Diet, is it really necessary?

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Hello everyone I’m Weggie 29 yrs. old and new in this forum. After 3 mos. of test and research I finally got a result and mild medication. I’m now taking Pentasa alone for 2 months, it’s a kinda mild so sometimes I still feel discomfort but better than before.

I’m new here so I read some of the topics and learned some diet. Is diet really necessary when we have this disease? So now I’m curios of what you all feel regarding food or appetite because I feel the same and eat the same. Is it maybe because the disease it new to me? And why having a diet? Is it because you don’t like to eat or you avoid something to take in which is not allowed to eat?

My doctor didn’t talk and advise me about diet or vitamins or supplements. So I really don’t have any idea if I have to go for some diet.
 
Weggie -

Many people find that certain foods bring on symptoms, or make symptoms worse. That is probably what you are referring to about 'diet'?...it isn't that people with crohns'/US are on diets - they have certain diets they need to follow to avoid exacerbating symptoms.

also - the types of diets can very GREATLY - for example right now I really don't have anything that I need to avoid - except I don't really eat nuts.....BUT - if I am having symptoms, there are a lot of foods that I will avoid (change my diet) to keep me feeling a bit better.....
 
You feel the same and eat the same - yet you are taking expensive chemicals to supplement your diet. So do you really feel the same, or is your body getting an artificial boost and help suppressing your symptoms by chemicals?

Taking medication, is like having a leak in a dam, and paying somebody to come and try to cement over it every day in a half assed way that needs to constantly be constantly re-done, instead of taking some time to stop the flow of water through the dam, get in their patch it properly, and then let the water try to break it down again through the forces of nature.

Your body is self healing, given the right conditions it can fix itself.

Doctors can't give diet advice. Doctors can prescribe and perform surgery. They might generally talk about diet but won't give on the record advice or forgo medications for dietary considerations.

Yes I really personally attacked the poster there didn't I?

Please clarify.
 
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Basically I am trying to figure out if I have to watch out what to take-in and what not and if it’s a “MUST”. Also how people feel about it, what are their experience, how they handle it. I still cannot believe that I have this, so I’m searching for hole if you know what I mean;-) because this is for me not easy and I don’t know how to handle that’s why I’m happy to find this site and learn how people deal with this.
- endibd, sorry it’s my typing error it should be NOR(red text) “My doctor didn’t talk and advise me about diet or vitamins or supplements. So I really don’t have any idea if I have to go for some diet”.

Thanks pasobuff and endibd for the response and explanation.
 
Hi Weggie
and welcome

Firstly remember that Crohns is inflammation and no amount of diet will change this. Food and diet can trigger symptoms such as diarrhea, gas, bloat or constipation but inflammation needs meds to get it under control. Pentasa is an amnio salicylate, it works as an aspirin, an anti inflammatrory, or a prophylactic, preventative to maintain.
Have a read thro the diet sections, for ex, the low residue diet will reduce symptoms of diarrhea and give your bowels a rest.
Keep a food journal, and document any foods that trigger symptoms, it's a process of elimination, trial and error, it all takes time.
I've noticed a huge difference cos I've cut out all red meat. I avoid cooked veg, mushy veg, that goes straight thro me! But I know what I shouldn't eat, so I'm doing ok, without symptoms.
Any questions, fire away!
lotsa luv
Joan xxx
 
When you're not in remission, finding what foods trigger symptoms (diarrhea, gas, constipation etc.) helps in reducing how often you experience unwanted symptoms. Its a process of elimination for everyone as stated because everyone is different. If a particular food or food group does not bother you during your flare, then there's really no reason to take it out of your diet.

I don't know what endibd was talking about with the dam and the medication, because medication is what keeps many of us alive as there is no cure for IBD and there is no diet out there that will cure it either. My GI said to stay away from foods that bring on symptoms while in a flare and slowly reintroduce them once you're back in remission.

Good luck! :D
 
Is diet really necessary when we have this disease? So now I’m curios of what you all feel regarding food or appetite because I feel the same and eat the same. Is it maybe because the disease it new to me?

I don't have answers for you really, but I am in the same boat. I was only diagnosed last year, and I can pretty much eat the same things before diagnosis and I do. I wonder if I am causing myself harm by not doing a low res diet or whatnot like many others. I have figured out a few no-no foods for me: salad, nuts, spicy foods, and deli meat. These have caused me to get an upset stomach and more trips to the bathroom than usual (luckily never D). So, I avoid these things, but that's about all I do as far as diet.

I, too, wonder if I haven't had to change my diet because I haven't had Crohn's for very long. I hope that is not the case and I can continue to enjoy my favorite foods for years to come. I LOVE to eat. Some people eat to live, but I live to eat. While, I am eating one meal, I am debating what to eat for the next. But I guess only time will tell...
 
You feel the same and eat the same - yet you are taking expensive chemicals to supplement your diet. So do you really feel the same, or is your body getting an artificial boost and help suppressing your symptoms by chemicals?

Taking medication, is like having a leak in a dam, and paying somebody to come and try to cement over it every day in a half assed way that needs to constantly be constantly re-done, instead of taking some time to stop the flow of water through the dam, get in their patch it properly, and then let the water try to break it down again through the forces of nature.

Your body is self healing, given the right conditions it can fix itself.

Doctors can't give diet advice. Doctors can prescribe and perform surgery. They might generally talk about diet but won't give on the record advice or forgo medications for dietary considerations.

Doctors need to follow guidelines, because they are a regulated profession. They have regulations to follow, and all are just mouthpieces for the same collective of knowledge that their particular regulatory body buys into.

endibd - I'm going out on a limb here but after reading your posts the last couple of days, I feel compelled.

One of things I value so much about this forum is the effort most members make to share their own experiences (successes, joys, frustrations & failures) while supporting others. I believe it is important to be kind in a world that is tough enough already. You clearly have strong opinions and while I love to hear what has worked for others, I have to say that I don't think it is right to tear members down as they try to figure out the best path for them. I'd ask you to consider that when adding to the threads.

Thanks.
 
Okay, Weggie, sorry to hijack your thread for a minute. My two cents on diet is like many others. It sure seems to vary from patient to patient. We found that following a low fiber low residue diet while Claire was having such a bad flare made her feel better. Since she's been in remission she has returned to a normal, healthy diet. You can imagine the irony of a 6 year old crying in the hospital because she couldn't have raw peppers and broccoli. :)

Others have found that following specific diets help them reduce their symptoms. Keeping a food diary is a great way to figure out what does and does not cause you discomfort.

I wish you the best! And welcome to the forum. This is really a great place for infomration and support.

Hugs,
 
I have to say that I don't think it is right to tear members down as they try to figure out the best path for them.

Example please of 'tearing down'.

If you mean saying what someone is saying isn't true is, then sorry I am not going to stop that.

I just responded to a thread, where the person started off their post with "Crohn's is inflammation and diet can't fix inflammation so diet makes no difference"

Diet DOES make a difference, there are foods that promote inflammation, and foods that can subside inflammation...and it's a total disservice to anyone who reads and believes that here.

Perhaps people can quickly google before making such blanket statements and spend 10 minutes doing their own research on the subject (before informing a bunch of sick people looking to make a change and help themselves) with inaccurate advice?
 
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No - actually you responded a thread where a newly diagnosed person was asking questions about the role of diet in their disease. What an opportunity to share your experience and knowledge in a positive way! And.....you wasted it. Perhaps you should reread from the beginning and take a look at how you choose to communicate.

Best of luck -
 
You feel the same and eat the same - yet you are taking expensive chemicals to supplement your diet. So do you really feel the same, or is your body getting an artificial boost and help suppressing your symptoms by chemicals?

Taking medication, is like having a leak in a dam, and paying somebody to come and try to cement over it every day in a half assed way that needs to constantly be constantly re-done, instead of taking some time to stop the flow of water through the dam, get in their patch it properly, and then let the water try to break it down again through the forces of nature.

Your body is self healing, given the right conditions it can fix itself.

Doctors can't give diet advice. Doctors can prescribe and perform surgery. They might generally talk about diet but won't give on the record advice or forgo medications for dietary considerations.

Doctors need to follow guidelines, because they are a regulated profession. They have regulations to follow, and all are just mouthpieces for the same collective of knowledge that their particular regulatory body buys into.

I am glad to see that you are enjoying success with a med-free approach to controlling your disease. I tend to agree that, when possible, this is the optimal place to be, at least for me. I am currently off of all of my meds and doing well by controlling my diet. However, I would be careful to suggest that this is the best approach for everyone. I think the ultimate goal in dealing with a chronic illness is to find the right combination of treatments (diet, exercise, medication, meditation...whatever is right for you) that will keep you in the best state both physically and mentally. As much as I hate taking ANY medication, I would be lying if I were to say that there were not times when I needed it (Flagyl probably saved my life).

And BTW Weggie, here is my two cents on the diet thing...

My body knew what foods I could and couldn't handle long before I was ever diagnosed with Crohn's . I have read about a bunch of different diet options and the bottom line for me is still the same. I try to eat foods that are naturally high in nutrients and I avoid foods that leave me feeling bad. Period.
 
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After 3 mos. of test and research I finally got a result and mild medication. I’m now taking Pentasa alone for 2 months, it’s a kinda mild so sometimes I still feel discomfort but better than before.

I’m new here so I read some of the topics and learned some diet. Is diet really necessary when we have this disease? So now I’m curios of what you all feel regarding food or appetite because I feel the same and eat the same. Is it maybe because the disease it new to me? And why having a diet? Is it because you don’t like to eat or you avoid something to take in which is not allowed to eat?

My doctor didn’t talk and advise me about diet or vitamins or supplements. So I really don’t have any idea if I have to go for some diet.

You feel the same and eat the same - yet you are taking expensive chemicals to supplement your diet. So do you really feel the same, or is your body getting an artificial boost and help suppressing your symptoms by chemicals?

Taking medication, is like having a leak in a dam, and paying somebody to come and try to cement over it every day in a half assed way that needs to constantly be constantly re-done, instead of taking some time to stop the flow of water through the dam, get in their patch it properly, and then let the water try to break it down again through the forces of nature.

Your body is self healing, given the right conditions it can fix itself.

Doctors can't give diet advice. Doctors can prescribe and perform surgery. They might generally talk about diet but won't give on the record advice or forgo medications for dietary considerations.

No - actually you responded a thread where a newly diagnosed person was asking questions about the role of diet in their disease. What an opportunity to share your experience and knowledge in a positive way! And.....you wasted it.
How did I waste it? I answered their questions and asked a question, provided an analogy and made a statement about Doctors and what they are and aren't allowed to say, explained why, again, to respond to the statement about why their doctor didn't bring up diet with them.
 
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endibd

I think you're referring to me?
Can you honestly hold your hands up and tell me that carrot juice would've healed me and saved my life last year?
I was so close to death, it was the most horrendous time of my life!
The docs told me I nearly died if I'd waited just another hour before phoning an ambulance!
Metronidazole and Prednisolone saved my life, without medical intervention my children would be without a mum now.
I'm all for a healthy diet and juicing, I've told you that, but I wouldn't ever tell the ill people on here to go without meds, they are a life saver!
Oh, and by the way, Crohn's IS inflammation, and no diet in the whole bloody world will heal inflammation when it strikes, as in knocking at Death's door inflammation, infection, sepsis and peritonitis, FACT!
Go Easy Tiger
Peace
 
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I think the main point to realise is that eating right may help you feel better overall (but its not going to jump start a Crohn's flare). If you ate fast food all the time and processed this and canned that, then you aren't getting the nutrients your body needs (not to mention injesting tons of stuff that your body doesn't need) and can affect your body in a negative way. This is just common sense though. There's no reason to follow any particular mainstream diet or fast for so many days or cut out certain foods/food groups just because Joe Shmoe on Psycho TV says so. Everyone is affected by food (whether they have IBD or not), their disease, and medication differently so you have to follow trial and error.

@endibd, I agree that your posts sounded negative. There weren't really any attacks but perhaps better wording may avoid misunderstandings in the future. If you're doing well by being off medication then that's awesome, it really is but we are not doctors on this forum and will never promote dealing with this disease on diet alone. Changing diet, fine, great, most people should but diet alone is not a cure and the deaths of many who have gone without medication I feel are proof of that.
 
I think diet can make a difference. It has to. How can something that is in constant contact with your inflamed bowel not make a difference in how you feel? Its like saying it doesnt matter what you put on a wound as it healing.

This being said, finding what works can be difficult and for some people these diets can be restricting and difficult to deal with as the disease itself.

I have been on both places, and when I came out of my non medicated remission, I tried to reverse it with diet alone, and I failed horribly. Its okay to try but when it stops helping you need to get help before you end up getting an emergency colostomy.

It was really hard for me to admit I may need meds after a long med free remission. So hard I almost lost my colon over it.

I will try to go med free someday again, but after what I went through I just dont have it in me to try another diet right now, and I choose meds.
 
Hi Weggie. I think everyone has pretty much covered the diet question but figured I'd chime in too. :) I use the word "diet" to mean "what I eat," not to mean a special diet. I'm currently trying to improve my diet, what I eat, to support myself better nutritionally since I've been eating terribly for years.

If you can eat normally consider yourself very fortunate. :) I remember the days when I could eat anything....sigh.....:D
 
I will try to go med free someday again, but after what I went through I just dont have it in me to try another diet right now, and I choose meds.

My sister has gone med free for years. Maybe more than a decade, I don't know. Med free would be ideal and I think its great that some people are able to do it but I think one of the main problems with it is that people don't see their GI often enough simply because their symptoms aren't that bad or they come and go and don't bother them that much. They also don't get regular blood work done or any scopes done to make sure that everything is running smoothly. You can't see what's going on inside and should never wait until puss is squirting out the side of your abdomen. My sister has bleeding from time to time. That's not remission. To me, that's denial. Even though I'm in remission, I still see my GI every year and get blood work done every month. My point here I guess is that med free is great, but never forget that its a chronic illness and still needs to be treated as such by staying on top of things (not aimed at you in general, just at anyone who is entertaining the idea of being med free and thinking that that means doctor free too).
 
it's all trial and error in finding what works best for you. Try to give everything an honest shot, don't give up too early and try your best not to get frustrated. Don't expect miracles and when you try something new (diet, meds, excercise etc) don't expect to see results right away, you gotta give it time. That's my only advise. I've seen so many kind of therapies/diets/meds help people and an equal amount not do anything. there is no shortage of remedies, meds, diets as you will see on this website.
 
Is diet really necessary when we have this disease?

For me yes.

Things like dairy, wheat, meat, beer, wine, will give me the most terrible pain.

Years ago I could get away with it, but not now.

My doctor didn’t talk and advise me about diet or vitamins or supplements.

Doctors rarely or never do. They will normally say that diet and supplements will have no effect. A naturopath can advise you on these instead.

I am under the care of a naturopath and on supplements. Doing really well.
 
inflammation needs meds to get it under control.

Not in all cases.

Certainly not in my case anyway.

The meds made me very ill, as I was on high dosages. Every time the doc tried to lower my dosage, I flared up again.

I am now reducing the inflammation with supplements and following a strict diet.

It is early days yet, but I am doing really well so far.
 
It depends on the extent of the inflammation. Allowing inflammation to prolong puts you at risk of getting scar tissue which cannot be repaired and can lead to other complications.

Miss Spencer, why couldn't you take the supplements and go on the diet while taking lower doses of the medication? Surely without medication you'd flare right back up as you said you did when they lowered the dose. Its usually the combination of different treatments/medication that gets a flare under control.
 
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Can you honestly hold your hands up and tell me that carrot juice would've healed me and saved my life last year? I was so close to death, it was the most horrendous time of my life!

Well yes, I can honestly hold my hand up and say that carrot juice saved my life.

I was also close to death and it was a horrendous time of my life too.

A change of diet that included juicing literally brought me back from the brink.

But everyone is different, so why argue? We should all try to support, honour and respect each other’s choices – even if we don’t agree with them.

I fully understand and respect other people’s decisions to take medication. I don't agree with taking medication for myself personally, and I no longer see the doctor, but that is my personal choice.

You have to do what feels right to you and you have to find your own path.
 
Miss Spencer, why couldn't you take the supplements and go on the diet while taking lower doses of the medication?

Because I don’t want to.

After my last hideous experience with medication side effects in 2005, I never want to take them again. Personal choice.

I am currently under control with diet and supplements. The results so far have been been nothing short of miraculous.

It is my personal choice based on my needs, so I am definitely not suggesting anyone else try this. Years ago I decided to take total full responsibility for my own health, and it is working so far. And if I am fully committed in my endeavours, I fully expect it to carry on working for me.

You may not agree with my choices and you may think I am an idiot for choosing them – but please respect them. Just as I respect yours.
 
You may not agree with my choices and you may think I am an idiot for choosing them – but please respect them. Just as I respect yours.

I wasn't attacking you. It was a simple question. I was just curious.

There are many different types of medications out there and not all of them have horrible side effects and many people don't experience any or many of them (for instance, I take 6MP and have no side effects from it). I'm now curious if your diet were to stop working if you would consider trying medication again?

The only issue I have is that you said you no longer go to the doctor. I think that if your form of treatment does wind up working for you, that it should be documented so it could help others who suffer from IBD in the future. We're always looking for a cure and I think if you're successful, you'd be doing us all a great service by seeing your GI on a regular basis and getting blood work done to help scientifically prove that the disease can be managed on diet alone.

I wish you luck.

If I sounded harsh in any way, its only because I get to see my sister waste her life because she stopped taking her medication and she's allowing the disease to run freely unchecked by not even seeing a GI to see how bad things really are (she has bleeding off and on and pain). I worry for her and anyone else who follows a similar path.
 
. I'm now curious if your diet were to stop working if you would consider trying medication again

No, I would not.

I would seek out another more natural alternative.

Never say never, but I just don’t want to take medication full stop.

I don't take medication for anything these days, I always seek out natural methods and they have all worked so far.
 
I'm not knocking you neither Miss Spencer and my original post was in answer to endibd, not you.
but with regards to the carrot juice saving my life, no it wouldn't have
I was lying in hospital being pumped with morpheine, IV hydrocortisone and Metronidazole and I didnt wake up for 3 days, with my worried family around my bedside, my kids crying, my partner distraught and so on

I wish you all the very best but juice wouldn't have healed my sepsis and peritonitis that week in hospital.
I pick my juicer up tonight and I'm gonna try the carrot juice to see if it will help with diarrhea.
I am not arguing neither, not something I wish to get embroiled with, I do respect other's choices, and I'm defo supportive!
I still believe what I get told by my gastro team, that severe inflammation will need some degree of meds to get it under control. Left to it's own devices, inflammation can/may spiral out of control.

Peace
 
Reading through this thread, there is some really good discussion going on.....

But, it brings up a question (at least to me).......

With all the talk of medication vs. no medication vs. natural 'treatment'..... isn't the act of using something to help control or heal symptoms/disease actually a type of 'medication'?.....it brings up the bigger picture of synthetic medication vs. NATURAL medication.....for isn't that where the synthetics/man made medications came from? .....

So - if it is documented that a natural product (such as carrot juice) is able to help bring a disease under control - isn't it possible that it can/may become a 'medication'
noun
1. the use or application of medicine.
2. a medicinal substance; medicament.

–adjective
1. of, pertaining to, or having the properties of a medicine; curative; remedial: medicinal properties; medicinal substances.

Now, I'm not trying to cause any problems here - just bringing up some additional thoughts for people to ponder.......
 
Yes Lisa
If carrot juice reduces my diarrhea then I can safely call it my diarrhea meds!
Thing is, I don't have any inflammation at the mo, not anywhere,
I have occasional d tho, so hoping carrot juice might help.
It's a good discussion, yeah, hoping it will remain civil.
xxx
 
Thanks guys for the sharing your ideas and support. OOoohhh…I love this forum. This is for me how experienced people talks!!!! I’m sure I will learn a lot here.

I really appreciate your answers it gives me some overview what diet means here and if I also should do it. I thought that pain will just appear/attacks whenever it wants? So it’s also connected to which food we’ve take-in? And to watch out what you’ve eat, really helps….until now I didn’t watch out what I’ve eaten that made my stomach upset I can eat them without fainting or throwing it out but I really notice that after severe diarrhea for bout 2 or 3 weeks then the symptoms starts. It is for me yeah symptoms is there and I cannot do anything about it because it is in our genes(hereditary), pain comes and it goes. From now on will watch out what I’ve eaten that made my stomach upset.
 
Hi Weggie! Welcome to the Forum! Having read some of the responses on here it seems everyone has chipped in, but I wanted to have my say as well, since diet is a huge part of my life.

The diet that I'm on at present is 028 Elemental Extra Cartons. I can't eat any thing at all without horrific and distressing gastro-intestinal symptoms. :(

I have to admit, I really don't like being on the 028 Elemental extra cartons. I can't wait to be able to nourish my body with proper food again, instead of man made, artificial drinks. But I am grateful to the diet because it has saved my life, its about the only thing I can tolerate, although I do find I get very bloated and constipated on the drinks, which is very uncomfortable. But without the drinks, I would have just starved.

The taste of the drinks is pretty ghastly at first, but you get used to it!

I must confess I miss my Fish, Chips, Mushy peas and curry sauce though!

Big Hugs
:hug:
xxx
 
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it's all trial and error in finding what works best for you. Try to give everything an honest shot, don't give up too early and try your best not to get frustrated. Don't expect miracles and when you try something new (diet, meds, excercise etc) don't expect to see results right away, you gotta give it time. That's my only advise. I've seen so many kind of therapies/diets/meds help people and an equal amount not do anything. there is no shortage of remedies, meds, diets as you will see on this website.

Thank you for posting this! I can see this thread getting heated. As per in the past, everyone is intitled to their own opinion, and for Miss Spencer,I am so glad you found what works for you. I also have tried the natural path, nothing, then I went to a dietician for digestive disorders and she knew more than the specialist did. I know most doctors dont take nutrition heavily in their medical practices, learning meds and diseases is what hey learn. I had my gp almost dropped me as a patient because I went to a naturalpathic doctor, but since moved from that area. Everyone has choices to help themselves, what works for you , may not work for me. The disease is from mild to severe and also is in different areas, and since I have tried everything under the sun, I have found some things good. I don't suggest to anyone, unless they ask. NO one is right or wrong here. The important thing is to help each other and support one another. Do what is best for you. Eating well for everyone is important!
 
:biggrin:
With all the talk of medication vs. no medication vs. natural 'treatment'..... isn't the act of using something to help control or heal symptoms/disease actually a type of 'medication'?......


:biggrin: Yes, I suppose it is!

Depends on your particular definition I suppose. And I am sure everyone has a different views on the term.

My definition of “medication” is anything from Big Pharm given as a prescription through your doctor. It is generally something that will treat the symptom but not address the cause. It is something with a potentially nasty side effect (i.e.) taking a pill to reduce the inflammation in Ulcerative Colitis but being told by your doctor to stay out of the sun because one of the side effects was skin cancer, and the other side effect was liver failure.

Supplements are still manmade and some of them have side effects, but they are not as severe as the medication. Especially if you have a trained and experienced naturopath prescribing them.

Carrots are from nature, so can’t really be classed as medication, although you could call them nature herbal medicine.

You may have opened a can of worms here! :D
 
028 Elemental Extra Cartons.

Hello

I have never heard of these.

What is in them?

I understand about you missing food. I had a craving for chicken & chips yesterday. The only thing that put me off was remembering the awful pain I had last time I ate meat. That would be enough to put anyone off.
 
It is generally something that will treat the symptom but not address the cause.

No that would be something like a cough drop. It'll help you with you cough but doesn't get rid of the virus that causes the cough.

Autoimmune suppressants (like 6MP) aid in suppressing the immune system to prevent future flares due to an overactive immune system. Medications like Asacol/Mesalamine work by stopping the body from producing a certain substance that may cause pain or inflammation. This is preventative medicine. Prednisone, a steroid, works by replacing steroids that are produced naturally by the body for patients with low levels of corticosteroids and by reducing inflammation and by changing the way the immune system works.

There is no cure for Crohn's. Not through man made medication and not through anything nature has to offer naturally. Natural remedies may also help with symptoms but will never cure what lies within our DNA. The success rate (meaning people don't need a stoma or aren't dying from it) of people taking medication for IBD is much higher than those who go without.

I wont knock your natural remedies but please do not knock man made medication by saying "BIG Pharm" like there's some sort of conspiracy.
 
please do not knock man made medication by saying "BIG Pharm" like there's some sort of conspiracy.

I am not knocking them per se; it is just how I feel about them when trying to explain my personal definition of medication. To me the words “Big Pharm” is a blanket statement to cover medication prescribed from the doctor. It has nothing to do with any conspiracy.
 

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