We’ve all been there: Strangers send messages offering unsolicited advice about how to manage your Crohn’s disease, how to cure your symptoms, or how certain products can cause or prevent flares. We all have heard the “my friend’s friend did this” spiel. It happens more than you’d think.
I am not the first person to share personal stories and invite others into my life, and I’m sure others have received messages like this, too. I have had individuals try to sell me vitamins, candles, makeup, and whatnot – things that will “help” my issues. I even have received suggestions about my mascara.
I’ve received genuine suggestions with helpful information and messages from people checking on me. But even today, I still receive messages with unrealistic suggestions and incorrect statements about how to deal with my issues. I also have had those who try to shame and blame me for my own suffering.
Offering recommendations is one thing, and I’ll usually respond with a thank you. But to continue to question me and tell me what “helps” only negates my battle, and suggests that I do not try to heal or help myself and that I do not know my own body best.
So, I wanted to tackle some IBD and diet-related specifics.
Crohn’s disease and ulcerative colitis (UC) are autoimmune diseases considered inflammatory bowel diseases. Crohn’s makes the processes of your stomach difficult because your stomach is fighting against itself. Healthy bacteria are seen as harmful, and your body induces inflammation to fight itself.
This causes ulcers and intestinal wall thickening that leads to more inflammation, creating a cycle. Eating becomes harder and more dangerous when getting the nutrients your body needs, and your bathroom visits become that much more frequent.
Because Crohn’s is in the GI tract, it can affect from top to bottom, which is not helpful for a diagnosis or treatment. This can cause permanent internal inflammation and damage that can also cause extraintestinal symptoms and problems for patients as long as irritation continues without remission. Crohn’s can get worse, and the longer a flare, the more damage that can be done. Remission, medications, surgeries, or resections are often the only way a Crohn’s patient will respond. These are not a cure.
From the stomach to the eyes, and including muscle and joint pain, mental health concerns such as depression, and overwhelming fatigue, patients can have a number of signs, inside and out. A number of things can happen with IBD, including liver damage, colorectal cancers, surgeries, and abscesses. The entire body can be affected by these illnesses.
No two IBD patients are alike. Symptoms can be unpredictable and vary from patient to patient. What may work for me may irritate you. Regarding treatments, foods, and symptoms, each IBD warrior can have a disease individual to them, which makes these diseases so hard to diagnose and manage.
There seems to be no rhyme or reason to my individual disease in relation to my diet. But, regardless of my meals or diet, the disease still lingers. It is still there. If I choose to remove these foods from my diet, the disease remains. Diet does not necessarily matter with my individual symptoms of my individual disease.
With so many options and diets, such as liquid, vegan, Paleo, grain- and lactose-free, sugar-free, high- and low-fiber, juicing, even high-fat, it is impossible to find consistency with each IBD patient. Many of these will be mentioned or brought up to IBD patients and offered as a solution to our tummy troubles.
Sure, diet, overexertion, and stress can aggravate symptoms. But even with diet change, the chronic illness does not go away. Sadly, changing diets may not fix your symptoms or disease. Many of the other problems will still be there, causing trouble internally.
I personally keep a food log in my planner. Of course, with my ulcers and inflammation, spiciness and things like tomato sauce and hot sauces affect my stomach, and I know how my body will react. Sometimes something as simple as a bottle of water will leave me hurting. I write down every symptom or struggle I have. I have changed my life to help manage my disease and I am still waiting on remission. But sometimes I do splurge.
Lastly, a diet cannot cure Crohn’s disease or ulcerative colitis. Nothing can. There is no known cure for Crohn’s or UC yet, and science has not proven that food or things like stress can even cause Crohn’s.
For me, It Could Be Worse.
***
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.
You should do a bit of research before publishing your opinion. The Specific Carbohydrate Diet is clinically proven to get folks into remission from Crohn’s Disease without meds. Seattle Children’s Hospital and other hospitals are now advocating this diet as treatment.
Actually, Beth, I have done quite a bit of research, the Specific Carb Diet included. This diet had been used mainly with children and there are many studies working currently to see the efficacy of this diet. This diet is more about ‘allowing the stomach to heal itself’ rather than being a cure all for Crohn’s. This is a form of disease management when I don’t want to just manage, I want the cure.
That’s confusing me. Wouldn’t you rather “manage” and feel great than spending your young life in hospitals, doctors’ offices and infusion centers?
The people who write these Columns are writing from personal experience, opinions and research. If you don’t like or agree with what you read, it’s not right to insult the intelligence of the author.
This is such a negative and false article! Diet does matter! We may not know exactly how but we know it matters! Microbiome studies have been conducted and it is commonly believed that gut microbiome is one of the key factors in this disease. Diet (among other things) directly impacts gut microbiome! If it is easier for you to say it doesn’t matter so you could eat whatever you want and suffer the consequences it is up to you but don’t confuse and discourage others to live healthier/better and more positive lives.
Natalie, thank you for reaching out. I understand your opinion, and while diet may work for some, it truly does not help all. I do not “eat whatever you want and suffer the consequences”, matter of factly my diet has changed significantly in the last few years. Did it help me? Has it helped me? No. There are a number of studies to see if diet can help symptoms, but again, diet is not a cure. That is my point. Being offered fish oil or gluten free diets becomes patronising and negates the battle of those who know their bodies and tried everything, diminishes the battle of those who tried and know that the white rice and chicken or all liquid diet isn’t helping. I understand each person is different and I try to express that this is my patient perspective, never trying to discourage or tell others what to do. Some experience what I go through and for some diet has been key to their health. I try to state in each article that this is what I go through and not everyone’s experience. I am sorry you found this negative but it is my personal experience, negative or not. But it is not false, because for me diet hasn’t helped and it certainly won’t cure me.
These columns are written by the authors experiences and research they conducted. Just like what your opinions are research is….. If you don’t like or agree with what you read, you should stick with what ever degree of manners you have and not bash the columnist. Each and ever person with Crohn’s are affected in different ways. If you have the disease, than you would know that. Show some respect for others and don’t bash them.
I am sorry. I see what you mean. Diet may not be a cure but it does help some people. It doesn’t help you just like many medications don’t help some people also. It just sounds like you were speaking in general terms when you were really just referring to your own experience. In my experience it’s not just diet. It’s also quality of sleep, emotional state, being physically active. It’s not a cure but it makes me feel better. I just wish more people would share their positive and uplifting experiences. I hope you feel well and stay in remission for a long time!
Thanks for writing this. I have Crohn’s and agree 100% with everything you said. I wish cutting out gluten, or dairy, or whatever, would help. Sad thing is it does not for many of us. I take probiotics and supplements, and eat a healthy diet, yet the disease is still there. People just don’t get it!
Thank you for understanding! I hope you find relief!
Mary, this is a great article to share with family and friends who think you are sick because of something you ate. I’ve eaten NOTHING for long periods and been sick. This disease often has a mind of it’s own. I think people are missing the point of your article!
Thank you for understanding! I hope you find relief!
This is a definitely an opinion piece, and a terribly misinformed one too. It bothers me that this is included with actual news articles. Current research has moved away from calling Crohns an autoimmune disease and research studies are looking at the SCD diet. The author’s comment about not just wanting to manage the disease, blows my mind.
I want a cure, not management. And I’ve said before, this is my personal perspective. Not a suggestion or advice for anyone.I understand each person is different and I try to express that this is my patient perspective, never trying to discourage or tell others what to do. Some experience what I go through and for some diet has been key to their health. I try to state in each article that this is what I go through and not everyone’s experience. I am sorry you found this negative but it is my personal experience, negative or not. But it is not false, because for me diet hasn’t helped and it certainly won’t cure me.
And where is the information about pulling Crohn’s away from being an autoimmune?
This column is strictly in refused so to the authors experiences, opinions and research, which Mary provided. Just because it’s not something you agree with doesn’t make bashing a actor justified. Your opinion is your own, you don’t need to call people out just because you don’t agree.
It’s quite dangerous to publish such statements that discredit new dietary research–it might turn people off safe treatment alternatives such as the Specific Carbohydrate Diet, and instead, drive them to think that the potentially dangerous drugs that only work for a fraction of patients are the better (or only!) way.
There are thousands of adults, and some of them quite prominent, that have been cured from their IBD through grain-, sugar- and preservative-free diets. Of course, it depends on how you define “cure.” If a cure means to be able to keep abusing your body with chemicals and other items a person wouldn’t have recognized as food 200 years ago, then no–that might not be attainable for many IBD patients. But if it means eating what humans have evolved to eat and thrive on for an eternity, then yes, there’s a cure out there.
There are more and more medical professionals grasping this now, so hopefully, we will see a big shift very soon. More GI doctors treating with diet FIRST will also mean that there will be more convenient food available for those of us who embrace healing through real food.
Thank you for reaching out.
Like i have mentioned, I understand your opinion, and while diet may work for some, it truly does not help all. I do not “eat whatever you want and suffer the consequences”, matter of factly my diet has changed significantly in the last few years. Did it help me? Has it helped me? No. There are a number of studies to see if diet can help symptoms, but again, diet is not a cure. That is my point. Being offered fish oil or gluten free diets becomes patronising and negates the battle of those who know their bodies and tried everything, diminishes the battle of those who tried and know that the white rice and chicken or all liquid diet isn’t helping. I understand each person is different and I try to express that this is my patient perspective, never trying to discourage or tell others what to do. Some experience what I go through and for some diet has been key to their health. I try to state in each article that this is what I go through and not everyone’s experience. I am sorry you found this negative but it is my personal experience, negative or not. But it is not false, because for me diet hasn’t helped and it certainly won’t cure me.
As I mentioned, I have done quite a bit of research, the Specific Carb Diet included. This diet had been used mainly with children and there are many studies working currently to see the efficacy of this diet. This diet is more about ‘allowing the stomach to heal itself’ rather than being a cure all for Crohn’s. This is a form of disease management when I don’t want to just manage, I want the Cure and links to these ‘facts’.
Thank you, Catarina. Right on.
“If a cure means to be able to keep abusing your body with chemicals and other items a person wouldn’t have recognized as food 200 years ago, then no–that might not be attainable for many IBD patients. “
I have yet to meet a GI Doctor or IBD specialist who recommends diet as a possible cure. The problem with people who think it’s all about diet is they do not consider all the individuals this DOESN’T work for and there are a lot of us. Don’t you think we’ve tried all of this? If it’s such a cure them why doesn’t it help ALL IBD sufferers?
Debbie, this is so spot on and exactly my thoughts. It cannot be a cure if it only helps a small percentage. Like medicine only helps a certain group, diet does the same. With these there are still so many of us who still haven’t found relief. We need a cure not just diets or meds to maintain us for the time being until they stop working. Thank you for your comment. 🙂
These columns are by the authors experiences, opinions and research found, which was provided. Just because you don’t agree with what the author has written, doesn’t give you the rights to bash the columnist. You don’t agree with what she wrote, just as I don’t agree with what you did. It’s my right to have an opinion but I certainly my wouldn’t bash you about yours. I’m only writing to tell you it’s not right to judge or bash others. And just for your info, no there has not been a cure discovered. Maybe some people can eat certain foods and avoid others helping with their symptoms. If they don’t have symptoms any more, it’s called remission. That doesn’t mean the person is cured.
I can’t believe the ugliness you ladies spill. No wonder you are sick. Stop being judgmental and keep in mind not everything you read is going to be for/about/or with YOU in mind. I agree with the writer and I’ve had this illness since I was 15 and I’m not 54, food doesn’t have much to do with it. What it does do, is irritate the heck out of my ulcers or with Short Bowel Syndrome the food isn’t firm enough to stay in when I sleep. One day, tomatoes hurt, the next week they don’t….
I just don’t understand attacking this young lady the way you have. Grow up!
Thank you Marcie for understanding and replying. To each their own.
For some people, there is hope that things will and do get better, I am one with UC. I don’t know if it’s just temporary, but I appreciate life more now and take a day at a time. I don’t know whether it was the IBD-AID diet, supplements, stress reduction, but something worked, and I am so thankful to those who put the information out there. I think many of us are looking for positive ideas that may help, and even if they don’t, we keep trying. I found the article rather discouraging and to some it would feel like ‘why bother doing anything cause it’s going to get me anyways’. While I understand that IBD is very complex and perhaps not just diet related, everyone’s experience may be different, new drugs are being developed, and we most of all need to believe in the power of healing. I think we all know there isn’t a cure but don’t need reminding, it doesn’t help.
Suzanne, thank you for reaching out. I am sorry to remind you that there is no cure or to discourage, but there are many who do not know this. There are many who think diet is the key. There are many who blame stress. Or lifestyle. There are many who offer up the ‘fixes’ their cousin’s girlfriends mom used and its not so simple. I have blogged and discussed my journey for years and people continue to offer up quick fixes or diet fads. There is always hope to get well but the realities still need to be discussed, because some may not find relief so easily. It may be a battle of its own just to find something that helps. This is what I am dealing with is all.
This article is downright irresponsible. I will be following up with ibdnewstoday.com
Robert I am sorry you feel this way, but as I mention, this is my personal patient perspective, not a suggestion to others or giving a medical plan. I am never trying to discourage or tell others what to do. Some experience what I go through and for some, diet has been key to their health. I try to state in each article that this is what I go through and not everyone’s experience. I am sorry you found this negative or ‘irresponsible’, but it is my personal experience, negative or not.
But it is not false, because for me diet hasn’t helped and it certainly won’t cure me. This is my experience.
As per the website and below each article:
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.
This is an opinion piece, ok fine. But the title is click bait.
“Crohn’s Disease and Diet: There Is No Magic Solution” – very misleading.
I maintain remission through hard work, careful decision making, and forcing myself to have a positive attitude. Diet is the foundation of everything. Medicine plays a role too. Not exactly a magic solution, but a solution none the less.
I hope someday you have the discipline to discover what works for you and stick with it. Then you probably won’t be so bothered by people who are trying to help alleviate suffering in others.
How is it click bait or misleading? No magic treatment, that is pretty straight forward and truthful. There is no cure or magic treatment, there is only speculation and things like diets currently being looked at in studies. I think outsiders and sometimes the Crohnies, too, forget that sometimes. I have battled over 3+ Years and I have changed every aspect of my life. Discipline is not the issue (military veteran here), I know how to follow a diet or medication plan. Again, for some diet is key. Others its medication. Others its surgery. To each their own.
Excuse me but these columns written in IBD news today are expressed by the columnists experiences, opinions and research. Just because you do not agree with what she has written does not mean that you have the rights to bash the author. Period.
Reading through these comments,I’m horrified by the insensitivity. Let me start by specifing…”This is my personal life story” not to be confused with a scientific opinion lol I also know that crohn’s hits every person differently and that for most people with it, they experience periods of flares and remission and if your in remission then thank the Lord cuz I’d love to be there, instead this is my everyday… I’ve had crohn’s for 7 long hard years, I’ve never been in remission, I’ve had 2 resections one was life threatening involving a full obstruction and a fistula connecting my small and large bowel, I’ve been on every crohn’s drug out there including the newest entivyio and now on stelara. My disease is concidered steroid resistant. On a weekly basis some new study comes out about how in mice with “crohn’s like” disease they did well on a certain food but in the same article it says it’s different for every patient and that it might be different in human patients or that there’s a new miracle drug,vitamin or pro-perbiotic. This disease is ugly, life everyday is a struggle sometimes drinking water hurts. As a person living everyday in pain, when nothing you eat and none of the meds you take help, We need to hear that we are not alone…ask any ibd doctor or specialist and they’ll tell you the same thing, there is no cure. I had tried everything and changed everything and ended up the same… my specialist told me it’s nothing I’m doing or not doing, nothing I’m eating or not eating, it’s just that my disease is very severe, i cried like a big baby because i honestly thought that i could heal myself and started to slip into a depression because no matter how much i changed nothing worked. Imagine living everyday knowing that you have to repeat it all again tomorrow, then come online and read all the articles about how a cure might be just around the corner but never see articles about what its like right now for people dealing everyday just to get to tomorrow. Try to understand that we as ibd patients need to know we’re not alone in our struggles. Thank you for doing a truthful account of what it’s like today and not just hoping about tomorrow. There’s always a time and place for hope but sometimes we need to know we’re not alone.
Thank you. This is similar to my journey – still searching for remisson. Hope you find relief!
Same here. I try hard to always be positive and I’m glad that I’m not the only one who experiences the pressure of kind hearted and loving family and friends thinking that tumeric or yogurt is going to fix it…Keep on putting one foot in front of the other as they say… One day I’m sure they’ll find a cure for IBD, MS, lupus and arthritis. When they do, it’ll be a great day 🙂
To each their own. It never made me feel better knowing that others are suffering too. If there any positive blog posts or Facebook groups where people with IBD share their positive experiences I would love to know!
So what your saying is if someone with IBD is having a hard day or week not to come to you cuz you only want to know about the good…I like to see both sides of the same coin…Having crohn’s is not all good I see it as you have to take the bad with the good.
Not at all. I have not said that.
Here’s my positive IBD experience! I had moderate to severe Crohn’s all over my intestines and was lucky to stumble into SCD. Please check out my blog 🙂
Sorry something was wrong with my phone and I didn’t realize that the messages got posted 3 times 🙂
I signed up to get news articles about IBD from this site, latest treatments, new studies or trials, and information that may benefit me. There are other sites that are supportive, which are immensely helpful in coping with the daily struggles of IBD. For me, that is why I am surprised by this article, because I look forward to reading the latest news about IBD in hopes that there is something that may help all of us.
Unscientific, short on facts and long on opinions. If I wanted to read blogs, and I don’t, I would look elsewhere. IBD News Today can do better by its readers than publishing this kind of article.
Thank you for your insight, Judy. 👍🏻 I have stated numerous times that this is my personal patient perspective, not a suggestion to others or giving a medical plan. I am sorry you consider this more of a blog than article but I tell the truth. I am never trying to discourage or tell others what to do. Some experience what I go through and for some, diet has been key to their health. I try to state in each article that this is what I go through and not everyone’s experience. I am sorry you found this negative or ‘irresponsible’, but it is my personal experience, negative or not.
But it is not false, because for me diet hasn’t helped and it certainly won’t cure me. This is my experience.
As per the website and below each article:
Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.
Loved this article. Reading 12/2017 and it was the first article I have read in my 23 years of having Crohns that felt like I was reading my own experiences. I was diagnosed very young at 11yrs old and tried every diet out there. I came across your article in my search to find help tactfully dealing with those friends and the fad diets that are ever so popular at the moment. I am inundated with suggestions and always feel as though my explanation of “I appreciate the concern, I have tried it all” is met with an eye roll and unspoken judgement of not caring enough. As if I’m uneducated on my own disease by declining their new business venture and nutrition plan/diet.
Crohns is far from one size fits all in any way shape or form. I think those that use the term “cure” for anything related to this disease are blissfully unaware their disease is much less invasive then those of us living with an Ostomy, Seton, picc, biologics, and still suffering. You can very much can achieve remission but some get that confused with being “cured” and until we stop losing members of our community to this illness. There is NO CURE…yet
Thank you so much for taking the time top read my column and thank you even more for taking the time top comment. While I am so glad you get what I’m trying to say, I’m sorry you have Crohn’s! It gets very tiring and irritating (for lack of a better term) when you get suggestions everyday. Just yesterday I was asked, yet again, if I had tried essential oils. This one kind of makes me laugh, really, since my infusions cost upwards of $25 grand each but I could be ‘cured’ with a $2.99 bottle of oil! We just have to continue to educate and research and fill in those who don’t understand. 😊😊😊 Best wishes!