight gain, etc.

You need to be on something to get your CD back in remission. The reason for the pain is because you are flaring. Listen to your GI. That is why you went to him in the first place isn't it? To get some help because you are in pain, have fistulas, and have joint pain.

By not taking anything, you are doing yourself more harm than good. Even if you don't want to take steroids, see if there is another option. Heck, if you don't like your GI, you can get a 2nd opinion. You have that right. Good luck to you.
12-25-2011, 04:36 PM   #3
NaturalPresence
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Thank you for the reply GW, I am grateful.

No I have never been on medication for a disease, not ever. I am a 44 year old male with a healthy lifestyle, wonderful marriage and healthy business.

My GI is the best in Austin. He did a wonderful job of 'diagnosing' why I had fever, fatigue, colon ulcers, mouth ulcers etc. However he told me he does not know WHY I got them. He said he has no know idea of what caused the ulcers or inflamation. He said steroids would reduce the inflamation and make me feel better, but there were serious side effects. A lowered immunity is the least of them. I cannot see how avoiding steroids puts me 'worse off'?

My GI said there are no food restrictions and that I should expect to be on some type of medication for life. That is absolutely unthinkable in my world/beliefs. If there is no known cause, there is no way to treat it. How can any medication help other than supress symptoms? I want to heal permanently or as close to it as possible. There must be others who have been through this. My doctor prescribes what he knows and warns seriously against the side effects.

Obviously food must play a role as this all starts with the mouth and ends with the colon. Reducing internal inflamation must be possible through food/herbs/treatment other than toxic drugs. Crohns colitis is a symptom and syndrome in other cultures, not an unknown disease. I am not 'anti' medication but I am very fearful of steroids and the effects.

Just looking for input on natural anti-inflamatory foods/approaches to healing my current condition.

Much respect to you all! Thank you for the time~

NP
12-25-2011, 06:29 PM   #4
GutlessWonder86
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Did you know Crohn's affects the mouth (thus the mouth ulcers), esophagus, stomach, small intestines, large intestines, rectum, and anus. Crohn's patients are prone to fissures, fistulas (am speaking from experience), joint pain, fatigue, ulcerations on the colon are caused by CD, etc.

Check out the CCFA website. It will explain what Crohn's is, what areas of the body it affects (what I described above), the current treatments to get the patient in remission, surgery as a last option, how fistulas are treated, diet, exercise, etc. www. ccfa.org.

This link will assist in educating you more. good luck.

http://www.ccfa.org/info/about/crohns
12-25-2011, 06:56 PM   #5
NaturalPresence
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Blessings Gutless, thank you for the info.

Yes I am familiar with everything you mentioned as well as the site you listed. I myself suffer from fistulas, achy joints, fever and ulcers on my colon.
The site is typical of everything else sponsored by medicinal companies and is very segmented as a treatment approach. 100% drugs and 0% dietary. It certainly makes it hard to treat when only the digestive tract is looked at. The same site also mention 'no known foods' cause Crohns or colitis but that in an of itself makes no sense. A toxic colon is created by the foods we eat. As for the auto-immune function, that has to be activated by some means but it surely is not cured by any medication. I just want more answers and many more perspectives before succumbing to this type of treatment.

Thanks again~ I appreciate your time and wish you a speeding recovery.

If anybody else wants to contribute, I would be extremely grateful.

Much respect, NP
12-25-2011, 06:58 PM   #6
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Or you could always go my way and end up in emergency surgery with a perforated bowel!

What causes it...genetics, and who knows what else. It is a chronic disease that can only be put into remission at this point. There is no cure at the time, but what you can aim for is remission.

Listen to Gutless, read up and educate yourself on the disease. Dis-ease. Yes, I know where you are coming from, but honey, this one will kill you if you dont pay attention. Get yourself well first, take the entocourt or pred, get on a good diet...for Crohn's, not for normal folks, and THEN look at alternatives.
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12-25-2011, 08:20 PM   #7
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Thank you Terriernut. I appreciate the input. Perhaps this is not the support forum for me. I do wish a beautiful Christmas for you and your family and may you stay in remission permanently.

Much respect, NP
12-25-2011, 10:27 PM   #8
chrisnsteph1022
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Try eliminating gluten. A lot of us are sensitive to gluten. Also try to reduce stress as much as possible. Stress is a big trigger.
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12-25-2011, 11:02 PM   #9
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Hi NP and

I'm so sorry to hear of all that going through.

I think the main thing with this disease, and any other for that matter, is to keep an open mind. Crohn's disease can strike with widely varying degrees of severity and unfortunately for some medication is indeed the only option. My own children were hit hard and fast, I wish more than anything it was different but it isn't and surgery and medication have been our only successful option up to this point. Having said there are other people on the forum that are following a holistic route with varying degrees of success just as those that follow the traditional medication route experience.

I certainly agree that food/diet does make a difference, it can help maintain a sense of health and well being when in remission and also alleviate symptoms when flaring, just bear in mind that it is highly individual and what suits one is hell for another. My daughter is in remission and follows a Vegan diet. It suits her wonderfully well but I know full well that there are members on here that would not be able to tolerate it.

You may find reading up on Enteral Nutrition (EN) of benefit to you. It can be quite successful for some in gaining remission so have a look at the EN forum...

http://www.crohnsforum.com/forumdisplay.php?f=161

EN is used widely in Europe/Canada/Australia but not so much in the US.

Also have a good look around the Diet, Supplement and Exercise forum, it is a good read and has loads of info on the sort of things you are looking for...

http://www.crohnsforum.com/forumdisplay.php?f=17

As I said, other members here are following a holistic route and one that immediately springs to mind is Shannon. Have a read of her thread...

http://www.crohnsforum.com/showthread.php?t=15655

Have a good look around the Forum NP and you will find other kindred spirits hanging out here. We are are a varied lot from all four corners of the world and you are most welcome here. Good luck and welcome aboard!

Dusty. xxx
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Last edited by DustyKat; 12-26-2011 at 12:02 AM.
12-25-2011, 11:10 PM   #10
LittleChloe
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I really understand your desire for a natural approach. We have chosen this for our daughter and she is currently doing well. However when first diagnosed she had some very serious issues that needed immediate medical intervention to save her life. We did subscribe to traditional medicine and she went on prednisone for 7 weeks to get things under control. We then consulted a naturopathic physician who put us on the alternative medicine path. I can tell you more about what we do specifically if youre interested but I would encourage you to get your disease under control first. Chloe very nearly had a perforated ileum and it came on very fast. We didn't even know anything was wrong at all until two days before her diagnosis. Having an extended hospital stay with loads of drugs was very hard because I've always treated my family and myself with natural remedies. This time was different though. I wish you well and hope you will consider what others have said on here.
12-25-2011, 11:22 PM   #11
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Hi NaturalPresence,
Some good links from Dusty for you...
There are individuals who have managed to treat themselves solely on alternative treatments. Sadly this appears more of a rarity, and not for want of trying.
Various diets like Paleo or S.C.D, elimination diets, turmeric, high doses of vitamins and minerals, frequency machines that are supposed to target certain bacteria, worm therapy, L.D.N, probiotics, supplements which relieve oxidative stress, blood purifiers, Yoga, meditation and many other alternatives have shown varying degrees of success. (They are more generally used in combination with at least one conventional medication, at least for a time.)
It is an extremely individual illness with varying responses for each individual. I really wish you every success with your own journey and hope you are able to find a path that is acceptable to you, in all ways - it will require experimentation as the alternative path is less clear.
good luck.
12-26-2011, 12:22 AM   #12
rygon
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Remember what Drugs really are, just chemicals derived from nature that have been tested and found to work.
If an alternative medicine is trialed and is successful, its packaged with a company name and sold as..medicine

penicillin is derived from mould (also they didnt understand how the illnesses it combated worked, nor the drug, yet it did).

Asprin is derived from the willow tree leaves and bark.

The cancer drug Taxol originally came from the bark and needles of yew trees.

All drug companies do is mimic nature and isolate the chemicals that benefit us.

By saying all drugs are bad and natrual remedies are good is being very narrow minded. Im not saying drugs are the only way to treat Crohns, but it definately has a very important role

You say that you have a very happy and successful marrige and business. I would suggest you read other peoples stories and think to yourself if it would stay that way when your Crohns becomes as bad as theirs. Its a very serious disease and needs to be treat with respect because it can go from being a bit of pain, to life changing very quickly
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12-26-2011, 01:30 PM   #13
NaturalPresence
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Thank you everyone for the input and advice, I am grateful.

With respect, I understand the severity of this disease (my condition of it). I am currently in it, living it, suffering greatly from it. I am in severe pain most all day, each day and night from excruciating anal fistulas, mouth ulcers (as many as 10 at a time) and achy joints, bloody stools, not to mention the many ulcers lining my colon. I get little rest and have spent many hours crying in pain. I have no illusions about what I am facing. My case is a painful case.

It is because of the severity of this disease in my life (and how it came on suddenly) that I take the treatment option so seriously and am seeking EVERYTHING I can about healing this before subjecting myself to to the 'recommended' medication which has serious and potentially fatal side effects. I am simply asking questions, doing more and more research, learning as much as I can. In the meantime I am doing what I can to keep myself healthy and strong with proper nutrition a positive mental outlook and faith (to the best of my abilities though I have moments of depression and despair).

Even recommended 'food supplements' like Ensure or Boost (as an example) do not appear to be healthy products for me and I just cannot see how my body can benefit from that sugary substance without also suffering from the contents. The PRIMARY Ingredients: SUGAR and OIL. (Water, Corn Syrup, Maltodextrin Corn, Sodium And Calcium Caseinates, Sugar Sucrose, Canola Oil, Corn Oil, High-Oleic Safflower Oil, Soy Protein Isolate, Soy Lecithin, Natural And Artificial Flavors, Carrageenan, FD&C Red No. 3, FD&C Yellow No. 6, FD&C Blue No. 1.) and the vitamin content is far below even 25% of the basic RDA (which is the lowest amount needed). If you drank 4 of these a dy to get the MINIMUM RDA, you take in so much sugar that you are at increased risk for diabetes and pancreatic breakdown. That goes against everything we know about nutrition and rebuilding health. The options i have chose may be much more expensive but they make 'sense' to my heart and logic.

Rygon~ again with respect, my wife is my best friend. We are a family and we don't give up on each other when the going gets tough and especially if it gets VERY tough. We come together with support and love. We have been married for nearly 20 years and have gone through so much as a family. The whole family is involved in this healing process. All of us are researching, asking questions. All of us are wanting the best for me as that would be the best for the family and we will all come out of this stronger. I am not 'anti' anything as I said, I am simply asking. I will take medication if it comes down to it (I will do WHATEVER it takes to heal) but drugs do not have to be my first choice just because it is my doctors first choice. He does not know anything else and has no experience with anything else and plainly admitted it. He has no nutritional training and does not understand the body or inflamation beyond his scope of expertise. He is a brilliant GI but he is not a healer or health care practitioner. BTW Rygon, drugs are not simply 'isolates' of botanicals, that is very wide stroke of a statement. They are chemicals without any natural botanical compounds or properties. It has been shown that 'isolates' seldom work because the healing mechanisms of a botanical substance depend on multiple parts of the plant working together. Just as they discovered that beta carotene isolate is a useless supplement where as getting it from a whole food (such as carrot) is where the beneficial properites arise from.

Surely there are others who know more about WHY this happened to me and exactly WHAT it is (internal inflamation) and how to treat it. I just assumed others on this board had done much more research in this area. I don't know know why but I just expected this to be that type of resource.

Dusty, thank you for the information and links. I am grateful for your time.

To everyone else, thank you, bless you. I honor your courage, I am sorry for any pain you may be in, I sincerely understand. I hope whatever treatment option you use works perfectly for you and that you prosper. Much Respect and God Bless,

NP
12-26-2011, 02:08 PM   #14
Terriernut
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http://www.crohnsforum.com/showthread.php?t=22520
May I suggest you read this?

You are expecting us to know 'why' this is happening. If it was a simple answer I expect there wouldve been a cure by now! It is a complex disease, and there is no one why it is happening. Your expectation of your GI and this group to know this is unfair. I believe the reason for this is you have been thrown a big curve ball in your life. Please, I do get you are in pain, and you want answers, but there are no simple answers out there.

You've been givin some very good advice and good links by the way. One size doesnt fit all though, with diet, with supplements, or anything else with this disease.

I have to ask....if you had been diagnosed with something else, like heart failure, or muscular distrophy, or something else, what would your response have been? I ask this not to insult you, but for you to think about it. I sense that because this is a disease with no known cause or cure, it might be making it worse for you. I am sorry, I wish you well.
12-26-2011, 02:13 PM   #15
stratford
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Hi NP

I hope you find success with your chosen route.
I wish i had found success with the natural route before i had a resection.(Which leaves me with life long problems).
Over the years i suffered i took Steroids,Immune system suppressing Chemotherapy,5-ASA drugs etc.None of these drugs gave me long term remission.

Just over a year ago i started looking for different help after the side affects of the Chemo put me back in hospital.
I read everything i could find about various different natural products which claimed to help Crohn's patients.I also started reading every Crohn's/Colitis forum on the web to read other peoples opinions.One thing i found with forums was the negative response towards anyone who posted success with natural products.
Accusations of posters being 'Spammers' 'Salesman' etc were the usual response.

I decided to try for myself some of the natural products.
I'm pleased to say i'm doing really well and i no longer take any Dr precribed drugs.

I wish you every success.
12-26-2011, 02:16 PM   #16
25times
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There are many reasons as to why we get this disease. Speculated reasons, of course, but it's the closest we're gonna get for the time being. There is obviously a genetic link. Especially between parents and children, and siblings. There is also a suspected cause from milk. Something about a certain bacteria or disease that is present in cows, and it is very close in symptoms to crohns. Maybe we get it from milk. Certain pathogens and infections could be linked to crohns. Like, you had an infection when you were younger (an intestinal infection) and it basically re-wired your immune system to attack normal cells, instead bad ones. Because crohns is an auto-immune disease. That's why we take immuno-suppressants. To suppress our immune system in hopes that if it can't attack anything, it won't attack the normal cells. Yes, you're more susceptible to infections, but the pain eases up and the inflammation goes away. Same with biologics. They block this thing called tnf (tumor necrosis factor??) and it prevents the inflammation. Alot of crohns sufferers have found great relief with remicade, humira, ect.. And it's nice because these drugs also treat arthritis, which alot of crohns sufferers can get. I have rhuematoid arthritis because of my crohns. I completely understand not wanting to take medication, due to the side effects. This hasn't been proven yet, but I now have multiple sclerosis and a golf ball sized benign tumor. MS has been linked to remicade. It doesn't cause it, but it can excacerbate symptoms. And this tumor has been present since birth, but they think the steroids made it grow. It's now causing me alot of pain and I'm having surgery in June to remove it. But that's the kind of stuff you have to deal with when you have a chronic illness. It could happen regardless of the medication or not. If you were to go the natural route, I wouldn't do it without the support of a doctor. You could potentially kill yourself. You should find a qualified doctor who is willing to help you go the natural route, and work with him to get your disease under control.
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Officially in remission from crohns.
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12-26-2011, 02:19 PM   #17
stratford
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One size doesnt fit all though, with diet, with supplements, or anything else with this disease.
Very true,whether it be drugs or the natural route.With Crohn's you may have to try many things before you find the one that helps you
12-26-2011, 02:21 PM   #18
StarGirrrrl
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Many members have done research, just look at all the things that have been mentioned. IBD is an agressive, incurable disease and much of it's nature is unknown to modern science. Modern science is not the be all and end all, this is only 2011 and I think it has another 100 years at least before more is understood about these diseases.

The food supplemments are designed to be a supplement, not a long term fix. You have to weigh up the pros and cons and sometimes this means choosing the lesser evil- the bad nature of Ensure/Boost as you see it or the implications of getting no food and no nutrients. Also to minimise the risks you feel they entail, you could increase your exercise and make sure the other food you eat is very low in fat and sugar.

I am undiagnosed but for awhile I had to choose being able to keep food in as the important thing, over the unhealthy nature of the food I was eating. At the time the former was more important to me.

You are correct when you say your GI is not a nutritionist- so ask to see a dietician or a nutritionist. Many IBD patients see a variety of specialists according to their needs.
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2009 joint pain/worsening tummy issues.
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Last edited by StarGirrrrl; 12-26-2011 at 02:37 PM.
12-26-2011, 02:23 PM   #19
stratford
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There are many reasons as to why we get this disease. Speculated reasons, of course, but it's the closest we're gonna get for the time being. There is obviously a genetic link. Especially between parents and children, and siblings. There is also a suspected cause from milk. Something about a certain bacteria or disease that is present in cows, and it is very close in symptoms to crohns. Maybe we get it from milk. Certain pathogens and infections could be linked to crohns. Like, you had an infection when you were younger (an intestinal infection) and it basically re-wired your immune system to attack normal cells, instead bad ones. Because crohns is an auto-immune disease. That's why we take immuno-suppressants. To suppress our immune system in hopes that if it can't attack anything, it won't attack the normal cells. Yes, you're more susceptible to infections, but the pain eases up and the inflammation goes away. Same with biologics. They block this thing called tnf (tumor necrosis factor??) and it prevents the inflammation. Alot of crohns sufferers have found great relief with remicade, humira, ect.. And it's nice because these drugs also treat arthritis, which alot of crohns sufferers can get. I have rhuematoid arthritis because of my crohns. I completely understand not wanting to take medication, due to the side effects. This hasn't been proven yet, but I now have multiple sclerosis and a golf ball sized benign tumor. MS has been linked to remicade. It doesn't cause it, but it can excacerbate symptoms. And this tumor has been present since birth, but they think the steroids made it grow. It's now causing me alot of pain and I'm having surgery in June to remove it. But that's the kind of stuff you have to deal with when you have a chronic illness. It could happen regardless of the medication or not. If you were to go the natural route, I wouldn't do it without the support of a doctor. You could potentially kill yourself. You should find a qualified doctor who is willing to help you go the natural route, and work with him to get your disease under control.
It has never been 100% proved Crohn's is auto-immune.
Many Dr's think it is whilst some argue it maybe a genetic illness.

Or could it be it is both which give people the same illness?
12-26-2011, 04:30 PM   #20
NaturalPresence
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Hey beautiful friends, thank you all for the replies, you are appreciated!

(Thank you Stratford! I appreciate your positive encouragement)

I will finish up my post with this and will not return to this post:
We can debate our opinions (and that is all they are, unvalidated opinions) about why Crohns exists, if it is an 'incurable' disease or not despite the fact science and medicine does not know what causes it.

We can debate on the 'pros and cons' of taking medicine, the potentially fatal side effects and the known hienous side effects (such as 25times articulated in her story) that we need to 'weigh' the benefits against etc. The bottom line is that ALL of us, EACH of us operate and take action from our own set of values, our own hierarchy of values and this is without exception. My own values have a long history steeped in understanding my body and why it is reacting why it is if I can. I personally find this wise, awake and very open minded. I have learned over the years that the majority of doctors I have ever seen are wholy unqualified and without sufficient education beyond thier chosen field to properly tell me why I am ill. This Crohns case is no exception and in fact is so plagued with 1/2 truths, 1/2 healings, partial remissions, poor dietary recommendations, drug effects and constant recurrance etc. that it makes me that much more interested to find a healthy way to recover. My doctor does not know, your doctor does not know however that does not mean others may not know.

To ever 'doubt' a natural approach to health is insanity to me. My body did not get sick because it was lacking in any drug and although the drug may 'prevent' my body from attacking itself, it may not be attacking itself. We do not know what is happening. Again I am not 'anti' medication, I am however pro 'permanent' healing if possible.

Crohns MAY or MAY NOT be an auto-immune disease. It is only speculated. So we truly do not know what we are treating unless we continue to ask and research. Again, in other countries the inflamation is a syndrome and since they have not 'labeled' it Crohns, they simply treat the inflamation and patients heal. That is not 'foolish' to me. It fits in my values and logic very much.

As for 'genes' or genetics. That is also only a 'probabilty' which could be said of nearly every disease known to man and is a big blanket answer to the question 'why did I get this'? It is used because we do not know why. Besides nobody in my family ever suffered form this.

TerrierNut, blessings to you! We all operate from our own understanding and beleifs. I do not feel Crohns is 'incurable' so I do not have that type of pyschological barrier. Perhaps you do? Perhaps that is the cause of your own apprehension? At worst I believe it can be permanently put in remission. This happens with cancer everyday as long as Chemotherapy is not used. I do not feel hopeless, I feel hopeful. I do feel serious frustration at my lack of ability to contribute to my family right now which can get depressing. Also it is not easy with the massive pain I am in. I seriously HURT. But my depression is always temporary and my family's love is awesome. Trust me, I would love a simple 'wonder' drug to take away my pains.

As for the other diseases you mentioned, I was not diagnosed with those so they too are not in my mind. Heart failure would mean death, LOL! Heart disease on the other hand is VERY curable / reversible, within weeks these days. No bypass, no stints, just dietary change. This is basic public awareness (have you seen this? http://www.amazon.com/Forks-Over-Kni...4933134&sr=8-1 )

It is a new DVD, but old information.

We are all different. I do not eat meat or dairy, fast food, processed food, processed sugars, wheat, dairy or non organic fruits and veggies if I can help it. Still I had a serious 'flare up' because of something I ate or didn't eat, did or didn't do and I want to find out why and how to calm it down. It may be a slow process, but what other choice have I? Prior to 3 months ago I was in excellent shape, physically, emotionally, spiritually and I plan on returning there and I feel it in my heart that I am on my way. I support you in your choice to use drugs, perhaps you can support me in my choice of a non-drug approach? We all need as much support as possible Terriernut. This is not a competition about who is right or wrong and nobody on this forum has the answers. We are all learning together. Perhaps what I learn can help others.

Much respect to you all and many blessings! God Bless!

NP
12-26-2011, 04:41 PM   #21
Terriernut
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Ok, clearly you have a problem with whatever I say, so....

Get on with your life and good luck to you. I am far from advocating drugs. I am far from advocating anything. Since you are ignoring everyone elses advice and going after me, so be it. And quit being passive agressive!

Toodles

Last edited by Terriernut; 12-26-2011 at 05:50 PM.
12-26-2011, 05:24 PM   #22
Crohn's 35
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It has never been 100% proved Crohn's is auto-immune.Many Dr's think it is whilst some argue it maybe a genetic illness.

Or could it be it is both which give people the same illness?


I agree that Crohn's has been not proven to be autoimmune but doesn't mean it isnt either. My whole family has IBD in some form and I have done all the diets, holistic route, accupunture, massage therapy... all kinds of stuff in the last 20 years. I am a complexed case as well. NO one knows what causes it because if we did we would have a cure.

Since everyone is different and locations and surgeries, there are no guarantees. Yes some foods make it worse but you learn trial and error. Most people think low Vitamin D can be a triggers as well.

I hope since you dont want to be on any meds that you dont have a blockage or perforation and that perontinitis can set in your bloodstream. Everyone has a choice to do their own research. NONE is better than the other. Hope you take heed of others on the forum. We are a strong community in helping one another, not being right or wrong.
12-26-2011, 06:04 PM   #23
lynx
Senior Member
 
Join Date: Oct 2010
Hey just something i found that works for mouth ulcers is DESERT ESSENCE mouth wash if you want a truly natural way to go. Nothing else seemed to ease the pain or help get rid of them. I had used tea tree oil products in the past and actually have used this mouthwash before but then switched to a more conventional mouthwash that used alcohol as a primary ingredient. This stuff is great but not that great for taste lol. Just a suggestion. http://www.desertessence.com/dental-...-oil-mouthwash
__________________
Symptomatic since at least '99
Original Dxd '06 with UC
Dxd '10 with CD

Currently taking:
Delzicol ( the latest bs non generic form of mesalamine because I live in the U.S.)

previously taking:
a bunch of stuff.

"Research is what I'm doing when I don't know what I'm doing."
Wernher Von Braun
12-26-2011, 06:22 PM   #24
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi NaturalPresence and welcome I lived in Austin until not too long ago. Just off the green belt near the 71/1 interchange.

Contrary to what you said, I DO think this is the support forum for you and hope you do decide to stick around.

I'm pro holistic treatment under certain circumstances but must admit, that you have fistulizing Crohn's Disease is very concerning to me. But hey, if you're adamant that the holistic route is the only way you want to proceed, then I support you in that as it's not my place to judge, only support Some of the folks above may have frustrated you a little and vice versa, but I swear to you it's only because they care. A lot. They are AMAZING people and feel your pain and are offering advice from their heart.

With all that said, let's begin then, shall we?

The links that Dustykat provided are a good start. Enteral/elemental nutrition can lead to remission if followed properly. I understand your concern about the ingredients, but there are more kinds out there than just Boost and Ensure. And if you can't find one you like, develop your own smoothie If it works, market the product and become a millionaire

Let's talk vitamin and mineral deficiencies. That you have mouth ulcers tells me you're likely deficient in folate so a good B complex vitamin would likely do wonders for you. However, you need to get your vitamin B12 levels checked first as people with Crohn's are often deficient in it and if we don't supplement B12, the folate can mask the symptoms of B12 deficiency until it's too late. That you're vegetarian or vegan increases the likelihood you're B12 deficient.

I would also strongly suggest getting your vitamin D levels checked. If you're deficient in B12 (many Crohnies are) then proper supplementation can make a world of difference.

I'll stop here to see if you want to interact more of not. If so, I'm happy to elaborate much more and have plenty of ideas and thoughts. I'm also open to creating a holistic treatment subforum since there are other people here who feel the same as you. But if you don't want to take part in this forum anymore that's too bad, but I wish you well.

*hugs*
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It's good to be back
12-27-2011, 08:38 AM   #25
LOSTnut
Poopy
 
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Join Date: Mar 2010
Seems to me that "The Maker's Diet" is what you are looking for. Read and follow it, it might just be the road you need to travel
__________________
Heike

Diagnosed: April 2005

Back on Asacol

Dec 2010: colostomy/resection - failed
Jan 2011: Ileostomy
Resection planned for: sometime
12-27-2011, 09:33 AM   #26
Kit
Senior Member
 
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Ok, I didn't read through every post, but if you are bent on going it natural you might want to read this book. Now, if there is anything I know about Crohn's is everyone is different in what helps them go into remission. But here is the Book: Jordan Rubin " Patient Heal Thyself" It is radical, but it seemed to work for him. Probiotics are my next suggestion. Research it.
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01-12-2012, 05:06 PM   #27
NewbieMom
 
Join Date: Dec 2011
Location: Newton, Massachusetts
NaturalPresence: Just read “Inflammatory Bowel Disease by a UK practitioner, Professor John Hunter (recommended in the Diet Forum, btw). There is a great deal of focus on dietary approaches, including his view that most people can be brought into remission with 2 weeks of exclusive enteral nutrition, using elemental products (i.e., not the Boost/ Ensure type products). There is much information (although the research isn’t cited) on dietary issues, so it might be a good read. The book discusses Exclusion Diets in great detail. Bought it on Amazon.

Also, might explore Jini Patel Thompson’s website: www.listen2yourgut.com She sells her own formula for enteral nutrition (quite expensive) that she believes is more natural based on her own research (she started out on this path to solve her own issues - I don't know that she has medical background). At any rate, lots of info on her site, regardless of whether you buy anything (she sells a lot of things, as a warning...).

Given your focus, seems like you should complement the medical experience of your GI doctor with a Naturopath . There are Naturopaths who are experienced with Crohn's. I have been told to look for someone who has gone to one of the accredited institutions (I believe Bastyr in Seattle is well-regarded). The "Eat for Your Blood Type" doctor (Peter D'Adamo) who is a Naturopath and mentions Crohn's in his book - he has a subsequent book the "Genotype Diet."
01-14-2012, 07:51 AM   #28
dietsavedme
New Member
 
Join Date: Jan 2012
Blessings Gutless, thank you for the info.

Yes I am familiar with everything you mentioned as well as the site you listed. I myself suffer from fistulas, achy joints, fever and ulcers on my colon.
The site is typical of everything else sponsored by medicinal companies and is very segmented as a treatment approach. 100% drugs and 0% dietary. It certainly makes it hard to treat when only the digestive tract is looked at. The same site also mention 'no known foods' cause Crohns or colitis but that in an of itself makes no sense. A toxic colon is created by the foods we eat. As for the auto-immune function, that has to be activated by some means but it surely is not cured by any medication. I just want more answers and many more perspectives before succumbing to this type of treatment.

Thanks again~ I appreciate your time and wish you a speeding recovery.

If anybody else wants to contribute, I would be extremely grateful.

Much respect, NP
It is entirely possible to heal yourself with diet. Just like your Dr. who doesn't fully understand diet, so to it seems the vast majority of people who responded to your post, know nothing about treating their disease other than what the Dr. has told them.

Stick with it, it is possible to heal yourself with diet.

The big hitters:

No sugar - cut sugar out of your diet completely, you are bang on with your observations on the meal replacement drinks, they're mostly sugar and dairy product typically. Sugar is bad, in just about everything as you noted with your drink observation, and no need for it at all in this day and age, other than to satisfy taste buds and cravings.

Anti inflammatory foods - every food has the potential to either contribute to, or relieve inflammation. Check out this, and look up the foods you want to eat, and check their inflammation index, this site has just about every food variety known to man indexed: http://nutritiondata.self.com/help/inflammation

Juicing of vegetables - take in an excess of nutrients. Your body needs to heal, so the amount of nutrients that your body needs to fend off disease, repair tissue, and help you heal and rebuild needs to be more than normal. You are not maintaining health, you are trying to restore it, so your body is working harder. Start a juicing regiment, you will feel better.

No caffiene, no cigarettes - cut those out if you do. You're unnecessarily taxing your body and hindering your healing if you are taking either of these.

Exercise - get your body circulating properly. Get your body repairing itself. Start exercising if you aren't. Walking is just as good as running, so no need to over do it.

Be wary of herbal supplements - small doses of a magic herb are what many think of when they think natural healing. You won't find a magic herb. Use a whole body approach. Be healthy, truly healthy, no pills in the medical healing world fix you, no pills in the natural healing world will fix you either - they're shysters in each realm selling you a solution in a pill.

No dairy - cut out dairy, especially milk. It causes mucous and can trigger allergic reactions in your body you might not even be aware of.

Avoid the one step cure - avoid the "just cut out this one thing" or "just add this one thing". The power of some parmaceitucals due to the nature of the chemicals in them do have an effect on your body. But with true natural healing, you need to fix the equilibrium of your body, it's not a one pill cure, or a cut out one thing solution, it's a whole body solution you need to embark on, embracing all aspects of your health. More work than popping a pill or not eating one thing, definitely. Worth it when you can look back at your life and see what you accomplished with your body, most definitely, trust me on that one ;-)

Hydration - make sure you are adequately hydrated. Inflammation, especially chronic prolonged inflammation, can do a number on you and you may require excess water. Many guides out there about how much we should be drinking. Don't overdo it in one sitting, but through the day you should be getting at least 2 Litres of water.

RE: the fatigue you are feeling - might want to have your iron, b12, and a blood cell count done to see what state your body is in. Iron and b12 are common deficiencies and can lead to tiredness. They're also easily correctable.

RE: dry mouth and mouth ulcers - try a toothpaste made for dry mouth. There are some out there, depending where you live might be different brands available. Most toothpastes contain something called SLS, which makes them foam, which dries things out. If you have inflammation, drying out your mouth with SLS twice a day can trigger mouth sores. Look for dry mouth toothpastes, likely has no SLS and won't foam when you use it.
01-14-2012, 08:17 AM   #29
dietsavedme
New Member
 
Join Date: Jan 2012

Surely there are others who know more about WHY this happened to me and exactly WHAT it is (internal inflamation) and how to treat it. I just assumed others on this board had done much more research in this area. I don't know know why but I just expected this to be that type of resource.


NP
They all get banned and called quacks, this is a pill popping consortium on here unfortunately.
01-14-2012, 08:49 AM   #30
ekay03
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Join Date: Feb 2011
Location: Balch Springs, Texas
As you can see, I do "Pop" a lot of pills. I was diagnosed 20 odd years ago. When I was first diagnosed I went to homeopathic doctor and tried to treat that way to no avail. At that time I also started seeing a psychologist. I was going at this disease from both ends! It wasn't until I had a bowel resection that I turned back to conventional health care. Not only do I feel better when I take my meds. My meds allow me the freedom to LIVE. It take me no time to take the pills and follow doctors orders. Personally I no longer care to spend my time searching for answers to why I got sick while I suffer in pain. I would much rather swallow the pills and get on with my life and that is my two cents!
__________________
Crohns dx 1992
Bowel resection in 2000 and remission since then.
150mg Azathioprine maintenance dose
Nexium
Buspar
Zoloft
amlodipine
clonidine
Ferrous Sulfate
Folic acid
multivitamin
Bentyl as needed
Lyrica x2 daily for pain
Norco as needed for pain
Ondansetron as needed for nausea
Miacalcin for the bones
That's a lot of stuff, but I feel good

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