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.