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Crohn's Disease Forum » General IBD Discussion » Crohn's Polls » Can crohn's be treated without the use of medication?


View Poll Results: Do you think that crohn's can be treated without the use of medication?
yes, any severity 12 5.58%
yes, but depends on severity 71 33.02%
the use of minor medication is needed with a proper diet/natural therapy 37 17.21%
no, if you have crohn's you need some form of medication 95 44.19%
Voters: 215. You may not vote on this poll

 
12-29-2010, 11:41 PM   #31
aliciars
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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.
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Dx June 2010 - UC
Dx Crohns - Aug 2010
Currently: Azathioprine 150mg
Proctofoam (trying again?)

Supplements:
calcium+D, vit B, multi, aloe vera caplets & Fish oil

Tried:
Lialda 4.8 mg (Dr suspects allergic reation)
Colocort Enemas (increased bleeding)
Proctofoam (did nothing)
Prednisone (6 months did nothing but have me gain 30+ pounds...booo)
Humira weekly injections
Remicade (allergic reaction - hives)
Canasa suppository
01-11-2011, 10:29 AM   #32
Nytefyre
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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.
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05-14-2012, 10:15 AM   #33
CrohnsSurvivor
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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.
05-14-2012, 02:05 PM   #34
Rebecca85
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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.
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05-14-2012, 02:22 PM   #35
DustyKat
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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
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05-14-2012, 04:42 PM   #36
CrohnsSurvivor
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@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.
05-14-2012, 05:12 PM   #37
KWalker
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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.
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Remicade
Humira
Methotrexate (oral)
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Cipro
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06-24-2012, 09:18 AM   #38
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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!
06-24-2012, 10:50 AM   #39
kiny
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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.
06-24-2012, 11:06 AM   #40
kiny
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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.
06-24-2012, 11:31 AM   #41
KWalker
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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.
06-24-2012, 11:41 AM   #42
kiny
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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.
06-24-2012, 11:46 AM   #43
KWalker
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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.
06-24-2012, 11:58 AM   #44
kiny
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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.
06-24-2012, 02:29 PM   #45
archie
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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.
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Diagnosed Crohn's 2010
ileocecal resection 2010
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06-24-2012, 04:32 PM   #46
GutlessWonder86
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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.
06-24-2012, 07:59 PM   #47
ZM1019
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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. :\
07-24-2012, 08:39 PM   #48
BadGut
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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.
07-25-2012, 03:46 PM   #49
pb
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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.
07-25-2012, 04:42 PM   #50
DustyKat
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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

Last edited by DustyKat; 07-25-2012 at 05:28 PM. Reason: Leaving out the little words...again!
07-25-2012, 05:22 PM   #51
EthanPSU
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There's no way I could handle it without medication
07-25-2012, 05:48 PM   #52
Jennifer
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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/
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-25-2012, 05:59 PM   #53
KWalker
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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.
07-25-2012, 06:15 PM   #54
DustyKat
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Hey KW,

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

Dusty. xxx
07-25-2012, 06:53 PM   #55
KWalker
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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.
07-25-2012, 07:14 PM   #56
kiny
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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.

Last edited by kiny; 07-25-2012 at 07:35 PM.
07-25-2012, 08:33 PM   #57
pb
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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.
07-25-2012, 08:47 PM   #58
Jennifer
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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.
07-26-2012, 04:10 AM   #59
Gra
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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!)
__________________
ABOUT: male, 66 yo, DX CD Terminal Ileum, 1-May-2012
MEDS-PREVIOUS: Prednisone: 6 months, stopped 19 Dec 2012. Imuran: bad reaction.
Humira: 5th Oct 2012 till July 2013. Worked well for me.
SURGERY: 6 Aug 2013: Ileostomy, Temporary stoma.
29 Oct 2013: takedown.
23 Jan 2015: in remission - my goal is to stay there.

"What doesn't kill us, makes us stronger!"
07-26-2012, 07:42 AM   #60
Kip1
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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.
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[COLOR="Indigo"]Diagnosed with Crohn's in TI 2011
Bowel resection July 2012


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