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The worst advice

What is the worst advice you have gotten from someone well meaning about your IBD?

I had two gems last night from my mom:
-stop thinking about it so much
-(re:Colon pain) try tums
 
If I just cut out all processed food I would be better
-by a person getting a Remicade infusion at the same time as me, he claimed he hadn't had Remicade in 6 months and only flared because he visited someone in the hospital and ate hospital food
 
My uncle told my parents I was sick because of gluten and processed food... While i was in the hospital on the verge of having my colon taken out.

Also heard it's because of being stressed out. People are great. LOL.
 
As much as I believe in diet you have to be smart about it. The worst advice I received was to eat a salad while flaring. Baaaaaaad idea.
 
I've also been given terrible diet advice: cut out sugar/dairy/gluten/processed food/non-organic food/all of the above. I can't live off water and air! And when I cut out all those things it made my health worse.

Plus this:

If you would eat more, you would feel better.
Except I heard it from a doctor.
 
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I've been advised to have my colon removed by people who don't know the difference between the small intestine and large intestine, which is pretty critical anyway but particularly because I have disease in the small bowel and a (touch wood) completely healthy normal colon...so yeah :yfaint:

Obviously not advice I could follow through on on my own and no surgeon would act on it but it's still kind of galling that people are telling me that I could live a 'normal' healthy life if only I'd do what it takes.
 
What is the worst advice you have gotten from someone well meaning about your IBD?

I had two gems last night from my mom:
-stop thinking about it so much
-(re:Colon pain) try tums
Actually I think stop thinking about it so much is good advice (just very difficult to execute).

I had to smile at try tums though!

I got an Its all in your head, you should see the psychiatrist. In theory that was someone meaning well but you can all imagine how that made me feel.

:mad2::yfrown::voodoo::(:ymad::yrolleyes::angry-banghead::cry:

Maybe not quite in that order.
 
"Cut out sugar that'll stop feeding the bad bacteria... They love sugar!"

If only it was caused by bacteria, buddy
 
While pregnant I was seeing maternal fetal medicine for growth ultrasounds to make sure my little girl was lnt suffering from my absorption issues

From the ultrasound tech "I have a friend who went completely raw vegan diet and she is cured of her crohns, have you tried that?"

From my well meaning dad
"Drink 1 cup of juiced carrots a day you'll be so much better" (he swarms it saved him from needing an appendectomy)
 
"You're depressed. We'll start you on an antidepressant. You'll start to see the world differently and you'll find your physical issues will go away."
 
"You're depressed. We'll start you on an antidepressant. You'll start to see the world differently and you'll find your physical issues will go away."
I've lost count our the number of times something along these lines has been said to me.
 
My uncle told my parents I was sick because of gluten and processed food... While i was in the hospital on the verge of having my colon taken out.

Also heard it's because of being stressed out. People are great. LOL.
Believe it or not, your uncle may be onto something.

Have you had any work up for Celiac disease or allergies? Even if you don't have celiac disease but have some of the IgG, or IgA antibodies show up high, there could be a celiac sensitivity issue and/or another food sensitivity issue. Gluten is notorious for causing inflammation in the body and if left unchecked can lead to a host of health issues including, but not limited to, thyroid issues, GERD and other GI issues.

Corn, Soy, and dairy products often cause GI and other health issues. The majority of Corn and soy in the United States are GMO (Genetically Modified Organisms). Pasteurized and Homogenized dairy products have all the good properties taken out. Synthetic vitamins are then put into the product. If a person has unknown genetic mutations that cause a problem with cell methylation, they can have vitamin/mineral deficiencies as well as toxicity because their body cannot process synthetic vitamins/minerals, only metholated or activated vitamins/minerals.

An experienced functional medicine doctor can help to get to the root cause of underlying medical issues. They can also run extensive lab work to determine vitamin, mineral, pre-biotic & pro-biotic levels as well as toxin, candida, and bacteria build up in the body.

Conventional doctors throw medicines at symptoms without getting to the root cause of the symptoms.

My functional medicine doctor uncovered Gluten Sensitivity as well MTHFR gene mutation as a major contributor to my health issues. I already knew I had a corn allergy so I was avoiding corn as much as possible. We will be checking for further gene mutations and food sensitivities. I am now Gluten Free and working towards being soy, and dairy free. I can have dairy that has NOT been pasteurized or homogenized (I have to cross over state lines to purchase since it's sale is prohibited in my state.) I use unprocessed honey, agave, xylotol (not sure of the spelling) and one other type of sweetener. I was very overwhelmed at first as to what I could eat. But with support from family, friends and doctors, I am feeling more comfortable with the new diet. Basically it's like eating the Paleo Diet. Processed foods, even if gluten free, often have other additives that make us ill. With Gluten Free processed food products, I found I was not feeling well. My doc said it is because they take out the gluten and put a bunch of other stuff that's not good for you back in. They will also put lots of sugar in them. You really have to read labels. I find that the products that have the least amount of ingredients as well as ingredients I can pronounce, are ones I can tolerate. I found Kind nutrient bars delicious, filling and satisfying. For me, Larabar's do not settle well and make me feel ill. They also seem to have more calories.

Eating natural nuts, fruits and vegetables and when possible (notice I said when possible) grass feed beef & bison, wild caught fish, free range poultry makes me feel a whole lot better. I am discovering a whole new food world and loving it. I try one new fruit, vegetable, nut or meat once a week.

My daughter makes green smoothies with all sorts of things in them. They are delicious and full of natural vitamins, minerals, pre-biotics, and pro-biotics. She uses foods such as chia seeds, flax seeds, almond milk, chocolate almond milk, coconut milk, kiwi, strawberries, nuts, blue berries, bananas, almond butter, avocado's, baby spinach and other baby green leaf vegetables, dark chocolate, cucumbers and the list goes on and on and on.

As you can see by now there is an endless supply of natural foods we can eat. We didn't grow up on them so it's new to us. But think how healthy our ancestors were before processed foods became part of the diet.

One thing you can do is look for an old cookbook. Those don't usually have you using processed foods in your meal making.

Hope this helps. Fell free to ask me any questions.
 
Now, I agree that processed foods are not great. But I have to say our ancestors were also more likely to die of the flu... so I don't think they're health is something we should strive for unless we all wanna die in our 40s.
 
I've lost count our the number of times something along these lines has been said to me.
Hmmm... Some doctors are just full of themselves. I've been told the same thing. My functional medicine doc ran a bunch of test and found genetic issues, gluten issues and on and on.
 
"Cut out sugar that'll stop feeding the bad bacteria... They love sugar!"

If only it was caused by bacteria, buddy
I love my sweets! :soledance: No candida here. One possible bacteria that is currently being treated with antibiotics and pro-biotics. I try not to over do it on the sweets but I will not cut them out completely! :ywow:
 
Now, I agree that processed foods are not great. But I have to say our ancestors were also more likely to die of the flu... so I don't think they're health is something we should strive for unless we all wanna die in our 40s.
Actually that had more to do with lack of modern medicine. Most people died of infections in a time where we didn't have antibiotics or anti virals. Also most people died young because of war, famine, etc.
 
I too have gotten the "it's just stress, take antidepressants" comments.

Another favorite is "stop obsessing about it, you need to focus on other things".

Oh, and my mother the other day: "you should try acupuncture, it cures everything"
 
I too have gotten the "it's just stress, take antidepressants" comments.

Another favorite is "stop obsessing about it, you need to focus on other things".

Oh, and my mother the other day: "you should try acupuncture, it cures everything"
Clearly they don't get it and they don't suffer w/a chronic illness.
 
I too have gotten the "it's just stress, take antidepressants" comments.

Another favorite is "stop obsessing about it, you need to focus on other things".

Oh, and my mother the other day: "you should try acupuncture, it cures everything"
Have you tried it? Has anyone tried it?
 
Actually that had more to do with lack of modern medicine. Most people died of infections in a time where we didn't have antibiotics or anti virals. Also most people died young because of war, famine, etc.
Can you provide some sources of this information? Also, when you say our ancestors were healthier, how far back in history are you talking about?

(And isn't famine a really unhealthy diet?)
 
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A consultant gastroenterologist told me not, under any circumstances, to get an ileostomy, and that surgery is always wrong because it is "unnatural". He said I'd already irreparably harmed my body with the surgeries I'd already had at that point.

I've had an ileostomy for a year and a half now and my only regret is that I didn't get one a lot sooner.
 
Lets see

dietician - "you should eat more nuts like walnuts"
I'm on a Ceres MCT diet, can't really eat nuts full stop:ybiggrin:

well meaning friend - "cut out sugar and only eat homemade brown bread. thats what i give the kids"
now, i've had to change a few of her kids diapers and i testify that whatever is in that brown bread is making her kid's digestive system work waaaay overtime.:stinks:
i will be happy when they start going to birthday parties with deep fried chips and chicken nuggets, cakes with frosting and skittles for food.:dance:

well meaning father - "its like you don't eat anything, thats why you're losing weight"
<sigh> a tiny bit more complicated than that my dear daddy........

another friend - "vegan all the way, that'll fix everything"
what? my life isn't difficult enough?!!:ybatty:
 
Me: I don't want to end up in the hospital again.
Husband: Then stop going to the er.

Grrrr. If only he knew. He will never live that one down!
 
"You should read Grain Brain, it'll fix you, you're probably just sensitive to gluten"

Nope, worst I ever felt was on Paleo/AIP.
 
Cut out the stress. Okay, I'll get rid of the Alzheimer's husband, the diabetic cat, the Crohn's and you, maybe you first, since I do love love the first 2 and am doing my best with the other one.
 
Yeah, but she made it sound like a walk in the park. Also, her neighbour's babysitter's second cousin twice removed has Crohn's, and you just have to watch your diet.
 
Yes, getting fifth or sixth hand advice is so useful!

But I have to take extra exception to the "if it gets worse they can just cut the bad parts out" comment because it's definitely not a walk in the park so I'm pretty sure "just" is not a word that should have been in there and also even if it was a walk in the park, this particular walk in the park can end in death...you know once you've cut out so much small bowel that you can't live any more without serious interventions, like permanent TPN which has serious risks and limitations or a small bowel transplant with a 50% 5 year survival rate.

So my answer to that would be they can't "just" do that and also no, there is a point at which that no longer works.
 
Yes, getting fifth or sixth hand advice is so useful!

But I have to take extra exception to the "if it gets worse they can just cut the bad parts out" comment because it's definitely not a walk in the park so I'm pretty sure "just" is not a word that should have been in there and also even if it was a walk in the park, this particular walk in the park can end in death...you know once you've cut out so much small bowel that you can't live any more without serious interventions, like permanent TPN which has serious risks and limitations or a small bowel transplant with a 50% 5 year survival rate.

So my answer to that would be they can't "just" do that and also no, there is a point at which that no longer works.
I can never understand why some people (often media as well) say conventional medicine is all about quick fixes, that people expect to just pop a pill (leading to poor health in the long run), rather than put the hard work into following a healthy diet and living a healthy lifestyle.

Anyone who thinks taking pills is easy has obviously never had to deal with the side effects of prednisone, and I fail to see how conventional medicine appeals because it seems easy when surgery is such a big part of conventional medicine.

Plus if there really was a quick-fix pill, I'd see nothing morally wrong with taking it.
 
I think it's easier for people to write off people with health problems as lazy or undisciplined, because it allows them to cope with their uncomfortable feelings about the subject.
 
^^^ This! Because people without much experience of illness don't want to face up to the idea that not everything can be cured. And they certainly don't want to think it could happen to them.
 
I can never understand why some people (often media as well) say conventional medicine is all about quick fixes, that people expect to just pop a pill (leading to poor health in the long run), rather than put the hard work into following a healthy diet and living a healthy lifestyle.

Anyone who thinks taking pills is easy has obviously never had to deal with the side effects of prednisone, and I fail to see how conventional medicine appeals because it seems easy when surgery is such a big part of conventional medicine.

Plus if there really was a quick-fix pill, I'd see nothing morally wrong with taking it.
Absolutely! There'd be nothing wrong with that! If only... Maybe one day?

And agreed, I'm really not seeing quick fixes in any of the routes that we take - whether conventional or alternative. I'm not saying no one improves or benefits on any of these treatments or combinations but what I see with those of us with Crohn's is a lot people working very hard to be as healthy as they can be. Whether we're taking meds and putting up with the side effects and coping with the risks, or overhauling our diets, researching supplements or drinking only liquid diets, making tough choices regarding surgery and accepting the potential lifelong effects of that - and so often dealing with symptoms regardless of what route we choose.

I mean if only we were lazy and undisciplined because after a while of living with Crohn's I'm sure we'd soon shape up if that was the alternative lol

I feel like people with incurable illnesses seem to cause affront in a number of ways - for those who believe in alternative medicine, we obviously don't believe or at least they refuse to believe that we committed enough to try it properly, for people who believe a healthy lifestyle cures all we're obviously ignorant and have just been eating the wrong foods and causing ourselves all kinds of stress and for those who are in a bit of denial about the limits of modern medicine we just need to get on and "just" do whatever our doctors tell us to (because it probably makes them feel insecure and vulnerable that we're still there unfixed).

Basically we're a pretty inconvenient reminder of things people would rather not think about!

Just to reiterate how ridiculous, I mean helpful, uh no I mean ridiculous these suggestions can be I would like to put forward the most recent "well-meaning" suggestion I have received to restore me to good health. It went something like this "My daughter has a friend with Crohn's who started having two alcoholic drinks a day and now feels 100% better."

I fear the subtext is this: How can you not have found a cure to your illness in the last 19 years? Other people have found miracle cures, including the lady who "eats fresh air" (that was a real suggestion made to me once). How have you not been trying hard enough to fix yourself? And btw after nearly 20 years this looks like malingering. Also wouldn't you be a lot more fun to socialize with if you were on the two-alcoholic-drinks-a-day-miracle-cure* than your strictly no alchohol (because it makes you really sick but I don't believe you) diet? Really wouldn't you?

*not a real cure

*Ends vent*
 
I have had this discussion on many occasions, but today all I want to say is what the heck is eating fresh air?
 
Yeah, that's what the rest of us call not eating at all. Problem is it's not compatible with life when done for very long...as many of us have found out. But "eating fresh air" was how some crazy woman described her solution to her health problems and this was actually published in a (terrible tabloid) newspaper and suggested to me by a "helpful" relative as a way to deal with the pain I experienced on eating. It sounds too crazy to be true...I'm looking for the article now but it was years ago still I turned up something similar here. Yes, these people are out there and they are absolutely delusional. This might possibly be the worst piece of advice I ever received...if it weren't so silly. Then again, perhaps I just wasn't trying hard enough? ;)
 
Basically we're a pretty inconvenient reminder of things people would rather not think about!
But then people with Crohn's can act the same way towards people with more serious health problems.
 
If people think popping pills with Crohn's is easy, they can take mine. Between the supplements and the meds, it's like a pill factory around here and sometimes, I am sure they upset my stomach.

We've certainly gotten a bunch of bad advice. We each have to walk our own road and what to others may seem small, isn't to the one going through it. Not that Crohn's is ever small.
 
UnXmas, that's why I said people with incurable illnesses (not specifically Crohn's) because I certainly hope that I'm empathetic to anyone who deals with any illness (and I just said incurable because I think that is what really bothers these people who give us this sort of advice, that it goes on and on, and we're still hanging around being ill!)

And sure people with Crohn's can act badly too, because we're just a subset of human beings, but I do think that in general once we have lived with this for a while that we do have an appreciation that it is often not as simple as "just" popping that pill or having that surgery or following that diet.
 
"Surely all of these dietary changes are going to make you sick!" Gee, thanks Mom.

"You wouldn't be nauseated all the time if you would eat something greasy, like a cheeseburger or some fried chicken." Seriously? Thanks Dad!

"You should try a colon cleanse- they do miracles!" from a dear but clueless friend.

And my fave, "I think your doctor must be a money hungry quack- he keeps doing all of these tests and scopes and they keep finding more problems and writing prescriptions for crazy expensive meds! I swear, they are causing it instead of making it better!" Love you too sweetheart!
 
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Anyone else find that friends/family still try to comfort you with food, and it just gets so awkward?

My mother: "I've made pie, why don't you come over and have some?"

Me: "If I eat pie I'll be crying in the fetal position on the bathroom floor within 30 minutes."


My grandmother: "Why don't you come over for pastries and coffee, we can talk, it'll make you feel better!"

Me: "I can't really eat pastries and coffee makes me sick but I can just come over, I don't have to eat or anything."

My grandmother: "You can't not eat! I'll put out some bisquits, and you can have milk with your coffee so it's not so strong!"

It's taking a toll on what would otherwise be helpful distraction/a nice social break from my usually pretty solitary existance these days. But there always has to be food! People are really not particularly understanding about someone not wanting to/being able to eat the things they expect or want you to eat.
 
oh yeah. Or someone wants you to come for dinner and you tell them there's a lot of stuff you can't eat and they back peddle and don't want to know what you can eat. I'm really glad my very dear mother-in-law is gone, she would be so hurt I couldn't eat her pizza or a lot of her other wonderful food. She was a real my food is my love for you person and it was soooo good.
 
hmmm, i recently stopped talking to 'the' others about it all together.

Honestly, their opinions do not affect me any longer.

Free your mind, smile and nod, they can't help their ignorance ~ delving into it only fuels it. Seek knowledge and educate yourself.
 
We have a friend who apparently "had" Crohns a few years ago and now it's gone?

"He had Crohns 4 years ago. He shot himself up with Humira for a few months and now he is cured. Why don't you do that?"

If only it was that simple...
 
Not advice in this case, an assumption that bothered me. "Seems like every Crohn's person I've ever met has been super upbeat and never complains about their disease."

Someone recently said this to me just before meeting my son. I'm glad my son didn't hear it, he would have felt pressure to act happy, which he is not.
 
Not advice in this case, an assumption that bothered me. "Seems like every Crohn's person I've ever met has been super upbeat and never complains about their disease."

Someone recently said this to me just before meeting my son. I'm glad my son didn't hear it, he would have felt pressure to act happy, which he is not.
I find it absurd that people pressure those with difficult health problems/chronic illness to be "happy". It's like we're supposed to be happier than the average person and just inherently more resilient and upbeat.

I mean we all deal with our health problems because we don't have a choice, but we shouldn't have to be superhuman and not have negative feelings about it...
 
I find it absurd that people pressure those with difficult health problems/chronic illness to be "happy". It's like we're supposed to be happier than the average person and just inherently more resilient and upbeat.

I mean we all deal with our health problems because we don't have a choice, but we shouldn't have to be superhuman and not have negative feelings about it...
And the "Well, at least it's not ____." is equally as insulting.
 
I too have gotten 'take ibuprofen for pain' from the nurse as I was signing my discharge papers from a week long stint in the hospital and a small bowel obstruction. Yeah, sure, okay...that's a great idea. :ywow:

And my traveling nurse that came and did my humira demonstration when I first started told me (and I quote): "Are you sure you have Crohn's? Most of my crohn's patients are extremely skinny and you have plenty of belly on you. At least you have plenty of areas to inject the Humira." I had just lost 10 pounds from an obstruction and was at a healthy weight for me (but I have had two kids and have 'extra' belly left over). I seriously about kicked her right out of my house. :ymad:
 
And my traveling nurse that came and did my humira demonstration when I first started told me (and I quote): "Are you sure you have Crohn's? Most of my crohn's patients are extremely skinny and you have plenty of belly on you. At least you have plenty of areas to inject the Humira." I had just lost 10 pounds from an obstruction and was at a healthy weight for me (but I have had two kids and have 'extra' belly left over). I seriously about kicked her right out of my house. :ymad:
That's so awful...and IMO dangerous too because we all have to take our disease seriously so it can be very damaging to make people feel like they are healthier than other Crohn's patients, which I have felt is often the inference when we aren't skinny. Or as this nurse said that you essentially don't even have Crohn's!!! I mean as if that's all there is to it :ywow:

Yep, my surgeon's nurse who was present during an exam started trying to tell me how bad another patient had had Crohn's and how she hadn't been able to eat Christmas dinner for years etc. and my surgeon was really sharp with her and made it clear that I'd been through plenty. This was a follow up years after surgery where I looked quite healthy but he'd seen me looking very bad on many occasions.

And I wish at least health professionals would understand that we can look perfectly healthy but that doesn't mean we are. How hard is that to understand?
 
That reminded me of possibly the very worst thing that has been said to me by my first GI specialist, just after an off the cuff sigmoidoscopy without sedation, that I looked as beautiful inside as I did on the outside!:ybatty::ybatty::ybatty:

I was totally stunned and really couldn't think of anything to say to that and I'm not know for holding back! I later told my GP and told her I never wanted to see him again and that she should never send a female to him again ever.
 
That reminded me of possibly the very worst thing that has been said to me by my first GI specialist, just after an off the cuff sigmoidoscopy without sedation, that I looked as beautiful inside as I did on the outside!:ybatty::ybatty::ybatty:

I was totally stunned and really couldn't think of anything to say to that and I'm not know for holding back! I later told my GP and told her I never wanted to see him again and that she should never send a female to him again ever.
Wow that is incredibly bad and awkward. I'm glad you didn't go back.
 
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