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Can crohn's be treated without the use of medication?

Do you think that crohn's can be treated without the use of medication?


  • Total voters
    214
J

james

Guest
Regardless of your treatment, do you think that crohn's can be treated without the use of medication?
 
I think for treatment to be effective you will probably needs meds at some point. Though maybe you could not be on them forever...that I am undecided about.
 
I think if you have a serious flare you would probably die without medication or surgery. However when the disease is inactive, it MIGHT be possible to keep it away without medication. Although i wouldn't count on it.

I was healthy until i stopped taking azatioprine, and my CD came back hard. And i am someone who lives a very active and healthy life, and drinks alcohol very moderately and doesn't smoke. I have to say that no you cant do it without medicine, but then again there might be somebody with milder crohns who can and has done it.
 
i went for the 2nd option, but i would stress that i believe only mild Crohns can be treated/tolerated with options other than meds, such as a very carefully planned diet taking into account nutritional absorbtion, immune-building foods etc...

there wasn't any mention of surgery in the poll. i think basically if someone has really aggressive Crohns, causing all the horrid effects we know and read about, then they wouldn't have much of a life without medicinal or surgical intervention.
 

merrywidow

mum with a dogdy tum
nope. you need medication/surgery to have a half decent life.
whats the point of having pain when there is great meds to help you?
sharon xx
 
Personally speaking - I had a year of meds (prednisone etc), then a resection, followed by approx 10 years on Mesalazine and Immodium, and for the last 5 years I have taken no meds. Have had active lifestyle, careful diet and cod liver oil, but that's just luck - I'm certainly not going to try and persuade others to stop taking meds. This was under the guidance of the doctor at the hospital and it was very very gradual and controlled.

I think I'm lucky in that my Crohn's has gone from middling-severe to fairly mild (still have some pain and upsets but probably one day in 3 rather than constant every day).

I am an example of Crohn's with no meds and I do keep a close eye on it and have had a couple of dashes to hospital for suspected obstruction, but these turned out to be partial and subsided.

I now only go to see the hospital doctor if I need to - so that went from once a week (15 years ago), to monthly to six monthly to yearly.....and I haven't seen a specialist for about 3 years.
 

Jennifer

Adminstrator
Staff member
Location
SLO
It's an autoimmune disorder and no diet can change that. For some people its worse than others but that doesn't mean you should go without medication. I'm like Amay right now where I'm not seeing a specialist and I'm not on any medication. Do I recommend this? NO. I'm only doing it because I'm having a problem with my health insurance covering my medications and the GI I tried to see in this area was horrible and I never want to see them again. Once I move in a few months I'll find another GI and hopefully go back on medication. I've been in remission for over 10 years but its also after my surgery and its not uncommon for patients to go 10 years or more without a flare.
 
I tried when i was first diagnosed. Natural therepies. Hmmm I don't think that I got better but it helped for when I started med. I'm only on pentasa at the moment. Boosting your immunity is great though. I think vit and minerals along with medications helps to control it so you don't flare so easily. But I think both meds and natural therepies helps.
Good Luck
 
My preference is as few meds as possible - pick your poison as a Doctor once said to me

Downside a very restricted diet

I am currently down to Bactrin and Colestipol + herbs and spices and oils

Long may it continue

If i can keep the gut guessing may be I can keep it under control

I do have meds waiting in case it changes - and I hit it hard and fast and hopefully shorten my recovery time to remission

Helps having a great GI on my side - so to speak
 
My husband has taken few meds for years

My husband has been in remission for about 20 years. He got Crohns as a teenager and was on meds until his mid 20's. He used to take Prednisone and was down to 140 pounds when we married. But he has taken hardly anything for years. He does take immodium once in awhile and lactaid. (He is also lactose intolerant.) And he also takes Gaviscon occasionally for acid reflux. He is very particular about what he eats, not a lot of cheese or fatty or starchy foods. He does eat a lot of meats - mostly beef and pork and a little chicken, and he loves a green salad with lots of veggies in it. He rarely eats fruit. He also stays away from citrus if possible (but he loves tomatoes) and he doesn't drink coffee. He also doesn't drink beer, but he occasionally drinks hard liquor and cola. He is even picky about what water he drinks and always drinks either water from our home faucet or one store brand. The different mineral contents in water are very noticeable to him. He goes in to get looked at once every few years and always comes out pretty clean with little or no evidence of Crohns. He also doesn't let stress bother him and doesn't keep things bottled up inside. He does tend to have a temper once in awhile though.
 
Personally I believe you don't need meds all the time
just when you have a flare up

I needed them to get well when first diagnosed

then stopped taking them about 3 yrs ago


although Im having a flare up now, have been given pentasa-mesalazine to keep 'in case' as a consultant now has to re-issue me them
 
This is highly speculative, but I will throw it out there for those that want to consider the possibility. I have not proven it to a degree I where I am comfortable saying it is factual, but it is the hypothesis I am working on.

I do not know the original cause of the immune system dysfunction. It is likely a mix of factors including genetic disposition. The genetics make it more likely we will get the disease, but all with the genetic disposition will not get it.

I am thinking there is a pathogen, or more than one that is introduced into the body, one way or another that causes the immune dysfunction. It seems that a virus would be the most likely culprit, as the immune system is pretty good at getting rid of most pathogenic bacteria. Once the alleged virus is established, then other opportunistic bacteria that normally would be eliminated by the immune system , starts getting a foot hold in the body.

A few of the bacteria I suspect are responsible for symptoms are:

H-Pylori
Porphyromonas gingivalis
Some strains of E-Coli
MAP bacteria

There may be others as well. The opportunistic co-infections most likely vary between individuals, and bring different symptoms, and even completely different diseases. Autoimmune condition may result in any number of different diseases. We happen to have crohn's because of the group of similar opportunistic infections we acquired after the original cause of immune dysfunction.

Having dealt with Lyme disease, and the co-infections that often come with it, I have been able to piece together a similar cause and effect concerning autoimmune disease. People with Lyme often enough develop one auto immune disease or another, as a result of the borrelia burgdorferi bacteria which suppresses the immune function. This allows the body to pick up any number of other infections, causing the disease to progress in strange directions.

This is not our bacteria of original cause, or at least it is not involved with most of us, but could be in some cases. There is something else that has a similar effect that is yet unidentified.

All speculation, for those who like mental chewing gum.

Dan
 

Dallies

Dragonfly
And very interesting it is too!! I know after having a chat with our daughter's professor he mentioned 'bacteria'.

However in answer to the question, Can crohn's be treated without the use of medication?

I'd say no.
 
I think you have to use medication to either suppress the immune system to keep it from reacting and inflaming the body. In particular the intestinal tract. Or you have to boost the immune system to make its attack against the various pathogens more effective.

I feel the second method is preferable, if it will work for you. The reason being suppressing the immune system could lead to even more infection in the long haul, giving you periods of relief, but possibly more symptoms, and possibly other autoimmune diseases later.

There are many variables that might determine this, such as exposure to other pathogens, the level of suppression, individual physiological differences, and genetic predispositions. Some may do perfectly fine, others may not.

The other option is to intervene on behalf of the immune system and treat infections with some other method such as antibiotics, or some other method of killing pathogens, most of which would be experimental. I think this is impossible to do as well as the immune system can, but may be useful for short term effect.

You may also be able to inhibit some of the more destructive effects of Chronic inflammation by using TNF inhibitors, either medications, or natural TNF inhibiting substances such as Turmeric. Dosage needed are mostly trial and error.

I think it is possible to do it without medication, but do to the nature of the disease, it think it would be difficult for most of us, at the very least.

I did do without medication for most of my life, so the degree of illness plays a role in this also. It is hard to have a yes or no answer to the question because we all vary too much in our disease process. But for most of us, I would say yes, you will likely need a medication of some type.

Dan
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Well said as usual Dan!! I liked your old sig line better but I can certainly understand your need for the new one!!;)
 

Entchen

Chief Dandelion Picker
+1 Dan.

My GI's view is that medication is needed to both reduce inflammation and to keep it from returning. I've been reading up a storm in the past number of months and I agree with that view. At least while our knowledge is relatively limited, meds are generally the best option we've got. That won't stop me from doing another all-liquid diet, spending time at the Y to get my body into fighting form, etc., to try to help things along, though! Meds are a tool for me; I'm not going to stop trying to learn and do whatever I can to feel and be well.
 
Last edited:

Astra

Moderator
My gastro explained to me that Crohn's is inflammation, and no amount of diet or change of lifestyle will cure inflammation when it strikes!
Therefore the only way to reduce inflammation is meds!
Other intestinal manifestations such as diarrhea can be controlled with diet, or painkillers to reduce joint pain.
But leaving inflammation to soldier on without meds, is asking for trouble, ie, blockage, infection, peritonitis and rupture.
 
It is just a matter of time before everyone in the U.S. will have to have disclaimers everywhere.

I am thinking of putting one one my car. It will read "I am now a grandfather, so please ignore the left blinker that is always on".

Dan
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
It is just a matter of time before everyone in the U.S. will have to have disclaimers everywhere.

I am thinking of putting one one my car. It will read "I am now a grandfather, so please ignore the left blinker that is always on".

Dan
Amen, brother!! As far as I'm concerned though, you are safe here!!! Keep posting your research and personal experiences and let the adults decide for themselves!!!!
 
My Crohn's practically went away for three years with only an over the counter probiotic. I had no other meds for three years and no flares whatsoever. Unfortunately, it came back, even with the probiotics and now I am forced to return to the medication.
 
Are uou sure he had CD????

My husband has been in remission for about 20 years. He got Crohns as a teenager and was on meds until his mid 20's. He used to take Prednisone and was down to 140 pounds when we married. But he has taken hardly anything for years. He does take immodium once in awhile and lactaid. (He is also lactose intolerant.) And he also takes Gaviscon occasionally for acid reflux. He is very particular about what he eats, not a lot of cheese or fatty or starchy foods. He does eat a lot of meats - mostly beef and pork and a little chicken, and he loves a green salad with lots of veggies in it. He rarely eats fruit. He also stays away from citrus if possible (but he loves tomatoes) and he doesn't drink coffee. He also doesn't drink beer, but he occasionally drinks hard liquor and cola. He is even picky about what water he drinks and always drinks either water from our home faucet or one store brand. The different mineral contents in water are very noticeable to him. He goes in to get looked at once every few years and always comes out pretty clean with little or no evidence of Crohns. He also doesn't let stress bother him and doesn't keep things bottled up inside. He does tend to have a temper once in awhile though.
That diet would destroy all CD patients I know! I have doubts that the problem is CD....
 
Yes, in some cases it can be controlled without meds. Mine was. I had a serious flare when I was first diagnosed. I actually am pretty certain I had had CD though for years before that because of all of my digestive issues I've had for as long as I can remember. Anyway, 11 years ago, I had many of the classic symptoms- fever, diahrrhea, pain, headache, and serious blood loss that required 2 transfusions over a 2 week time period. As soon as the doctor came to a diagnosis, I began a natural product specifically for IBD and other inflammatory conditions called UltraInflamX by Metagenics. I took it daily for about two months and took nothing else but kept having regular check ups with the plan of taking meds if the natural failed. Not only did I go into remission but I felt better than I had EVER felt in my life. ALL my digestive symptoms were gone and I had energy like never before. I remained symptom free until now, 11 years later at which point I think I may be having some issues which I am currently trying to get diagnosed!
 
while breastfeeding I needed no meds and had a wonderful life first time two years feeding, second time 2 and a half years! does breastfeeding count as meds!! seriously wish it did! I think everyone needs ssomething and there bodies react differently some might be able to manage with diet herbal remedies and in my case feeding a baby.
 
I think that almost everyone needs meds to help them. If a patient has an incredibly mild case, then maybe not. If the disease cannot get into remission/going into remission, I believe that the damage may become unrepairable and cause many more problems down the road. I havent read about anyone that has CD under control without any medical help.
 
I'm not with the group who say they can cure IBD with herbal remedies and diets etc, but from my lifestyle and experiences I do believe these have a place in helping in most cases. breastfeeding sent me into a wonderful remission, but now am back to reliance on drugs. Even now though, i'm slightly better when I stick to my healthy diet and avoid certain foods than I am when I eat rthings I shouldn't. we will be stuck on meds forever, so we may aswel try to find things which lessen the amount of drugs we do need, if you find diet, or herbal remediees, or even pregnancy/breastfeeding thenn we should grab on to them while they help
 
I know I felt better before starting all these meds! Doc keeps telling me that I'm "puzzling"....that sure makes me feel confident???

I'm still new to all this and just starting to try things on my own - such as I just bought some probiotics at the store today. It seems like it has to be a combo of life with and without meds. At this point, I'm really jealous of those who take meds and it helps. Hoping to join that club soon.
 
I think it depends on the severity of the disease.
Someone with little disease activity may not need meds to control everything.
Others with more severe activity will definitely need meds all the time.
 
Yes. 100% emphatically YES! Crohns can be treated without the use of drugs. My daughter was deathly ill and wheelchair bound when she was referred to Mayo Clinic. They diagnosed her with Crohns and prescribed a regimen of Prednisone and then a maintenance drug. We chose not to follw their conventional wisdom and to treat her exclusively through diet. Today she is healed and eating a normal diet without any maintenance meds. As the old saying goes ... garbage in, garbage out. You can't put garbage into your body and expect good things to come out. As a society we have become too dependent on prescription drugs. They are not natural and they work against our body's own ability to heal itself. They don't heal the body; they simply mask the symptoms. I too had Crohns and I strongly support treating Crohns via diet without prescription meds.
 
Not all drugs are 'not natural' and 'work against our body'. For example, take prednisolone. It is a glucocorticosteroid. I looked up the definition of glucocorticosteroid for those that aren't familiar.

glu·co·cor·ti·coid Cookie(glk-kôrt-koid)
n.
Any of a group of steroid hormones, such as cortisone, that are produced by the adrenal cortex, are involved in carbohydrate, protein, and fat metabolism, and have anti-inflammatory properties.

The adrenal cortex is a part of the body, glucocorticosteroids are produced naturally by the body, so taking something like pred is giving your body a helping hand.

Also some drugs such as aspirin are derived from plants.
 

DustyKat

Super Moderator
Hi CrohnsSurvivor,

It is wonderful to hear that your daughter is able to control her Crohn's through diet. :)

I am curious though...

What if surgery is required?

Does the use of no medication extend across all medical conditions? e.g. Asthma, Type 1 diabetes etc.

Thanks,
Dusty. xxx
 
@Dusty,

Whether or not to use prescription meds is a personal decision. From my perspective, I choose to avoid them. Meds don't heal ... they only mask the symptoms. Take Crohns for example. If people go off their meds, the Crohns symptoms return. My daughter has absolutely no symptoms of Crohns and has never taken one drug to treat it. I think things like asthma and diabetes can be treated without drugs by removing allergens and strengthening your immune system, etc. I'm also realistic and understand that some individuals' cases may be so severe that they could not quit their meds cold turkey, but I do think they could be weaned off of them over time. As a society, I think we put to much confidence in prescription meds without really uncovering and addressing the root source of issues.

@Rebecca85,

I wouldn't consider Prednisone natural. It is chemically produced. While it does mirror a naturally occurring chemical in the body, it is introduced to the body in an artificial way. You say taking pred is like giving your body a helping hand but in reality introducing artificial substances like pred inhibits your body's ability to regulate itself. Aspirin was initially an extract of white willow bark. Current aspirin is not produced in the same way and would not be considered plant based.

As you can tell from my responses, I don't think much of conventional medicine. Hippocrates is considered the Father of Modern Medicine. This is what he had to say:

"If we could give every individual the right amount of nourishment and exercise, not too little and not too much, we would have found the safest way to health."

You may disagree with my opinion, and that is fine. I just think there are better alternatives than relying on prescription meds.
 

KWalker

Moderator
I agree CrohnsSurvivor. I have been on a whole variety of prescription drugs to "treat" my crohns. Being diagnosed at 2 (now 22) I was always made to believe medicine was the only way to survive with crohns. In 2010 I unintentionally stopped taking meds by first missing injection dates and putting them off, and then eventually getting to the point where I was going too long and was afraid if I started up again it would do more harm than good. So I stopped knowing that if things did get bad than I would go to the doctors and get back on medicine.

No difference at all. In fact, I actually felt better because I wasn't getting the side effects that came with the Methotrexate I was taking. Being off all meds now for 2 years, I can honestly say I have no felt absolutely no different now than the rest of my life when I was on medicine. Its something nobody believes when I tell them, but physically I feel no difference whatsoever!

I recently had a scope where the doctor said I have "active crohns" and requested to put me on Imuran. Like yourself, I rejected. I agree with you when you say the meds aren't natural and are also harming your body. To me, its not worth it when the symptoms aren't there, and I understand most people won't agree with that and that's okay. As of now, I will not be taking any meds but would be more than willing to take some sort of natural vitamin if it would be beneficial. I've put some serious thought into it and I'm just not interested in meds right now. It's a personal choice and I'm aware of the potential risks.

I thought I would answer Dusty's question. I have also thought about the what if for surgery and I'm okay with that. After looking at so many people TAKING meds and still requiring surgery I'd consider myself lucky that I was able to enjoy life prior to surgery without needing to rely on meds. I have never had a surgery for crohns so far and when hearing stories of people who have, it really doesn't seem all that bad anyways.

Its all a big what if. Crohns isn't the worst thing to happen to people, nor is surgery. I could get hit by a car tomorrow biking to or from work tomorrow too but I don't feel its necessary to worry about until the time comes.
 
I really think treating Crohn’s without medication depends a lot on the level of severity of disease; particularly it being at least feasible with mild Crohn’s. Also, I think it depends on a patient’s motivation, consistency in taking supplements, and how far they are willing to go to modify diet and adhere to it unconditionally. That said, in a flare situation I’m sure medication could be beneficial for at least a short period of time. However, it’s important to qualify what “mild Crohn’s” is: to me this is a patient who has episodic rather than continuous symptoms; never needed surgery or had serious fistulas or obstructions; flare pain level is only uncomfortable, not incapacitating; and whose disease does not tend to worsen over time [not everyone’s does]. With these criteria, there are certainly a few on this blog who could, and do, control their disease without medication. It certainly would not work for everyone!
 

kiny

Well-known member
Yes. 100% emphatically YES! Crohns can be treated without the use of drugs. My daughter was deathly ill and wheelchair bound when she was referred to Mayo Clinic. They diagnosed her with Crohns and prescribed a regimen of Prednisone and then a maintenance drug. We chose not to follw their conventional wisdom and to treat her exclusively through diet. Today she is healed and eating a normal diet without any maintenance meds. As the old saying goes ... garbage in, garbage out. You can't put garbage into your body and expect good things to come out. As a society we have become too dependent on prescription drugs. They are not natural and they work against our body's own ability to heal itself. They don't heal the body; they simply mask the symptoms. I too had Crohns and I strongly support treating Crohns via diet without prescription meds.

How long has she been ok for though. It takes a long time for the disease to flare back up after the mucosa has healed completely.

Ppl who say like "I have been in remission for 3 months", uhm yeah, you have no idea if you're in remission or not at all, since it takes a long time before the mucosa barrier is broken down and ulcers and wounds start showing up, if you're in remission for over a year without any meds whatsoever then you can say you're in remission.


Anyone who thinks they can just go off meds on a flare and try a diet, good luck, but I bet you the next appointment for that person will be surgery. Because you do not cure inflammation and open wounds, because that's what a flare is, open wounds, with a diet, anyone who thinks that is playing russian roulette. Don't really like when someone says that all medicine is bad or garbage and you can cure yourself "naturally", good luck with that, each time you get inflammation and feel pain, what actually happens is that your intestine is trying to heal itself and you're getting scars, and each of those scars decreases the amount of flexibility of the mucosa, until your intestine is basically garbage and useless, that's what happens to those people, and the solution for them is cutting it out. Good luck with the diets on a flare.
 

kiny

Well-known member
Whether or not to use prescription meds is a personal decision. From my perspective, I choose to avoid them. Meds don't heal ... they only mask the symptoms.
When someone has a perforation and is bleeding from their gut, they give them a blood transfusion, glutamine and glucose in huge amounts, I know cause I had it happen. What are you going to say to your daughter when it happens "try a diet, you might die but medicine is garbage"?

It's no longer a personal opinion, a doctor will tell that person to listen or sign a paper that they're no longer responsible for that person when they're no longer around, most will choose to listen. The idea that prescription drugs are inherently bad is a really bad mindset to have.

Diets have their place when the person is in remission, but when someone is suffering from crohn and the disease needs to be under control as fast as possible, a diet is 100% useless.
 

KWalker

Moderator
I seem to be doing well without medicine. Its been two years since I've had medicine and I'm not even in remission. I don't even follow a diet but by eating healthy I can manage without medicine so I don't think its right for you to say medicine is the only answer. I'd even put money on it and say I'm doing better without medicine than you are with it kiny. Maybe people get so dependant on medicine and get afraid to try a med-free lifestyle that after awhile these meds (which everybody knows aren't healthy for our bodies) that it becomes harmful to us so the damage it could potentially cause forces us to stay on them. People take vitamins in the morning because they're beneficial and a requirement to proper body health. You don't hear doctors or pharmacists telling healthy people to take a shot of humira or some imuran in the morning. Our bodies need vitamins, we don't need the chemicals put into medicine. And doesn't it bother you knowing the medicine you take everyday isn't ever going to cure your disease? Or what about knowing that the second you stop those meds your body will go downhill again. Isn't medicine supposed to fix that?

I've had crohns for 20 years now. I've never had bowel surgery and I've had surgery for an abscess, something that can happen to anyone. When I was taking medicine I always felt like crap. Bad headaches, insomnia and problems sleeping, nausea, etc but crohns wise I didn't feel a difference. Now without meds I don't have any of those problems and with that I can be more active, I have an appetite back and that causes me to be healthier and gives me less stress both on my mind and body (a contributor to crohns).

I'm not at all against medicine but its not the only option. Of course some people are more severe than others but how do you know if you can manage your crohns without meds if you're too scared to try? And as far as your comment where you said "if you don't take meds you're next visit will be talking about surgery". I could get hit by a car tomorrow too but I'm not going to worry about it my whole life.
 

kiny

Well-known member
And as far as your comment where you said "if you don't take meds you're next visit will be talking about surgery". I could get hit by a car tomorrow too but I'm not going to worry about it my whole life.
Medicine puts people in remission, that's what stops the scarring. I'm in 100% remission on meds, and without meds almost no one who has crohn goes into full remission. What you are potentially doing is scarring yourself which is going to lead to surgery.

And when you say you don't mind surgery, you should talk to some people who have had surgery, most don't have surgery just once. I talked to a girl, 25 years of age, she had surgery 8 times for crohn, reason: not taking her meds.

The amount of surgery needed for crohn has decreased year after year thanks to medecine. I have no problem with people who are against med A or B, but I do have a problem with people who are against all meds just because they have this ideological idea, an idea that's wrong btw, that all meds are inherently bad, down the line these people will run into issues.
 

KWalker

Moderator
I'm not against medicine at all and I'm 100% willing to go on medicine if that time comes. I would definately choose medicine over surgery but right I don't need either. We should talk to the people on here with stoma surgery. I bet they'll tell you how much they love their lives now because they feel so much better with their crohns so they can live a normal life.
 

kiny

Well-known member
If your doc said to you that you have active crohn and need to go on imuran, it's not a question of if, but when you're going to ask for meds. And each time you do that you make it harder on your own body to put itself into remission since each time deeper and deeper mucosal layers are involved. Not my job to tell someone anything, but I'm a person who took those risks too and got lucky, but many won't be as lucky as me, if your doc says you have active crohns, it's gonig to get worse, not better. I see plenty of people who say they are on diets all the time, but the truth is that many of them are not fully in remission, they still have flares, remission is without flares, if you have flares and you rely on a diet, it's going to get worse, guaranteed. Ok, I'm done ranting now.
 
Yes. 100% emphatically YES! Crohns can be treated without the use of drugs. My daughter was deathly ill and wheelchair bound when she was referred to Mayo Clinic. They diagnosed her with Crohns and prescribed a regimen of Prednisone and then a maintenance drug. We chose not to follw their conventional wisdom and to treat her exclusively through diet. Today she is healed and eating a normal diet without any maintenance meds. As the old saying goes ... garbage in, garbage out. You can't put garbage into your body and expect good things to come out. As a society we have become too dependent on prescription drugs. They are not natural and they work against our body's own ability to heal itself. They don't heal the body; they simply mask the symptoms. I too had Crohns and I strongly support treating Crohns via diet without prescription meds.
I have to say that is a very brave choice you made, I can understand taking the risk on yourself but to make that choice for someone else especially a child that is so unwell. I am pleased for you however that she managed to get into remission and the story has a happy ending. For someone with such severe symptoms a course of pred can work wonders in reducing the harmful effects of chronic inflammation and help reduce permanent damage and scar tissue to the intestines. It also speeds up the healing process and therefore reduce a person's unnecessary pain and suffering.

I don't agree with your statement however that meds work against our body's own ability to heal itself and can mask the symptoms. Medicine has come along way in fact many meds enhance the healing process but even that's too general a statement as many different meds work in many different ways. It can in the end be down to quality of life for some people. Medicine is evolving for a reason and many lives are saved by it.

I personally don't take meds now as I have been in remission for over a year since having surgery. I am not against them and certainly would take them if I suffer a flare. I hope your daughter remains healthy.
 
I had ileostomy surgery at the age of 17 back in the 1980s. I was on 80 mgs of prednisone as that was the only thing available. Sulfa caused a serious reaction so the GI stopped that.

I tried diet therapy but that didn't get rid of the inflammation, fistulas, and abscesses that plagued my large colon as the disease was getting worse...I lost over 50 pounds, couldn't eat due to being in severe pain, had a fever, and my blood work was all over the place.

Having ostomy surgery was the BEST thing that ever happened to me. I have my life back and I am on maintenance medication to stay in remission. Belonging to a local ostomy support group also helped me in accepting my condition as I learned so many things such as exercise, what to wear after surgery, dating issues, diet, and which hospitals and MDs were more well versed in IBD care.
 
Can't say reading these postings is making my trepidation about meds any better. I don't know yet what the GI will suggest but just by reading about most of the meds, I pretty much know they aren't options for me out of the gate. I'm allergic to almost all antibiotics now so doctors don't like to give me any unless they absolutely can't avoid it and then they hold their collective breath. (I'm also allergic to several pain meds and Naproxen which I'm certain caused all of this mess and every doctor I've seen says the same.) I'm not too sure that immuno-supressors of any sort are a good idea with me given my family history of cancer/stomach cancer and gluacoma (all five of my brothers have pressure to outright gluacoma).

I'll admit diet is very hard for me as any form of starch requiring amylase to break it down sets off my symptoms and that is in everything (including all of these drugs), but it may be my only option outside of trying something like accupuncture or biofeedback to convince my body that it doesn't need to produce an inflammation response to a perceived threat. And considering what I've read so far and the fact that my major symptoms are inflammation and basically a shut down of an area of the colon that produces the exact opposite problem of running to the bathroom 20 times a day (ever), it looks like I'm headed for surgery no matter what so why risk cancer or an anaphylactic reaction?

I also have to add that I really don't have faith in doctors and it's based on experience. I was bombarded with antibiotics in the late 50's and early 60's which lead to all of my allergies to antibiotics. Then I had a doctor who thought migraines were caused by hysteria in women and he proceeded to give me Quaaludes and Darvon three times a day for five years. By the end I was yellow and was having hallucinations. I went off the meds and no headaches. It was only after I had a tubal ligation and went off the pill that the migraines came back. Then I was treated with Beta blockers, calcium blockers, high blood pressure meds, etc with no help so they gave me Stadol for pain, which is now a controlled substance. It didn't help at all but since it's a synthetic opiate, I hallucinated when I took it and couldn't work. Again, it was a "shut up and don't bother us" drug. Finally, I developed fibroid tumors and they got the brainy idea to treat that with Depo which did nothing to stop my bleeding but caused me to gain 30 lbs in one month. After I had a partial hysterectomy they finally figured out I had low Estrogen and that's what caused the migraines and the fibroids. If even one of those doctors had pulled their head out of their you-know-whats, they would have tested me and figured out the real problem. And those are only the highlights. I can tell you unequivocally that no major issue I've had has been successfully treated by a doctor with the one exception of the doctor who figured out I had low estrogen. To say I have a lack of faith in doctors now would be an understatement. I consider them dangerous and for me they have been. It was a doctor who told me to take Naproxen which is why I'm in the situation I am now (and every doctor I've seen for this has quickly pointed to Naproxen as the culprit). But that is me and I have my own issues. My feeling is whatever works for anyone else is what they should do. If people have had success with meds, I'm happy that it's worked for them. It just has not been my experience.

I understand where everyone is coming from on this thread. Honestly, I do. I'm just not sure which end is up for me right now and nothing I'm reading is making me feel any better. :\
 
There is a book The Maker's Diet by Jordan S Rubin and he had Crohn's...on his "death bed" but was tired of taking meds so he went to the Bible and well he is now healthy and "Cured from Crohn's" because of this diet.
I have been too afraid and not the right time in my life to try it but I have heard the diet works.
 
I have had active crohn's for 21 year now...I am either allergic or non-responsive to the meds used to treat CD....I was able to use prednisone five seperate times before it stopped working all together and of course those were the usual short stents, not using it indefinitely....and that was within the first 6 yrs of being sick.

My CD was affecting my colon, small intestine, anus and rectum when I was DX (the anus with perianal crohn's skin tags) these skin tags were misDX as being hemmies, long story short, they were banded while in a flare (large and hard) and as a result I was told by my colon/retum surgeon that I would likely never find a full remission with my CD due to this being done to my skintags. He was correct...21 yrs later and no full remission but...

Since not being on any meds (other than pred a handfull of times) my CD managed to stop affecting my small intestine and has not returned (it affected me the first 2 yrs of getting sick) comes and goes in the rectum (but has not returned since I started using probiotics daily over 6 yrs ago now) has remained constant in the colon and anus *with the perianal crohn's skin tags* just as my specialist predicted it likely would.

And here I am, still alive and kicking...granted I've never been in a full remission but there was no guarantee *under my special circumstances with my perianal issues* that I ever would see a full remission even if I was able to take meds for CD anyways.

So, no, it will likely not kill you as a result and my flares over 2 decades without meds have varied from moderate to severe.

IBD has more of a mind of it's own that we don't give it credit for...and it's because researchers have found that genetically speaking, each persons IBD based on a cluster of genes they have found, contribute to the development, behaviour and severity over time for each patient, which is why no 2 IBDers are the same.

You can however have a greater risk of developing IBS (irrirable bowel syndrom) as a result of have severe/long flares (which did happen to me).

I have found that going the alternative route has helped for me, along with regular exercise and altering my diet (no processed or fast-foods/beverages what so ever).

Here is a list of my alternatives that I have found to aid me some, but I still have frequency issues (even though my stools are formed) and urgency (even though my stools are formed);



bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day and vitamin D
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.


While on no RX, my colonsocpopies have varied from my colon looking horrible to not bad and my symptoms at those times equalled to the severity of inflammation I was having as well.
 

DustyKat

Super Moderator
My daughter went with no meds for quite some time because she was undiagnosed. She started taking a probiotic and as we all know diet like everything else is highly individual with disease. She modified her diet to what she could tolerate but her symptoms continued to worsen. In the end we came to within 24 hours of losing her. Yes, people do die from this disease.

As the old saying goes ... garbage in, garbage out. You can't put garbage into your body and expect good things to come out. As a society we have become too dependent on prescription drugs. They are not natural and they work against our body's own ability to heal itself. They don't heal the body; they simply mask the symptoms. I too had Crohns and I strongly support treating Crohns via diet without prescription meds.
Again I say that I am happy that this path has worked for you. On the other hand though I do feel it is disrespectful to imply that for those that have gone the medication path that they are somehow foolish and have taken the easy way out. Perhaps I am reading this wrong and if I am them I apologise.

I know of many, many people here that trodden the same path you have to the very letter and it has failed them and it was not through want of trying for it to succeed. Not everyone has the type of disease that buys them time, my own children don't and regardless of what I did it marched on relentlessly and cruelly. Does that make me a failure in some way? Maybe it does but I can assure everyone that reads this that I carry enough guilt to last a thousand lifetimes.

This tale has nothing to do with Crohn's but again highlights that when it comes to disease there are no hard and fast rules. Many years ago a dear friend of mine developed a very aggressive form of leukaemia. At the time the survival rate for this type of cancer was very, very small indeed. He was admitted to a large city hospital that saw about 6 cases of this leukaemia a year. At the time he was admitted there were another three patients being treated for the same thing. I came to know the other patients quite well...a mother, a father and a single man, all in their thirties. Each one of them made drastic changes to their lifestyle, the most notable being diet and exercise. My friend made none, he continued to drink alcohol, smoke and eat crap. He had the chemo and left the hospital and over the next two years the other three patients died. Eighteen years later my friend is still going strong and he still hasn't changed one thing about the way he lives his life. I still shake my head in bewilderment.

We need to rejoice in and support the success of others but at the same time respect and understand that our own journey is not theirs, that their choices are no less honourable than ours.

Dusty. xxx
 
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Jennifer

Adminstrator
Staff member
Location
SLO
So, no, it will likely not kill you as a result...
Actually yes it can. This is just one study that shows people dying from Crohn's disease and many on the forum have admitted to almost dying due to stopping medication (myself included).

"Six hundred and seventy one patients (52.5% women) with Crohn's disease seen at Leiden University Hospital between 1934 and 1984 were identified. Follow up was 98.2% complete. Sixty four (9.7%) of the 659 patients died. The cause of death was related to Crohn's disease in 34 patients, probably related to the disease in four, and unrelated, from incidental causes, in 25. The cause of death could not be identified in one patient. There was a significant decrease of deaths related to the disease after 1973. Causes of death such as amyloidosis and malnutrition have disappeared and postoperative deaths have decreased. The standardised mortality ratio showed an excess mortality of 2.23 for all patients. It was higher for women (3.30) than for men (1.76). A comparison of two recent 10 year periods showed a significant decrease in standardised mortality ratio in men but not in women. Patients whose disease started before the age of 20 years had an excess mortality compared with older patients. This study supports the view that the prognosis of Crohn's disease has improved in general but high quality medical and surgical management is important particularly for younger patients." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1378762/
 

KWalker

Moderator
Yes, I don't think its right for anybody to say whether or not another individual is right or wrong for taking/not taking meds (with exception to doctors voicing their opinions). It has and always be an ongoing debate about whether or not crohns can be treated without the help of medication and it is different for every single individual. Sure I don't take medicine. Its not making my crohns any better, but in that respect, but physically its not making my crohns any worse right now. Some people could miss one little dose of their meds and fly off the deep end with things. I also think that if medicine is working and the risks are minimal, why would you want to change that? My main reason that I stopped medicine was because I wasn't feeling any results and without taking the meds I felt the exact same.

Dustykat: how old was your daughter when you were close to losing her? My little brother was undiagosed and ended up in the hospital in his teens with emergency surgery and now has a stoma. The doctor said if he would have waited a day or two more, he may not be here today. Its certainly not something to play with and I think for those people wanting to try the med-free route, the second you see things going downhill to get into a doctor and get something.
 

DustyKat

Super Moderator
Hey KW,

Sarah was 14. Sounds very much like your brother, bless him, only she didn't end up with a stoma.

Dusty. xxx
 

KWalker

Moderator
Oh ok. I would think children would be at greater risk of fatality with crohns at a younger age (under 5) due to the smaller, weaker immune systems. By 14 although you're not fully developed, you would be much stronger when it comes to immunity. I'm glad Sarah didn't require a stoma and hope she doesn't run into any life threatening situations again.
 

kiny

Well-known member
I think if many people could see their intestine like they could see a wound they would change their mind in the blink of an eye.

Maybe some people are fine without medicine, but I know many end up in ER.

When you feel pain, it is not like tummy pain of a normal person, it means your intestine is filled with ulcers and inflammation. Open up google and look up crohn's disease and look at a few images of a colonoscopy, and tell me if you still feel the same way.

Another point I think many people don't seem to understand or want to understand, is that a wound has 2 ways of healing either it heals normally, or it does not heal normally and you get fibrosis, each time you have pain and the wound needs to heal you run the risk of getting more fibrosis.

People say "I don't need meds, I'm fine, I still have issues now and then". Those "issues" are the open wounds that never healed properly, and each time they heal the wrong way fibrosis increases. And you will end up in ER that way, it's not a matter of if but when.

It's not just that crohn is potentially deadly, it's that if you take no medication you are also ignoring all the steps in between.

If you decide to go off meds, at least take something like pentasa or something, completely going off meds if you still have pain is really dangerous, that's just my opinion.

I also hope that all those "This is how I cured my crohn" sites from people are banned one day, because they do not care about your health one single iota, they want your money, and none of them will be there either when the doctor tells you that the only solution is surgery.
 
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I've had CD for 21 yrs and have never ended up in the ER and based on most colonoscopies, my disease was considered severe more often than not....everyone is different and not everyone can tolerate any of the meds...you can't take them if you're allergic to them...chances are still very slim for dying from CD due to not being on meds...and as someone else pointed out...the meds are really masking the symptoms of the disease and not necessarily healing it (especially pred) and, many of the side effects hold quite a risk for some people as well. I haven't had any intestinal surgeries either. My risk of colon cancer is higher due to it affecting my colon for 21 yrs straight but so far, so good, no cancer yet.

In my experiance...it was asacol that nearly killed me, not my CD...we're all different.
 

Jennifer

Adminstrator
Staff member
Location
SLO
Pain, anti diarrhea and constipation meds mask symptoms (there's a cause behind these symptoms which is not being treated). Steroids reduce inflammation. Anti-inflammatory agents help prevent further inflammation. Immune suppressants help hold the disease at bay.

There's a difference between masking symptoms and actually treating them. Understand that "treatment" is not the same as "cure." There is no cure. Only treatment.
 
I don't know about “treated”. I think the question might be more meaningful if "treated" was replaced with "managed".

I believe I have had a mild crohns problem since the mid-80's approximately, when I often spent hours a night sitting up in pain, drinking beer or coke and taking antacid tablets to alleviate the pain in my gut. But I never knew what it was or what caused it.

It was something that only occasionally bothered me, until around 2007, and slowly the gut pain and bouts of diahorea and/or constipation increased in frequency and severity. I even started having colonoscopys every few years on recommendation of my doctor due to a family history of colon cancer. But all they found was the occasional polyp, which was removed. Several overseas trips during this time were memorable in part due to my obsession with knowing the whereabouts of the nearest toilet at all times. I have written elsewhere about my grand tour of the toilets of New York, interspersed with visits to notable tourist attractions.

Through all of this, whether at home or dealing with the local cuisine of the USA or of China, I "managed" my bowel problems, which still didn't have a name. It was only about 12 months ago, when I told my GP that I had been experiencing night sweats, and bouts of severe shivering during the daytime, that he started to take some notice. To cut a long story short, I had a series of tests which eventually ended up in May this year with my official diagnosis of Crohn's disease in the terminal ileum.

It was only then that I realised from reading the web how severe this disease could become, and the critical need to review my diet and try to find out which foods are safe for me and which were not.

Since the beginning of May, I have been watching my diet, and also have had several months on prednisolone (prednisone) which I am nearly weaned off now, and a disastrous encounter with Imuran (which, after a short time launched me into a full-blown flare-up of Crohn's symptoms, the like of which I have never had prior to being introduced to these medications).

To get to the point here, I have "managed" my Crohn's disease for many years with no knowledge that all of Crohn's medications or Crohn's diets. Since being diagnosed I have kept quite meticulous records of what I have eaten, and when, and what symptoms my experienced afterward. I have experimented, albeit very carefully, with different foods and different variations of the trimmings and slowly reaching the point where I hope (believe?) that I might be able to "manage" my crohns using a combination of diet, continuing to have blood tests reviewed by my Gastroenterologist, and if need be the occasional CT scan or endoscopy or colonoscopy so that he can have a look at what's actually happening in my gut.

I know what it feels like when my gut reacts badly to the foods I've eaten. In the last month or two I have discovered what it feels like (ie: how good it feels) when my gut can cope with the foods I have eaten. My Gastroenterologist seems to think that without medications the inflammation in my gut will continue to get worse to the point where I will need to have surgery. He says the only way that I can avoid surgery is with meds. But I believe (or it makes sense to me) that if my gut is inflamed and getting worse, I will know because of the pain. If I am wrong, ongoing blood tests should show up what's happening. And periodic scope exams will act as a backstop.

Perhaps I'm wrong in all this, (please tell me if I am), and if so I may well have to have surgery down the track. But then again I could take meds for years, and still need surgery.

So my answer to the question is, I believe/hope that Crohn's can be managed without the medication, and I am wanting to give it a try. (Wish me luck!)
 
I know if it hadn't been for meds & 2 bouts of surgery I would have been without a mother at quite a young age. She always tried her best to keep herself healthy but that didn't always work.
I have also been quite lucky due to the fact that I had a colonoscopy as a precaution when my dad had colon cancer. They found Crohns in the TI then.
I had symptoms for many years, some quite severe but all this time I thought I had quite bad IBS. Then 3 years ago along came the mouth ulcers, terrible joint pain & skin problems.
At this time I thought I was quite run down due to having kidney disease & bladder problems for which I DO TAKE MEDICATION so that I wouldn't suffer kidney failure as I already have reduced function.
I am going In for a resection on the 31st of July. The years of healthy eating & trying so very hard to keep well have had little difference on my Crohn's. If I could have only seen what was going on with my insides earlier then maybe meds would have been able to help me. Then again maybe not.
From my experience of meeting people with very mild Crohn's they do seem to be able to manage with diet & lifestyle but unfortunately It rarely stays that way & at some point either meds, surgery or both may be needed to help that individual live but also have a quality of life.
I know if taking meds long term helps me live a full & active family & working life then I am all for it.
 

KWalker

Moderator
Gra. You pretty much said exactly everything I've been thinking/trying to make sense. There are so many people that go YEARS without diagnosis and therefore no medicine. I also strongly agree that medicine for crohns can't be a "miracle drug" if A. People are having terrible reactions, and even some more severe results than crohns itself and B. It still leads to surgery for some. Hence, really being on medicine wouldn't make most better off than I am right now.


Like you said though, can crohns be treated without medicine? No. But I do personally believe that one can manage their crohns without the use of medicine given the right circumstances.
 
I've been on Remicade for the last 2-3 years. Not that bad, just one 2-hour infusion every 8 weeks, but $$$ if you don't have good insurance. Fortunately Aetna covered it with just the specialist copay each time. Anyway I am under new insurance and in a new state and I'm seriously considering trying to come off medication alltogether. I've identified triggers that I think have been setting me off and eliminated them from my diet. I'm not completely "hippie" though, I will be looking for a GI here in Lexington/Columbia just in case.

On that note, anyone have any suggestions for a good GI here that takes Blue Cross/Blue Shield? You can post here or pm me.

Thanks,
Mike
 
I think you don't need any medication, as long as you eat healthy. I stopped medication for 3 weeks and I feel better then before. I don't believe crohn is an auto immune disease. The incidence and prevalence rates of Crohn's disease in China for example are much lower then Western countries. In my opinion it's the bad high sugar low fat culture, causing unhealthy bacteria in your bowels. But I'm not 100% sure, maybe later in my life I will still suffer from crohn, who knows. For now I'm perfectly happy without medication.
 
I think if many people could see their intestine like they could see a wound they would change their mind in the blink of an eye.

Maybe some people are fine without medicine, but I know many end up in ER.

When you feel pain, it is not like tummy pain of a normal person, it means your intestine is filled with ulcers and inflammation. Open up google and look up crohn's disease and look at a few images of a colonoscopy, and tell me if you still feel the same way.

Another point I think many people don't seem to understand or want to understand, is that a wound has 2 ways of healing either it heals normally, or it does not heal normally and you get fibrosis, each time you have pain and the wound needs to heal you run the risk of getting more fibrosis.

People say "I don't need meds, I'm fine, I still have issues now and then". Those "issues" are the open wounds that never healed properly, and each time they heal the wrong way fibrosis increases. And you will end up in ER that way, it's not a matter of if but when.

It's not just that crohn is potentially deadly, it's that if you take no medication you are also ignoring all the steps in between.

If you decide to go off meds, at least take something like pentasa or something, completely going off meds if you still have pain is really dangerous, that's just my opinion.

I also hope that all those "This is how I cured my crohn" sites from people are banned one day, because they do not care about your health one single iota, they want your money, and none of them will be there either when the doctor tells you that the only solution is surgery.
Hmmm, those words are really depressing, I hope they aren't true, otherwise I will find out.

I recently (3 weeks ago) stopped all medicine, after being diagnosed 6 months ago. I still have (very) minor issues, but i always had them, on pentasa they seemed to be worse, especially right after taking it. I will keep on posting honestly what happens to me. I really don't believe that if your condition worsens, you still feel better.
 
xardas, you've been in remission for 3 weeks. That's great! But it will most likely come back. I spent 6 years in med-free remission. I had a routine scope that showed microscopic inflammation (scope looked normal, biopsies showed minor issues). I wasn't having any issues. I went ahead and started on Apriso (pretty mild drug). Unfortunately, I flew into a severe flare a year or so later that I'm still trying to control, 21 months later. The meds aren't getting me all the way to remission, but I'm a lot better than I was before meds.
 
Well, maybe I misunderstoond this topic and still confused about what my doctors tell me. They said I could never stop taking meds and I had to continue pentasa, even though i'm in remission. I hope it can be like this a long time.
 
I was diagnosed with 'mild to moderate' Crohn's about 10 months ago. When I was first diagnosed my GI informed me that diet had NOTHING to do with controlling Crohn's symptoms, and that I should IMMEDIATELY get on Remicadee or that other drug that gives people Lymphoma.

Instead, I went to a nutritionist that specializes in actually HEALING the body, and have been on supplements and a strict diet since.

I have had no relapse with the exception of some minor pains which I can only imagine are the ulcers reacting to stress on any given day.

I went through what I believe to be my second official flare-up, and instead of being bed/toilet ridden for a month, I had a little bit of pain and discomfort for a few days and then it stopped.

The only reason I thought that I MIGHT be able to control my crohns with diet is because of the strict way my wife has to eat with her candida. It's insanely limited and exspensive to eat the way I do, but I would rather spend money and eat healthy than be on those horrendous drugs that destroy your immune system and basically let your body eat itself alive.

After reading some of the threads in this forum I'm amazed at how little you people seem to know about the power of food... EVERYTHING is DIRECTLY connected with what we eat, and I guarentee that there are a TON of people that could get off most if not all medications if they drastically changed their diet.

Now, I know people have crohns WAYYYYYY worse than I do and absolutely NEED to take medications to have any quality of life, I'm just disgusted with the medical field for immediately telling someone like ME to go on HARDCORE drugs like Remicadee instead of trying to actually 'get better' with diet, exercise, and supplements first.

Just because they couldn't link any one type of food to 'causing' crohns, doesn't mean the food we ingest has no correlation with how sick we get, it's just an asinine view to have.
 
"It's not just that crohn is potentially deadly, it's that if you take no medication you are also ignoring all the steps in between.

If you decide to go off meds, at least take something like pentasa or something, completely going off meds if you still have pain is really dangerous, that's just my opinion."

Maybe you need the drugs to control your symptoms, but don't be delusional that they do anything more than that... block your symptoms. Otherwise all these people on medication wouldn't be talking about all the surgeries theyve continually had to go through WHILE taking new medications...

So which is it? Do medications keep you from getting sick, or do they just mess up your immune system and bowel bacterial balance? Because it seems to me that EVERY person that is espousing needing meds either:

1. Has the disease WAY WORSE than I do (definitely a possibility, though my first flare-up was insanely brutal)

2. Has had multiple surgeries AFTER being on different drugs for long periods of time... or it seems the new drugs actually TRIGGERED the need for surgery...

I hope I'm one of the lucky ones that can keep it under control without surgery...
 
I hope you are able to control things through diet, we've tried them but for a growing child they have not been successful. The only thing that has worked for us is remicade. It has allowed my teenage son to have a normal life.
All the while we thought his disease was under control because he had little to no pain or symptoms. He did not grow or gain weight for years. After lots of testing to see if there was not something else causing the lack of growth. We investigated into his crohn's deeper only to find he had inflammation in his small intestine (all his blood labs were normal). After a year on remicade and a gain of 35 pounds and 7" in height, he has caught up to most of his peers and his quality of life and self image has improved by a 100%.
So far no surgeries and hoping to keep it that way as well. I think diet definitely plays a big role but as far as keeping the disease at bay we have not had any luck and I think we have tried everyone of them out there between my husband's diagnosis over 20 years ago and our son's 5 years ago.
Good luck
 
Just to clarify please make sure you are following up with doctor to insure your disease is indeed under control I have heard too many horror stories of simmering inflammation and being asymptomatic only to end up in the emergency room.
 
I was without meds for 15 years and in remission that whole time, so I guess it's possible. But once you have a flair, medication is needed. I've had my current symptoms for several months because I didn't realize it was a crohns flair and as soon as I started the medication, it got better. So I'm a big fan of medication.
 
I thought I had severe IBS but actually had crohns for 6 years before my first what I personally call 'flare'. In that first 3 years I wasnt on any pain meds for my other illnesses and lived ok with it. But it all got worse from there and due to not being on any medication I then had strictures. So I think some people can but should be very cautious and keep being tested. The majority I would say need medication otherwise it will get worse, cause strictures, fistulas(?), and could end up needing surgery due to it being left to get worse. Diet helps keep flares at bay but I dont believe in any miracle cure diets personally. I just cut out what I react to (dairy, fruit, veg and spicy foods) so I dont bring on a flare up.
 

Bufford

Well-known member
I went 10 years without treatment, but I still had to cope with fistulas that would bleed at times. I had a good balance and despite minor flares I coped with it well. Then came Remicade and after the 3 rd infusion it went against me and I am currently somewhere between being a train wreck and a plane wreck. I am going back to the all natural route of diet, with pain and stress controls.
 
Hello there. To answer your question I once had a psychologist who would come out for home visits to check up on me weekly ( due to severe depression and anxiety ) she was a very nice woman and I liked her due to her also having Crohn's made her very understanding about things. Anyway, she went 5 years without an medication with very minor symptoms before taking a flare up, where as I on the other hand wouldn't last a week without medications. So it's honestly up to you if you want to go off all of your medicines and take the risk of having a severe flare up or stay on them. Or if you're talking about going into remission without use of medications I think you would need atleast one medicine. - I hope this helped!
 
Hi

I know of someone who controls his Crohn's through diet.

There are many different types of Crohn's disease and diet may not work for everyone.

Best to wait until your Crohn's has been in remission for at least a couple of months then try seeing a qualified dietitian with expertise and knowledge of Crohn's.
 
If you're flaring, you need medication to deal with the flare up. It will not go on its own, it will only get worse and you could die. Speaking from experience before I was diagnosed. However, if you're in remission you could go down the avenue of not taking any medication. I don't recommend this and you have to run a trial and error to see if it works for you or not.

I've recently stopped taking my medication and only take prednisolone if I flare. I found taking maintenance medication actually worsens my condition, I experience joint pains, fatigue and a bad stomach with medication. Many, many people need to take medication daily to control their symptons and stay in remission. A doctor will absolutely want you on prescription medication and will not suggest not taking it. You will have to run trials to see what works for you.
 

Bufford

Well-known member
Judging from my own experience and from what I am reading from others here, is that we are all different. Some will need the heavy meds for life it would appear, others can control it with maintenance meds and diet.
I needed the big meds to get remission, but now can manage CD reasonably well with diet and natural supplements. I found the side effects sometimes outweighs the benefit of the drug, while others (Remicade) was incompatible and could have killed me. My belief is that tapering down to the least amount of meds to maintain remission is the best route.
 
I just read this thread from the very beginning, interesting information and opinions offered here. I feel everyone is correct from their point of view, which is formed from their expedience with CD. Everyone can agree that every case is different, so each person takes a different approach to treatment or management of their symptoms.

Here is where I'm stuck......

1) CD is an autoimmune diseases, correct? Meaning our bodies attacks itself. The inflammation process is normal and goes on routinely in our bodies to fight invaders, stops once the invader is destroyed and the inflammation stops. With autoimmune, the attack never stops. The reason we get an autoimmune disease is still unknown, but there are theories and most have an opinion. But it can't be healed, stopped or reversed by food or strictly natural approaches, correct?

2) I believe in the research that supports inflammation will destroy organs, bones, tissue, etc if allowed to continue. Ask someone who has required surgery to remove diseased organs, intestines, suffers with joint pain, etc. What natural product/food stops this inflammation process? I know that certain foods have anti inflammatory properties and may not contribute to further inflammation, but to stop the kind of inflammation that destroys your colon and intestine, I find that hard to believe.

3) I support prescription medicine interventions with many supplements, because I feel it's important to balance the two. Do they, or certain food actually help my CD??, I have no idea. But it comforts me to support my bodies ability to heal itself, when it has that ability.

I would like to hear from anybody who has moderate to severe CD, who can offer solid alternative symptom relief information. Even though I don't particularly believe it can be done, I'm open to controlling this naturally.

Currently on Remicade 500mg every 6 weeks. About to start MTX 10mg for possible Lupus/antibodies formed to Remicade/RA? I take every known supplement recommended to CD patients and those that have anti inflammatory properties.

Thank you
 
I'm not with the group who say they can cure IBD with herbal remedies and diets etc, but from my lifestyle and experiences I do believe these have a place in helping in most cases. breastfeeding sent me into a wonderful remission, but now am back to reliance on drugs. Even now though, i'm slightly better when I stick to my healthy diet and avoid certain foods than I am when I eat rthings I shouldn't. we will be stuck on meds forever, so we may aswel try to find things which lessen the amount of drugs we do need, if you find diet, or herbal remediees, or even pregnancy/breastfeeding thenn we should grab on to them while they help
It's interesting you keep saying this. I believe you but I had the opposite experience. My first major flair was while I was breastfeeding my baby. He was about 8 months old....when I started feeling super sick I stopped breastfeeding because I was afraid I would give him something. I thought I was dying from cancer or something! A few weeks later I was diagnosed with crohns (dr said I was an 8 out of 10).
 
To the people that are anti meds, just curious are you anti-vaxx too?

I'm all for modern medicine, that being said I've always been someone who seems to experience the side effects. I was diagnosed with CD in January. I started remicade in February. After the introductory phase my blood was tested and it appears I have developed antibodies. I am now going every four weeks for remicade with a higher dose. My next appointment is this Friday. I'm not sure the medicine is working right now, I did have another mini-flare this past month. They will be checking my antibody levels again at my next appt.

However, prior to taking the prednisone, I couldn't keep anything in my body. I was going #2 8-12 times a day and yes it was very painful and bloody. Sometimes I was literally in tears.

I have always been very healthy. I exercise regularly. Was a collegiate athlete, have run marathons, etc. my diet wasn't the best but I was a healthy weight and never had major health issues. I rarely ever drank (maybe once a year at most), never smoked and never took drugs, So in my case, no I don't think it can be controlled by diet alone. In fact even now, eating super careful (have been since January) I still had a miniflare....lasted about a week.

I would love to not need meds, but I don't want surgery, I don't want colon cancer and I want to be able to have red meat again! I'm hopeful the medicine will put me in remission and enable me to do so (in moderation) at some point in my future.
 
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