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.
What Is Crohn's Disease?
Crohn's disease is an inflammatory bowel disease. There are currently two thoughts as to what causes Crohn's:
- Autoimmunity: The body's immune system malfunctions and attacks the cells of the gastrointestinal (GI) tract—anywhere from the mouth to the anus.
- 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.
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.
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.
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:
- There is currently no cure for Crohn's. There is no miracle diet or magic pill.
- Crohn's affects each person differently. It may be worse for some and barely affect others.
- 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.
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:
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
kyle on July 04, 2014:
I was diagnosed with crohn's around the age of 11 (I'm 24 now). It's been really hard for me these past few years. not just the daily struggling, but a cognitive dissinance that came with a more mature understanding of life, the existential backlash of realizing the full meaning of "chronic illness". Being an artist in nature i was drawn to the question the phrase implied. Why is it incurable? Why is it for life? Why do they tell me my immune system is attacking me? Regardless of if it's true, it's ethically poor to imprint this sense of internal conflict on us. Accordingly I went into the fringe of belief and understanding, and still, down into a scary depth. A lonely depth. Belifs like the law of attraction or dolores cannons whole thing just reinforces the internal conflict. (It's all in your mind) tastes like venom in my mouth. I have no doubt in my mind that if I would have lived off the land all my life I would not have this wretched illness. I often like to think about the old tribes that would dance and sing and give their all when a member of their community got sick. That is what's lacking.
Sorry about ranting, it's just that your the first person I've heard say some of the things I feel every day. Thank you for being who you are :)
Ann Martin on June 30, 2014:
Dear ones, Please don't ignore new research or new ideas, or find it offensive. It's important to keep an open mind. If you have a child diagnosed with Crohn's, your first objective is stopping the pain (enteral nutrition), and your second is getting the child to grown and mature. It could be that some cases are triggered in some people by an infection or series of infections. In other countries, now, and when you were diagnosed, Crohn's disease is called Intestinal TB. There must be a reason for this.
Lenner on May 30, 2014:
I was diagnosed 10 years ago with Chron Disease. I told the doctor that the pills made me fill worse and I always had to go to be bathroom right after taking them. He did not change my medicine, so I just stopped going. A couple of months ago I went to a new Gastro.... he gave me a colonssopy and told me he did not see that and had told me to take immodum pills once a day. He is trying to get me down to 2 bowel movements a day. I am thinking about a suit against that first docor....what do you all think
Patty1386 on May 13, 2014:
A diet does not "fix" the disease but it can reduce the pain. I went gluten free 2 years ago and the only attacks I have had since were caused by aspirin and by a different method a chiropractor used. I still get bloated and have tenderness but...I believe it helped. Also when I feel an attack coming on I vomit to get rid of what is in my stomach trying to get through my intestines. It helps! Also I don't eat for three days after to allow my intestines to heal.
Have you ever tried riding in a vehicle without a seatbelt and found how much less your problems were? It is amazing how much pressure the seatbelt puts on that area of our bodies...and read about "seatbelt syndrome" and what happens to normal people wearing a seatbelt when in an accident. Personally I would rather not take the chance of doing any more damage to that part of my body. I have not worn a seatbelt for over 20 years and have never been in an accident.
Kas on May 07, 2014:
I have been diagnosed 5years ago with crohn disease and hearning that diet has nothing to do with it makes me so mad.i think you should educate yourself about the disease before posting anything.stress and diet are two things that keep most people in long remission.
Kigoral on April 03, 2014:
Great article. I can't count how many times people tell me to stop eating Gluten and that will most likely fix everything.
And when one day you're feeling great, the very next day terrible, people just assume you're faking it.
CWCincy on March 31, 2014:
Thank God, someone who finally gets it. I'm a 20 yr Crohns patient and I won't bore you with the details but it's a severe, complex case of it and I've been through everything you mentioned. At the time we were diagnosed it was prednisone and cut it out philosophy- and both have had bad side effects.
It hurts to have people you love not understand. It hurts to want to live as you used to and have people think you choose this life by not doing "this or that" that may have worked for someone else with an entirely different variety of the disease or did not have most of their digestive system removed. You were a great comfort to me and I appreciate your article. It was extremely thoughtful, truthful, and well written. Best wishes and the best health you can have considering.
Donetta on March 13, 2014:
Thank you for being so honest about this awful, debilitating disease. Ive had Chrons for over 25yrs now. I 've tried diets, surgery, DNA inhibitors (remicade) multiple meds, multiple hospitalizations, probotics...you name it ive tried it. Its extremely difficult to talk about and harder for "outside people" to understand. Not to mention very few nurses, doctors; medical personnel understand it either. Thats hard for me to say because I'm a nurse and have seen first hand the reactions to patients that have chrons that nurses M.D. s and medical people have towards this disease. "I cant see it so it must not be as bad as this person is making it out to be" or "she/he is crazy" or "they must be a drug seeker". I just want to say no one treatment helps everyone. We must all find what works for us individually. And sometimes nothing works and we must do the very best we can with management of the disease. I do however believe in education about chrons so if you come across someone who doesn't understand, and is willing to learn.. educate them it is the only way we are ever going to get people to begin to understand about this horrific disease.
Richard H. on March 06, 2014:
DIET CURED MY CROHNS.
This "myth" about diet not curing Crohn's is so unfounded. I was diagnosed with Crohn's disease 14 years ago (age 12), and I had experienced symptoms on and off for a good 6-7 years before that. I have had probably 15 severe flareups over the years, bloody diarrhea, vomiting, the works; each time taking a high dose of prednisone to beat the disease back into place. During my last colonoscopy (last year) they removed 5-6 big colon polyps, and discovered a severe stricture in my small intestine. Over the years, I had tried a few different dietary approaches to rid myself of symptoms, including Paleo, SCD, limiting dietary fiber, reducing junk food, etc.
Now to explain how diet has CURED me of all symptoms. This past summer I had just come off of 40mg/day of prednisone after being on it for over a year. About two weeks after weening, a flare up started up again. Frustrated as ever, I went back to the drawing board, and began researching dietary approaches. I decided to give veganism a try. To make a potentially WAY longer story short... sticking to fresh squeezed produce juices, and a mostly raw food diet with no processed junk foods (sometimes I have cooked rice, but never anything with wheat or gluten) has gotten rid of my symptoms 100%. The first two weeks on this diet was PAINFUL (juice fasting), I was having diarrhea, and loads of mucousy candida looking stuff in the toilet... but soon after, I started to notice real improvements, until I got to where I am now (symptom free). Is this a cure? Maybe not, since if I started eating garbage again, my body would probably react poorly; but this makes you wonder, is this disease really a "disease" at all? Or are our bodies telling us that we were not intended to live this modern lifestyle of too much stress, no exercise, a lack of sleep, and poor diet? It would certainly explain the rise in IBD cases.
Please be more careful about what you spread on the internet... this could be life or death for someone with the disease. I have no books to sell, no blog, not profits from this whatsoever. For those of you who are still skeptical, do the research yourself. There is loads of information out there about how other's have cured their Crohn's by following a strict raw food diet.
Michelle on February 26, 2014:
Please note a spelling correction to my post above......should of read sero-negative arthritis.
Michelle on February 26, 2014:
I was diagnosed with Crohn's over 30 years ago now and at that time I was the first patient my Doctor had ever had with the disease. The consultant at the hospital that I was under at this time told me that although they didn't know what caused the disease and that there was no known cure it would eventually burn it self out and would more than likely be replaced with a form of arthritis known as zero negative arthritis that effects the hands and feet. I suffered for many more years with this debilitating disease, but I am now 57 years old and can honestly say that in my case I believe that it did burn it self out and the last flare up I had was when I was about 40. After being very slim all my life, I have put on approximately one and a half stones in the past 5 years and I do now suffer from arthritis in my hands and feet just as the consultant predicted over 30 years ago.
cici on February 10, 2014:
so im 34 and just trying to figure out what's wrong with me i have all the stmptoms of this disease and felt like i was crazy but this story has helped me realise im not im currently in a flare im guessing because non stop pain and diareah and even after sleeping severly low energy my hair is falling out to slowly but enough at this point that i can tell and i also have the young looking thing as well im going in for an upper and lower scopping this month but with how im feeling i may end up in the hospital befor then im just soo ill ive never felt this sick and weak in my life what is also crazy tho is all my life ive had little to no simptoms execpt when i was very little i would screem and cry all yhe time as a baby and want more food all the time my grandmother says i was the worst baby she ever known due to how un happy i was then when i was a few years older many foods such as lemon and orange juice or anything with a high asid content and onions have always seemed to upset my system but never to the point that i am now and ive never been diagnosed so im hopping by the end of this month i will know and have my diagnosis so i can be properly treated for this situation because like i said ive never been inthis much pain or this ill oh and by the way ive had 4 live births and 2 that were not .
Hmm on February 09, 2014:
What's jesus got to do with it? What a load of crap, this disease is annoying and sometimes even debilitating and theres no jesus to help you out.
Luke on February 05, 2014:
What a well written article, it's too well thought out to just be a post!
I've had Crohn's for 20 years now and one thing that really worked was this stuff called vsl#3DS. It's prescription probiotic. (It's like taking a whole case of yogurt in one little packet.) If your insurance can pay for it it really helps! It's not a drug but it does require a prescription. The DS version is the one insurance pays for here in the US. Hopefully Canada's health insurance covers it.
I don't offer advice about things often but I loved your blog. I don't work for the company. It really reduces the frequency of flares, I've gone a year or more at times with no steroids.
(I only mention it because it's not very well known. I had to tell my doctor about it!)
jennajones38 on January 20, 2014:
If u have accepted Jesus Christ as yr personal Lord & Savior, God doesn't js wnt u to live w/ ths.Jesus came tht u will hv life, & more abundantly.in ev are of yr life-body,soul & spirit.if u hd developd Crohns rgt aft tht strange exp. Of tht man who appeared to you, who js touchd u w/o askin
frank on December 30, 2013:
http://NearestToilet.com is a big help. In case you've an Android phone, it's helpful to stay connected with nearest toilets: http://bit.ly/K6yFbF. It's great to have access to 3 toilet maps this app offers when traveling. It rings when near a recommended/ thumbs up/ clean toilet.
Lindsay on December 16, 2013:
I find this article highly offensive, I had Crohn's disease for my whole life. Tons of AWFUL medications and countless surgeries. I was falling apart. I finally got smart and did my research I found the SCDIET. The scd diet is not some crazy diet like you were explaining and it does help people with crohns amazingly, it is the ONE AND ONLY diet for crohns.If you have the strength to follow it and do it the right way. This diet saved my life. I manage my Crohn's disease 100% med free! And it's not just some random "diet" it's a lifestyle and my doctor actually prescribes it for IBD and cancer patients! Your digestive disease has everything to do with what you digest. This diet has been around for many many years and it's all about starving the inflammation. So yes wheat, junk food, starch, soy, sugar, lactose,grains, gluten all feed the inflammation in your gut. Once you starve it out you start feeling better and your gut can start healing. And no it's not just a chance you get in remission.I know hundreds and hundreds of people on this diet who work there butts off to feel better and it's not just remission by chance. If you have never tried SCD very strictly and did it correctly then do not ever nock it. We all have the same disease and there is hope. Don't crush the hope of what saved my life and a million others.
Irina on December 11, 2013:
Hi, Im also having Chrohn's deases the last 3 years. I moved to Denmark from Ukraine and got sick. Now im 45, looking younger than many of my age :-) It took 1,5 years for doctors to find out what it is. Yes like many lost 7-8 kg, lots of pain but never too much at the toilet. My legs were so swallen as of shortage of protein, I couldn't take my clothes myself, was difficult to walk..... you know how it can feels... When they found out, put me on Remicade and Prednizolon(extremly terrible medicine in my eyes) but that was helping me at some point.... I was one of the most difficult at the hospital....but now im taking just Remicade(every 8 weeks) and trying to eat most organic food(small portions 5 times per day), always starting my day from a warm glass of Water with 40 drops of Hylack forte 30 min before i would eat. And taking Water 2-3 times per day with Hylak forte before eating. For sure if im thursty just drinking Water...but never so Cold or with ice. Never drinking Water with my food. Before or after. like at least 30 min later. Never mixing milk and meet... just no chanse for proteins to be absorbed. By the way Im not using much of milk:-) But with those Hylak forte drops, can eat cottage cheese, chocolate, milk in the coffee....:-) no problems. Yes i did choose myself to change Prednizolone for Hylak Forte and its helping me much better without side effects. I cant eat smoked salmon, or any other smoked Things... well they are not healthy anyway. Yes, Im taking care of what im eating and im eating almost everything that is natural (oftest homemade food: soups, fish, meat, rise, pasta, salats, apples from my own garden.....u know the more natural the better). My stomach simply hates E's and all kind of presesrvatives..... But im feeling much better!!!!!! than before. I think Crohn's deases is a life style sickness... and evern they say stress is not considered, i dont agree with them, stress takes a big part of it, as its a part of life style, the way of eating, what to eat, is also importan. In Denmark I feel like its not enough sun for me...:-) that can also make a problem as of luck of a vitamin D. Im not doing any sport, just to save my energy, but walking and sometimes working in the garden makes me to feel much better. Im just sharing with you my experience. My doctors were so much pissimistick about me...but look, im feeling my body much better then they are!!! I had 75 or 85% of my small intestine inflamed... it took them a time to figure out...just a little capsule with a camera help to make a diagnose in my case as it made possible to see inside of my small intestine.
Tammy Hales on December 09, 2013:
I have Chrohns disease. I went undiagnoses for many years with severe abdominal pain, live and pancreas problems from the inflammation blocking my bile ducks, severe fatigue and yes the classic symptom if diarrhea. Was constipation when I was a child though. This was all in my teens an all of my 20's before getting an actual diagnosis. Now at 42 I'm coming into yet another flare. My joints hurt so bad now that I want to just cry. Every time that I say I refuse to get back on prednisone, I always give in when the pain and fatigue is like this. I have had a good long bout since summer without a bad flare though. That's a great thing. So now I'm gonna brace for another, no telling how long bout of a flare. My other issue is we have no health insurance so I can't take the really expensive good drugs but I do get some meds from Canada that are affordable. Oh, did I mention that my hair falls out by the handfuls when this happens.
I don't know that I've really ever opened up and let out all these symptoms before. It feels kind of good. One more thing, my 24 year old son has chrohns as well and my older brother and my younger brother had it too. It has been just the past year that I found out a cousin on my dads side has it also. Now we know what side if the family it comes from. I am very thankful to know what I have and that it can be treated to a small degree better than if I were not diagnosed and I am thankful my son has treatment as well. Thank you so much for listening. I have appreciated all or the information on your sight. Thank you and God Bless you all.
Valerie409 on December 02, 2013:
My grandmother has had chrons, diagnosed 4 years ago. She has yet to go into remission (67yrs old). Her doctors do not seem to know what they are doing but there are no more in the area. She has been told she needs surgery but the surgeons will not operate because she is in such poor health. Her gastroenterologist keeps telling her to eat whatever she wants that only medicine will help her get better. She has never tried to stay off of anything because her doctors are not asking her to. Just this past week I have been put in charge of shopping and cooking for her, since she is too weak. Right now she is just on broth but if she starts recovering I would love to help her figure out her trigger foods. Do you have any suggestions?
hope777 on October 31, 2013:
I have crohn but JesusChrist is my faith I'll hang onto to him......☺thank you for sharing your experience
Lakisha on October 28, 2013:
I myself is not suffering from the disease, by my 12 yr old son is. He is currently on a lot of meds at high doses because of how long it took the Dr. to diagnose it. When i say far gone i mean he was hospitilized haven't been able to eat in weeks, had to be taken out of school because he had no energy at all. He slept all day and only got up to use the bathroom. my son went from a 97 lbs 12 yr old to a 62.5 lb 12 yr old in less then 4months. Thank god his is doing so much better now he will be a 107 lb 13 yr old next month. My only worry is that he is going to stop taken his meds because he is giving me a hard time taking it now. I have to stand in front of him to make sure he takes it. As a parent it is hard to watch your young child go threw something like this for the rest of his life. He has to take a laxitive every day because he does not pass his bowels like he is suppose to. Thank god he speared my son to have with me. It is frustraiting when people take light of this disease like i said no i dont have it but its hard for me to see my son going threw it so i wouldn't want to imagine the pain and discomfort of going threw it. Bless you all that are going threw it.may god be with you!!
Thomas Greenwell from Melbourne Florida on September 17, 2013:
I stand corrected, there does seem to be a cure for Crohn's...the CDC and NIH have both confirmed that Mycobacterium Avium Paratuberculosis is a causative in the disease. The best part is that the cure for MAP infections has been around since the 70's and is now in the public domain, so generics are available. A two year regimen of rifabutin alongside of clofazamine is what is usually prescribed. This was a treatment for leprosy. The genetic aspect of the disease seems to follow that of the genetic vulnerability to leprosy and tuberculosis, and it stands to reason, since they are all Mycobacterium. Good luck and good health!
Brittany on September 16, 2013:
I am a 26 year old female struggling with Chron's Disease and Constipation. I have been chronically constipated for over a year going to the bathroom once per week only with using heavy laxatives. I have seen countless Doctors and Specialists and taken natural medications, prescriptions, and still nothing works. I started the Lady Soma Fiber Cleanse about 2 weeks ago and have seen such a huge improvement! I am going about every other day 2x per day!!! No cramping, no pain, just normal movements. I take 2 in the morning and 2 at night with a probiotic. I hope this continues to work because if it does I may have found my solution!
Blossem10121 on August 29, 2013:
My mother has Crohn's disease and I know how badly this disease is. It often pains me to see her unwell and I wish that there was more that we can do about it. God bless you all.
Thomas Greenwell from Melbourne Florida on May 18, 2013:
Amazing hub. It is stories like yours which have inspired me to research and find some form of relief from such a horrible illness. It is true that there probably will be no cure since the problem lies in the genes. We can look toward at least controlling the manifestation of it though. The fact that some foods can trigger an attack in some individuals and not in others is not only a clue, but can be used one day as a diagnostic tool as well. I will continue to research and publish as long as there are people like you who suffer. I would imagine that the constant specter of another attack looming in the background must be like living under the sword of Damocles. God bless you and your strength.
donnaaaaa on May 10, 2013:
I'm glad I read this. Horrible knowing there is no cure. I've had this for only 8 months and its awful, I got diagnosed a week ago.
Kellix from Sandy Springs, Georgia on May 09, 2013:
I think yours hits it right on the head more than a lot of others I have read. Also I agree, it sucks when people think there's nothing wrong with you. I am a newcomer to crohns, I'm 44 but found out 2 years ago, right after a back surgery, than had an obstructed colon, they thought was my gallbladder wrong, Then I realized I had an idiot for a doctor, so I went to a colon rectal specialist and he was like dude you got crohns, He made a joke about it, like were not going to have to put a bag on you. I was horrified then he realized, I didn't know. I found out that drugs wouldn't help, only surgery. First one had complications, then I was in the hospital for another 2 weeks eating from a tube, and having back pain at the same time. That's the thing, then I had a fistuala, that would not heal, so another surgery. In the end I lost about 7 inches of both small and large intestine. Was in the hospital for 27 days total. See that's the thing, I don't know what foods irritate me, and the ones that don't. I just know when I don't feel good, or take off running to the bathroom, and people looking at me, like I'm fine. I got a new Gastro doctor and he was like so when did you find out, I was like 2 years ago and was shocked. I had my appendix out when I was young, I have heard that can hold off the symptoms. All I know is I hate this disease, it makes you where you don't want to eat period. And people do not get it. I ran into a girl that was a bag girl, she had diveticulitis real bad and had to have most of her large intestine removed. But it was the first time, I was able to talk to someone that understood what I was going thru. I hate my job, but can't quit because I need the insurance. Trying to find one is fun. I liked your article a bunch because, I really don't know what a flare is or remission. To me unless I take like whecol or questran, or pepto bismal I get the Big D regardless. When you tell people you hate eating, their like your crazy and I'm like what I have to go thru. I do. I can't even imagine what you have gone thru. I saw that guys book, I'm a professional hospital patient, I think he had like over 100 admissions to a hospital. I pray to God every night, for something to change, but it doesn't. Try to get used to it but its hard. Its like forget dating. Unless you can find a girl that has crohns and understands it. Like you said the way people are like just change your diet, are full of it. They don't know what its like till you live it.
Randi Benlulu from Mesa, AZ on May 05, 2013:
Like you, I have spent more than half my life with Crohn's. I barely remember what it was like before. Thank you so much for sharing such a thorough hub! I hope you are feeling good! Up+
Fedupwithillness on March 30, 2013:
"Crohns is not caused by diet. Crohns is not caused by stress. Crohns is not caused by etc., etc., etc."
If everyone is so sure of what doesn't cause the disease, then how about telling us what DOES cause it?
Roxie on January 31, 2013:
I was diagnosed with Crohns in 2009, and I hate to say this but YES a special diet can place a person with IBD in remission. I never took the drug either. I am living proof that the Specific Carbohydrate Diet works. And I would also like to say God gave me this specific diet too. Yes, you are right, there are a lot of diets out there that say they are the one, but I don't believe any of them. The lady that wrote the book was a mom on a mission to get her young daughter well and it worked, and now she is spreading the good news and she wasn't in it for the money. So people out there with IBD please know there is hope. Does it work for everyone? I don't know but I know a lot of people online who are on it and so far they are doing just great with this diet.
HA:D on September 06, 2012:
if your crohns gets bad enough, and you have no more alternatives, smoke weed.
Sarika Mehra on August 31, 2012:
I do not know how much will it help you ,but it does helps many,start doing prayanam like anooloom viloom and kapalbhati very slowly it will help you to heal gradually.
enchanted13 (author) from Toronto, Ontario, Canada on August 31, 2012:
Thank you all for your comments and positive feedback! I knew there had to be people who felt the same way I did but it's really great to have your feelings validated none the less! I apologize for taking so long to reply but have been battling another severe flare up the past year and a half. I have been in and out of hospital again for months at a time this past year and have suffered a ruptured gallbladder on top of it all. I had to have a picc line put in as I haven't been able to keep food down and it was decided to send me home with it as I was spending way to much time in hospital. As it was decided that this was going to be a long term issue with me, we are going to implant a permanent Hickman line so it is available to me whenever I need it.
Thank you Lotuslove19 for your reccomendation of remicade! In fact I have been taking the drug for over a year now and have found it helps a great deal with my joint and muscle pains, tho because of my short bowel it hasn't helped much with that. I would highly recommend it though for others with crohns as I know a lot of people who it has helped. It is extremely expensive, though because I am Canadian it is paid for by the government. Thank goodness for that because each infusion costs almost $6000.00 every 6 weeks as I am taking a double dose.
Anyway, thank you all again and please know that I am praying for all of you who are currently suffering and for those who are praying for their loved ones as well!
Take care, my friends!
Sarika Mehra on August 29, 2012:
Well,I can help you ,there is a biological drug called Remicade (http://www.remicade.com/crohns-disease)check it.Dr Nagesh Bhatt at Columbia Asia Bangalore treat this disease .the fact is it is a very expensive drug if one can afford it ,please go for it.
destiny blue on August 14, 2012:
I too was diagnosed 20 years aho and have had lots of painful time due to Crohn's but it has made me such a strong i dependent positive person. I have battled drug addiction due to the constant pain and suceeded. I have a healthy beautiful 8 yr old daughter and
Am a social worker. Being in pain every day is hard, but makes all the good things in life one billion times sweeter.
tracy on June 21, 2012:
Thank you! I just met my friend a year ago and he just recently shared with me that he has this disease. I am going to share this with him because he is at the point where he wants to give up. Reading this has enlightened me as to why he feels this way. Basically, he's tired! But maybe this will inspire him to keep fighting. I know its selfish of me but I can't bare the thought of losing him. Anyway thank you again for making me understand more about this disease. My prayers are with you and I hope you are doing well.
Trevor Meyer on April 26, 2012:
Thank you for writing this!!! I an 28 and I have been suffering from crohns for 10 years now. I believe that my symptons appeared long before I was diagnosed with crohns. I get so angry at time with my body because I don't get do what "normal" people get do because I am either in an out of the hospital or have medical bills to pay for. AGH!! In the past 7 months I had to quit my job as emergency mental health tech and withdraw from graduate school. My dream is to be counselor to help people with chronic illness but I don't know if that it is ever going to come true because of crohns.
I have to stay I have a great support system in place though. However, employers don't get how sick I actually am because I look healthy!!! I get a lot of comments like "you must have been out partying last night," "Why are you so tired all the time," or " Are you high." I just want to yell and scream because most employers don't care or don't understand.
My favorite things about crohns is being in the hospital is The NG tube, the pain medication you need to be on, the days without food, and your family and friend coming to visit you but they don't know what to say. Such quotes are "I am sorry," "is there anything I can do for you," or " I will be praying for you." I feel like I have became a sympathic figure and no one really expect anything from me anymore because I have crohns disease.
Sorry I am venting, I have had a pretty bad 7 month with my crohns. Also, I hope you can read this gibberish. The written word is something I don't really excel at.
Barbara Badder from USA on April 05, 2012:
OK. I read this for the second time and I've got to say I am jealous. I have Crohns but have never looked younger than I am. No fair. Just kidding about the no fair, but I wish it had worked that way for me.
Crohns is a disease - not me on April 05, 2012:
I've known I had Crohn's for more than 20 years. I've had quite few flareups and close calls over the years (twice near death as a result of complications). That said, all in all I've lived a great life in spite of every thing. My advice is to not let the disease define you. Don't let it rule your life. Rule it. I have to be pretty bad off to cancel an activity because of Crohn's though ocassionally there is just no choice. Anyway, really enjoyed your blog. You 'nailed it'. Hope you keep it up.
Barbara Badder from USA on January 05, 2012:
Another comment from people, that I can't stand is "Are you anorexic?" It's bad enough when you lose weight from the Crohns, but I feel like I've told them I'm sick, why do think I'm anorexic?
I'm now 60 and I do have some good news for you. I was told it improves as you get older because your immune system lessens and so far mine is better. Not gone, but better than when I was younger. This was a good article and I hope the right people read it. Thanks.
nursedkids on July 08, 2011:
I really enjoyed your article. You made so many great points about peoples perceptions of Crohn's disease. My son has had Crohn's for the past 7 years. He also suffers from Psoriatic arthritis and Hasimotos thyroid disease. He has a great attitude about everything that has happened to him. He currently takes 18 pills a day and gets IV Remicade every 6 weeks. I also was diagnosed with Crohn's 3 years ago after surgery for a bowel obstruction due to strictures. I am going to share your article with some people who I know will appreciate your honesty and refreshing candor. Thank you.
enchanted13 (author) from Toronto, Ontario, Canada on June 03, 2011:
So happy to hear you are in remission now Will!! It is my fervent hope that you never experience another bout of Crohn's again.
The daily exhaustion has to be one of the most frustrating symptoms of this disease and one of the most difficult for healthy people to understand. Hopefully as more and more people become aware of the disease and it's symptoms, others won't have to go through the negative experiences we have.
Stay well, my friend!
Will on June 03, 2011:
I cannot begin to tell you how relieved I am to hear this from another person (as awful as it sounds) When my disease was first active (not yet diagnosed) I was in the belief that I was just lazy all the time when in fact I was suffering with anemia. Not a single employer I have had has been sympathetic to my problems including the ex-manager who watched as I dropped from 10.5 stone to barely 8 stone within 4 months.
I am however in remission and have been for about 4 years and hopefully this will continue, although after losing over two foot of bowel I am still having problems with exhaustion and anemia.
enchanted13 (author) from Toronto, Ontario, Canada on May 30, 2011:
Hi Linder! Please forgive my very late response to your comment but I unfortunately I have been extremely ill the past 2 months and in fact just came out of the hospital after a month. I am only home for a while as I will be needing another surgery..my gallbladder ruptured and because some of my bowel seems to be stuck to it they need to open me up to remove it. Unfortunately because of all my previous surgeries whenever they do open me up, more of my bowel seems to fall apart so they are trying to find a surgeon who is willing and able to attempt it. It seems for now though they are having a hard time finding someone willing to do it.
Enough about that though. I just really wanted to reach out to you and tell you how very sorry I am that you have had to go through all of that. I know how frustrating and infuriating it can be. I'm so glad you reached out to the CCFC community though because it really does help to talk to people who understand what you're going through and Im sure you've found most people to be extremely friendly and helpful. I hope you will count me among those people and feel free to get in touch whenever you like!
I hope you are feeling well, remember to always keep a positive attitude regardless of what's happening with your disease or how bad you happen to feel because it really does make a difference..even in the amount of pain you feel. I will send a prayer your way..God Bless!
Linder553 on March 12, 2011:
WOW! I totally agree with you..i have crohn's disease and have had for two years now. The worst two years of my life. Like you, they could not figure out why i was so sick..i had lost over 40 pounds in 3 months and i was terrified because i thought i was going to die. I have been in and out of the hospital as well to relieve some of my symptoms. I go through the same thing everyday where people are telling me that i look fine and that there is nothing wrong with me and i just feel so alone...no one understands or even tries. I am in so much pain all the time and people assume that i am lazy and i just get so mad and deppressed. I had never heard of this disease before and had never been sick in my life. I recently joined the Crohn's and Collitis Foundation of Canada and met alot of people online who have the disease and it feels great to talk to someone who understands. Hope all is well with you and take care!
enchanted13 (author) from Toronto, Ontario, Canada on September 08, 2010:
Hi Spire! Thanks so much for the info. I haven't actually heard of using Naltrexone that way but will look into it. In any case, I'm so glad to hear you're feeling better! I've recently started taking Remicade for mine. It was originally made for Arthritis but they've been getting good results for people with Crohn's disease. It's actually an infusion, so once a month I go into the hospital where they administer it through an IV. It takes a few hours but it looks promising.
I hope you continue to feel better! Stay positive my friend..it can make all the difference!
spire8989 on September 08, 2010:
I've had Crohn's for 6 or so years and look like I'm 13 now (I'm 20). I had surgery for it a couple years ago and the symptoms started to return at the beginning of this year, that's when I started taking Low Dose Naltrexone... it's a medicine used for drug addictions when used in large quantities. There has been a lot of research recently indicating that small doses can help with Crohn's so I convinced my doctor to give me a prescription and I now take one pill every night before I go to bed.
Since I started taking it I haven't had any problems with my Crohn's and have had zero side effects... just thought I'd mention it, you can google Low Dose Naltrexone Crohn's if you want more info
enchanted13 (author) from Toronto, Ontario, Canada on September 01, 2010:
Thank you secretxx. I'm really sorry to hear that but unfortunately it's not uncommon. It's really hard for most of us to go into remission once the disease is active. For a lot of us the medications just don't work but they are coming out with new meds all the time so tell them to hang in there! Most importantly is the understanding of family and friends so thanks for taking the time to read my hub. They're lucky to have you. :)
secretxx on September 01, 2010:
secretxx on September 01, 2010:
A member of my family has suffered from Crohn's for several years now and it is still not under control. Thanks for this hub, it has really helped me understand that condition better.
enchanted13 (author) from Toronto, Ontario, Canada on July 27, 2010:
Thank you Mary. I appreciate you sharing that and I will be looking into it. Blessings!
Mary Soliel from Colorado on July 25, 2010:
Sending love and prayers for your continued healing and spiritual strength. Because of your faith, I wanted to share with you as well as your readers about this healer from Croatia who heals all kinds of things simply through his gaze. His name is Braco (pronounced "Brahtzo") and you can go to youtube.com and see him in some videos there. Some people experience miraculous healings just by watching him on youtube or by watching one of his dvds, but most definitely by seeing him in person (he gazes at groups at a time and was recently in the states and coming back in the fall). If interested, go to bracoamerica.com or braco.net. Feel free to email me for more information at email@example.com. I just hosted a radio show talking about him with other gazers (marysoliel.com and go to radio show).
enchanted13 (author) from Toronto, Ontario, Canada on July 12, 2010:
Thank you, Loves to Read. I am so sorry to hear about your sister and your nephew-in-law. It's true Crohn's disease is more widely recognized these days which is good, unfortunately that is because more and more people then ever before are getting it now and the number rises every year. I am the only person in my families history to ever get the disease too...that we know of at least. Since it was relitively unknown before, it's hard to know if others had it and it was misdiagnosed or wasn't diagnosed at all. Especially for people like me who are first generation Canadians. My family is from Italy and as they were relatively poor, it's impossible to know if anyone had it before me.
As for your family members, it is hard enough to be newly diagnosed as there is a lot of guilt associated with having a chronic illness. I have always said that the hardest thing about having the disease is not the excrutiating pain that accompanies it but how it affects those around you who love you. Even though I know I have nothing to feel guilty about, I will never forget the worry and anguish I have caused my family every time I've had to go into the hospital, etc. It's important that you try to always stay positive when around your loved ones who have the disease and to know there's not much they can do to control their symptoms as I mentioned in my hub.
I pray that your loved ones go into remission and stay that way and that you help them to stay positive! I will say a prayer for them both. God bless!
Loves To Read on July 12, 2010:
enchanted13, thank you for this enlightening hub. Crohn's Disease is becoming more widely recognized these days. Sadly it seems to attack younger people. I don't know what causes it but my youngest sister was diagnosed with it last year. She had suffered pain for a number of years and like you no one had any idea what was wrong with her. She lives a long way from me so i don't know a lot about hers. I do know that they were trying to control it with diet but like yourself, she knows what she can and can't eat. There is no one anywhere in our History other than her to have this disease.
My niece married a young man who has also recently been diagnosed although i have not discussed it with him.
Thank you for speaking out on this subject as there is no doubt many more people suffering that have yet to be diagnosed and your hub may help others to understand.
May Gods blessings be upon you
enchanted13 (author) from Toronto, Ontario, Canada on July 09, 2010:
Thank you Vaalion. This was important to me and I'm so glad you picked up on that and appreciate your comment. The aging thing is weird but we now know there are over 30 genes involved so maybe some of those genes have something to do with how one ages. I don't know. Mind you, I may look younger then I am but when I am out of remission, I feel as though I'm 100..lol. Thanks again and take care!
vaalion on July 09, 2010:
Wow, I vaguely remember hearing about this disease years ago but never gave it much though. Seems like something really serious and having something that is incurable must be hard to live with at times. Judging by how long your hub is I can see that putting this information out there is something very important to you :P. Very odd that patients apparently look younger, I wonder why! Logically I would think it's the other way around with the body stressing over the damage of its internal organs!