Skip to main content

The Truth About Crohn's Disease: Dispelling the Myths

The author has lived with Crohn's disease for more than 20 years. She lives in Canada.

Most people today have heard of Crohn's disease. Perhaps they have it themselves, or they know someone who does; and yet, this condition is still very difficult to diagnose. Twenty years ago, it was almost impossible. That's when I was first diagnosed, and at that time, I had been living with the disease for over 6 years.

Hypertrophy (increased thickness) of the intestinal wall due to inflammation and scarring.

Hypertrophy (increased thickness) of the intestinal wall due to inflammation and scarring.

What Is Crohn's Disease?

Crohn's disease is an inflammatory bowel disease. There are currently two thoughts as to what causes Crohn's:

  1. Autoimmunity: The body's immune system malfunctions and attacks the cells of the gastrointestinal (GI) tract—anywhere from the mouth to the anus.
  2. Genetics: There is evidence of a genetic link because it tends to run in families. However, environmental factors are also thought to play a large part.

There is currently no known cause or cure—be it pharmaceutical or surgical. Treatment options are restricted to managing symptoms and preventing relapse. When I was first diagnosed, I needed surgery to remove a small section of my small intestine. Twenty years later, I have now had over 12 surgeries—eight small bowel resections and four for other complications—and I'm still not cured.

Patterns of Crohn's disease.

Patterns of Crohn's disease.

My Experience With Crohn's Disease

I started getting sick when I was 13. That's when my symptoms first started appearing. I would have joint pain and swelling in my hands and feet. I was experiencing stomach pains and was tired all the time. I always felt ill, and my doctor had no idea what was happening. Thank God I had a wonderful family doctor and parents who just wouldn't let it go until someone figured out what was going on.

I was sent to see doctor after doctor and specialist after specialist. I was given every test you can think of and was diagnosed with everything—from juvenile arthritis and lupus to kidney disease and leukemia. I was even sent to a child psychiatrist because if multiple doctors haven't been able to figure it out all these years, it must be in my head!

I was finally diagnosed, incidentally, while I was undergoing yet another test for lupus. They gave me an "upper G.I and follow through" This is a procedure in which you drink barium while the radiologist takes a series of X-rays to track the barium through your digestive tract. This is a minimally invasive procedure that allows them to see any problems in your gut without scopes or probes. They spotted a narrowing in my small intestine that they attributed to Crohn's disease, the cause of my mysterious pains and illness. Something was wrong, and I was elated to know that I wasn't just going crazy.

Myth #1 — Crohn's Can Be Cured by Eating a Special Diet

There Is Currently No Cure for Crohn's

This is simply NOT true, and as a person living with the disease, I find this offensive. There are so many books out there in which the authors claim their diet can cure Crohn's disease—that if you stay away from this food and eat that food, you'll never have symptoms again. They all claim that thousands have followed their diet and have been cured already. In fact, it's gotten to the point where everyday people will tell you, "I know someone who had Crohn's. He doesn't eat anything with—insert ingredient here—and, now he's cured.

The Disease Most Likely Went Into Remission

I'm not saying that it's all a complete lie, but there is a difference between curing a disease and going into remission. Everyone is different. Some people will have an attack, then go into remission—maybe for several years—while others may never go into remission, will experience every complication, and may even die from them. The majority of people, including myself, will fall somewhere in the middle.

Maybe these people didn't even have Crohn's disease, to begin with. It may have been irritable bowel syndrome or some other temporary intestinal upset. Since Crohn's is a chronic illness, these people most likely did not cure the disease. It's more likely that they were able to manage their symptoms, but those symptoms will be back sooner or later.

The Final Verdict

Yes, certain foods can aggravate the illness, causing more inflammation and irritation. Avoiding these foods will help you reduce your symptoms and manage the disease. If you no longer have the symptoms, are you cured? Unfortunately, that is not the case. If it was as easy as watching what you eat, why do people still have it, and why do more and more people get it every year?

So, what should you do? Watch what you eat, and avoid foods that seem to irritate you. This will help you reduce your symptoms, but don't think that you are cured.

There is no known cause or cure for Crohn's disease.

Scroll to Continue

Read More From Youmemindbody

Myth #2 — Wheat and Junk Food Will Worsen Symptoms

Each Person Will Have Their Own Set of Triggers

Building on the first point, Crohn's disease affects everyone differently. Certain foods can aggravate one person's symptoms but will not affect another person. This is why there is no miracle diet or a set list of foods to avoid. If you have Crohn's, you'll learn very quickly what foods give you severe bouts of pain. In my case, I have a hard time with certain vegetables, salads, pasta, and even watermelon. I actually have no problem eating meat or junk food.

Severe Cases of Crohn's May Require You to Avoid All Foods

In the most severe cases, the disease may cause so much vomiting and pain that it won't matter what kind of food you eat. This will generally require you to be fed intravenously. I can't tell you how many times I've had to be hospitalized for a month at a time just so I could be fed intravenously until my symptoms calmed down. I would then be able to slowly introduce food again—first, just liquids, and then, soft foods like scrambled eggs and mashed potatoes. After a few weeks, I would be able to eat low fiber foods, and finally, a full regular diet, assuming all goes well.

The Final Verdict

Crohn's disease affects everyone differently, as do the foods they eat. You should be vigilant of what foods bother you the most and avoid them. There are no set rules for what you should and shouldn't eat.

Stricture of the large bowel

Stricture of the large bowel

Myth #3 — You Don't Look Sick, So You Must Be Fine

The Pain of Crohn's Isn't Outwardly Visible

This is something else that bothers me to no end and is also one of the reasons that make this disease so hard to diagnose. On the outside, you may appear perfectly healthy, but on the inside, there is a lot going on. As stated previously, Crohn's disease can affect any part of the digestive system—from the mouth to the anus—but most commonly affects the small intestine. Basically, the body's immune system kicks into overdrive and attacks its own cells in an attempt to eradicate pathogens, causing inflammation and ulceration of the intestine. Eventually, this can lead to scarring that can build up over time, narrowing the intestine and making it very difficult and painful for things to pass through. It can even lead to a complete blockage or obstruction that is extremely dangerous; the passages can become as narrow as 1/10th of an inch. This is when surgery is a must.

The only way to see the damage is to actually look inside the intestine using an endoscope: a small camera at the end of a thin tube that is passed through either the mouth (to view the esophagus, stomach, and small intestine) or through the anus (to view the colon, or large intestine, and the lower parts of the small intestine. An endoscopy can be a very painful procedure, especially when there is significant scarring. Likewise, any food you eat has to force its way past these obstructions or strictures. I can't even begin to tell you how painful this is. If the blockage is complete, it can cause a backup that will make you have to vomit. If this happens, that portion of the intestine needs to be surgically removed.

Doctors Are More Aware of This Now

Crohn's disease can also present with a lot of other symptoms like joint pain and swelling, rashes, to name a few. However, in most cases, it will be abdominal pain, constipation or diarrhea, and fatigue—things you can't really see. Even if you have intense pains, you may not look sick. In fact, I've had a lot of doctors tell me this when I've gone to the emergency room because of unbearable pains. Thankfully, most doctors are aware of this now. My most recent doctors joke about how tiring it must get to be told you don't look sick. Tiring? No. Annoying? You bet!

The Final Verdict

What most people don't realize is that for the patient with Crohn's disease, it is extremely frustrating when family, friends, employers, and even doctors don't understand what they're going through. I've had more then one doctor tell me I should have no problems with childbirth having lived with the pain I do. And it's not just the pain either; it's the total exhaustion that we have to live with when you have Crohn's disease flare. It's not just an upset stomach. It's not just feeling a bit tired.

Most days I wake up more tired than when I went to bed, and on those days, just taking a shower and getting dressed seems so daunting that I just want to lay down and cry in frustration. How do you explain to people that you aren't just being lazy—that even though you may look fine, you really feel like you're dying inside?

What You Should Know About Crohn's Disease

This is mainly from my years of experience living with Crohn's and from talking to those I know with the disease. I hope this gives you some insight on what a person with Crohn's disease may be going through. Maybe you know someone with similar symptoms and may be able to help them receive the correct diagnosis—or just be able to understand what they are experiencing.

If you take anything away from this article, I hope they are these three points:

  1. There is currently no cure for Crohn's. There is no miracle diet or magic pill.
  2. Crohn's affects each person differently. It may be worse for some and barely affect others.
  3. It's not all in our minds. Although it may not be apparent, the pain and fatigue are real—we're not just making excuses.

I would be really interested in hearing what bothers other people with Crohn's disease too. Leave a comment below if you or someone you know is going through the same things!

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

Donna. on April 30, 2019:

What you wrote is exactly what I’m going through. I’ve had such bad and frequent flares over the past year I feel desperate. I’v declined any more steroids from my doctor and feel like I’v had more success doing my own research on Wholistic remedies. But your right. There’s no cure. I may feel better for a week or two but then inevitability another severe flare happens. I’v been on Humira for the past 10 years but now this past year I’m so sick even days after taking it that I feel like it may be what’s poisoning me. I found a protein probiotic powder that seemed to work great for a few weeks but then another flare. I’m at a loss. I thought mixing it with nondairy milk (coconut or almond) might be okay. It obviously wasn’t. Now I’m mixing with water to see if that helps. Everyone says eat vegan but so many fruits and vegetables make me instantly sick. Like you said, there’s no magic diet. I’m getting afraid to eat at all. I need Help.

Carl on April 30, 2019:

I just found out I can’t eat watermelon, pizza, and cheese the hard way along with popcorn some of my favorite foods. I am having to use the toilet constantly have constant diarrhea and don’t see an end to it. To make things worse my woman is a persistent and constant source of stress wether she means to be or not. Orange juice seems to help as a change from water at least.

Maywone on August 01, 2018:

I am almost 60. Was finally diagnosed in approximately 1983, although from the symptoms I know I had it before that.

3 resecections of the small intestine. Very 1st one was at the illium.

I take 100mg of Azathioprine daily, plus an infusion of Remicade every 8 weeks. I also have to take B-12 shots, get extra potassium and have to take high doses of Vitamin D-3 every few monts.

My primary Dr don't understand the pain and fatigue I have every single day. I believe he thinks I just WANT to take pain pills. As for the fatigue, he believes a cpap machine will help take care of all the fatigue...WRONG.

They say I am in remission. Well if this is what remission feels like, I am going to heaven for sure.

I have fissullas between the rectum and vagina so every time I have a watery bowel movement, or pass gas, it can leak thru them and into my vagina. Another way of getting a different infection. No way to fix unless they take out the anus, which they can not re-attach, which means I would have to get a bag.

With all of this I don't get attached to men anymore so I live a very, very lonely life. I miss being held.

Ok, yes Crohns interferes with all areas of my life.

I have had many, many blockages. They are so much worse than having a baby. I almost had to miss my son's wedding. Finally decided to go with them knowing as soon after I would be heading to the hospital.

You go to the emergency room and ask for a specific drug you know will help, and your a drug addict. Lets try morphine first. NO that doesn't work so you go through a few more hours of pain until they end up giving you the medicine you asked for in the first place.

Crohns is still so misunderstood by people who do NOT have it.

Jill on May 30, 2018:

I have This horrible condition too' I have had my lower bowel remove and am about to have further surgery to remove all large bowel and rectum and anus. I have had a colostomy bag for five years and will have another bag.the only thing I am grateful for is that I didn't get this disease when I was young. The only advise I can give is that you look after yourself have plenty of rest and eat properly and try not to have stress in your life.

Anita , maui HI on May 08, 2018:

Aloha, bothersome is the constant fatigue, the constantly recurring gas and other pains. The daily pressure, nausea , struggle to eat, struggle to eliminate, struggle not to dispear and get all depressed waking up at night and in the morning just to start it all up again.

The worst is my husbands daily strive and lack of compassion. Lack of support. The daily struggle to get his sandwiches done in time and to cook him a good meal since he works so hard trying to catch up without my help. Cooking when you no can eat! Good one!

Anita on May 04, 2018:

It is only 1 1/2 yrs that I have crohn's so strong that pains and the digestive battle completely disabled my routine life with a lot of gardening etc. It retired me to the bed and room. A very unbelieving husband added to the pain. Physically and emotionally ( stress we dont need). Constantly I have to remind him of my situation as he often asks my help. New stress I would really love to but now I have to often turn him down. Hard on a relationship.

Yet the blessings are innumerable. With so much bed/downtime I read almost the whole bible bringing God so close to me. I learned quickly that without His mercies I cannot even eliminate when one realizes how powerless we are and cannot do anything without the blessings of God. All good comes from Him Who is Love. And the other powerful force with his hords is simply called the devil who takes severe attacks at us in our intestines, yet he cannot win. Jesus won the battle already through His death and resurrection. So let us put all our faith into our Healer ask Him for healing and patiently wait on/for Gods delivery. It is promised to us who try to walk with Him. Daily colostrum, l glutamine pwdr and slipery elmbark pwdr and marshmallow root powder are helping me to maintain a"tolrable" level on pain and bloat. Not to say I am in tears at times. But massaging the belly and oraying and praising God do bring a bit of immediate relief. I stopped solid foods. Make my own organic vegetable soup and puree it. Eat every day a cup. Greek yoghurt spiked with hawaiian spirulina and barley wheat alfalfa grass pwdr and flaxseed meal. Daily. When can I add real mozarella or boursin to my day and or eggs . Everything that solid wash down with liquids it helps. And also apple cider vinegar. Sometimes I cannot even drink water. But pure coconut water always goes down while it nurishes and replenishes without pain.

I join you in prayer that our dear Lord Jesus Christ is healing all of us all over the world. Especially who reads this. Amen. Glory Hallelujiah. Sibling with crohns no give up I pray for you all. Thank you enchanted 13 for your witness account!

Debbie on April 21, 2018:

I have had crohns for 43 years I had an ileostomy in 1981. I have to say that

for over 35 years i was not on any medications or any additional surgeries. In 2014 I had additional small bowel removed for blockage. Again, no medications it is not that I was opposed to medications , I had no symptoms . Today, another story, I have a severe narrowing in my small bowel again So probably another surgery and medications to prevent additional damage . Looks like I'm starting down a road to worsening health. I am EXTREMELY blessed to have gone so many years symptom free and living a some what "normal life" with crohns and an ileostomy.

I would like advice on a topic that seems petty but important to me becase it interferes, with my self esteem. I would like to no if anyone has a good remedy for the unpredictable gas! Since I don't have an anus, it's not like I can tighten my muscle to avoid the escape of noise. Anyone know of a solution? I've tried charcoal tablets,MN gas ex etc. Pain is bad enough, the gas is so embarrassing!

enchanted13 (author) from Toronto, Ontario, Canada on December 26, 2016:

Hi Suzanne!

Let me assure you that the degree of pain one experiences depends on how much disease is present, where it's located in the digestive tract..can be anywhere from throat to esophagus through stomach, the three parts of the intestine, and anus. Aside from that Crohn's disease has a myriad of other painful symptoms like arthritis, joint and muscle pains, severe rashes, it can affect your eyes and teeth etc. Lastly the amount of pain is directly affected by how much damage the disease has caused. Disease and scar tissue narrow the intestines..partial obstructions..sometimes to the point of complete obstruction where absolutely nothing can pass through them. The pain can be excruciating! In fact my own doctor and surgeon both told me that if I could handle this then going through labor and delivering a child would be a breeze!

Of course everyday is different. Sometimes the pain is not so bad and sometimes it's so bad crazy thoughts pop in your head because all you want to do is make it stop.

On my worst days there is no way the pain could get any worse without me passing out! My stomach would swell and become painfully distended to the point you think it's just going to burst open. In fact, you can rupture the intestine when that happens which is an extremely dangerous situation leading to sepsis and even death if they are unable to control the infection. So I would get extremely distended and the pain from the top of my stomach down to my pelvis would feel like it was literally on fire, like someone was holding a blowtorch to me. If you've ever burned your finger etc, you know how extremely painful burns are. Well my whole torso area felt like that. The pain was so bad I couldn't keep still. I couldn't lie down, I couldnt sit but couldn't walk either. I have to stand the whole night holding my stomach and rocking from side to side. I want to cry so bad but I can't even do that because it hurt too much. I'd get these crazy thoughts of ways to make the pain stop and it would last between 5 and 8 hours every night so I was getting no sleep on top of it. The longest it happened was almost 2 1/2 weeks every night then I would get a break and have my "normal" pain without the excruciating burning pain. Then it would happen again. So just as my pain varies from day to day, so does everyone else's and everyone has variying degrees of disease and damage so it's hard to comment on how much pain someone else has. It's not just pain either that can prevent someone from being able to work, it's hard to hold a job when you're vomiting all the time or are constantly running to the bathroom etc. The worst part is you don't know what days you're going to be really bad so even getting a part time job is difficult because even if you have to miss a day of work for every three or 4 days you work, you won't have a job very long.

Of course I don't know your brother so I suppose he could be milking it but I'd give him the benefit of the doubt for now. You don't know what he's like behind closed doors. If he's anything like me then for my family's sake I would never let them know how bad I was feeling unless it was unavoidable because I knew how much it hurt them to feel helpless because there's absolutely nothing they can do. I'm sure he doesn't want his son to see him sick or in pain either. Hope this helps clarify the varying degrees of pain people experience.

Snakesmum on November 28, 2016:

Suzanne, as someone who has Crohn's, I can guarantee that sometimes it can be MUCH more painful than a period. When you have spent what seems like hours writhing in agony on a bed, it is most unpleasant, to say the least. That never happened with period pains, that's for sure.

Suzanne on November 27, 2016:

What about my brother who has Crohns & says he's "in so much pain" he cannot work anymore (yet he can cycle & hike)... lol

I feel he's snowing everyone over (including his wife-who's had to go back to work F/t to support him & their young daughter)....Meanwhile my Bro & his daughter are having the best of times out & about while wifey is working her tail off..

not sure I believe that Crohns is any more painful (in GI/abdomen etc ) than what every woman goes thru with her period &/or pregnancy.... comments??

enchanted13 on May 10, 2016:

Thank you so much Snakesmum for your kind words and well wishes.

It makes me so happy to hear about people who are in remission and I pray you continue to stay symptom free from here on out!

Snakesmum on May 09, 2016:

Very good article enhanted13. As a Crohn's sufferer, I can relate to some of what you are saying. Only some of it, because I am lucky enough to have in quite mildly and intermittently. Some foods are triggers, and although I used to love curries and spicy foods, they are no longer possible. So far, I've only been in hospital once, and didn't have to have surgery, fortunately. Currently, it seems to be in remission. Hope you get some relief from yours soon! Best wishes.

enchanted13 (author) from Toronto, Ontario, Canada on October 10, 2014:

Dear Kas, I'm thrilled you are in remission. Unlike you, I've had the disease for about 30 years now and am highly educated about the disease. I agree with you, as I said, some foods and especially stress do make symptoms worse, absolutely! However food alone did not cause this disease nor can it alone cure it. I pray you continue in your remission. God Bless

enchanted13 (author) from Toronto, Ontario, Canada on October 10, 2014:

Hi Lindsay, I am thrilled that you found something that works for you! It's my pray that every person suffering be cured from this wretched disease! As well, i didn't say the "diets were crazy", I said they didn't work for me and haven't worked for a good many people. What offends me however is that because it didn't work for me, it somehow means that I haven't "worked my butt off" and instead am laying around wallowing in self pity. It is so offensive to everybody suffering right now who have tried everything under the sun they've ever heard of but still experience symptoms! God bless all those who tried different diets and have found relief or a cure. I'm not against anyone doing that but don't blame that person if it doesn't work for them. If that did work on everybody don't you think it would be the standard method across the board that every doctor would prescribe to their patients diagnosed with disease? The reason it's not, the reason there are hundreds of thousands of people living with the disease and more diagnosed every day is precisely because it doesn't no matter how much I wish it did. I encourage all people to try anything and everything to find relief but I certainly don't blame them if it doesn't! I have had to get my "food" and nutrients through TPN for the last 2 years. It is a special IV that uses an artery in my chest. Even though there is no food going through my digestive tract, I still experience pain and vomiting, my joints continue to swell and cause pain and I'm still exhausted all the time. You know, few people realize the guilt involved with having a chronic illness.. for the pain you cause loved ones who want to help but cant, for all the time people take out of their lives to visit you in hospital, for not always being able to commit to plans made with friends because you don't know how bad things will be that day, for feeling like its somehow your fault and for a million other reasons. I've had 30 years of trying anything that offered a glimmer of hope but I absolutely refuse to let you or anyone else make me feel guilty anymore because my disease is still active and I will stand up for anyone else made to feel that way. There is hope, there is always hope..there is hope that if one thing doesn't work for you, something else will. I'm not crushing anyone's hope, you are. By claiming this one way is the cure and if it doesn't work for you it's because you're lazy or aren't doing it right or just don't want to be cured.

I pray for your continued health. God Bless.

enchanted13 (author) from Toronto, Ontario, Canada on October 10, 2014:

Thank you so much, I'm so sorry for the delay in my replies. I've just been too ill but I'm grateful for people like you and others who are devoted to helping find a cure or at the least, something to ease the suffering! My sincerest appreciation!

Kelsie16 on September 02, 2014:

I was diagnosed 8 years ago when I was 13. I too went through many doctors and test. I have had problems since I was two. They told me it was a bacterial virus. 11 years later they found the real cause of my pain. I've tried to explain my symptoms and never having energy but a lot of my family thinks I use it as an excuse. It really upsets me and I make myself get up and socialize a lot of the time. So if you have friends, family members with this disease, please cut them a break cuz they aren't just saying they don't feel well, or can't eat that to be rude.

grlmisunderstood on August 15, 2014:

Wow im in tears your whole post is exactly how I feel thank you for posting I feel like showing everyone that doubts me and doesn't understand.

FaithinGod- South Africa on August 06, 2014:

I was diagnosed with Crohn's disease in 2002. The abdominal pain started during he pregnancy of my son at that time. He is turning 13 yrs this year and I am 38 years. the abdominal pain is sometimes unbearable. To experience two to three days in pain every week is not easy at all. God has been so good that He just comes through for me all the time. I am very grateful to God for giving a wonderful family who understands what I am going through. Even my children they are amazing indeed. They pray for me everyday and everybody around the world who is facing the same challenge. There are days that I am very tired and some days when I can run a marathon. The bowel movements are very painful but I am coping. The medication my doctor prescribed really helps a lot especially the painkillers. I also do a lot of positive, healing confessions daily as this also forms part of my healing process. Nothing is impossible by God. His desire for us is to be in good health and enjoy life to the fullest. Sometimes its difficult I know, but I remain positive at all times. I couldn't talk about the disease before because people do think that you might be faking about it but I can freely talk about it today. Thank you all so much for positing your testimonies and advise. You don't know how it can transform someone else's life. We were not born with any infirmities and will not die with it. I rebuke every symptom of it and declare that we are all healed in Jesus Name. Stay positive at all times. Take care