Do you want to see the entries other people submitted from the survey? Here they are.
Note: Entries will not post immediately. Allow one week for it to post.
We now have over 168 entries from people who have taken the survey. There's a lot you can learn from these people. Especially if you are newly diagnosed.
One of the strange facts about Crohn's Disease is how differently it affects different people. There are differences in severity, in how the same food can effect different people differently, and how the same medication can effect different people differently.
The main thing is you are not alone. You're probably going to be like someone who answered the survey.
I also want you to know is that when people answer the first question, they are talking about their worst times and the worst part of their disease. Your reaction and situation can be entirely different.
I've been in remission for a few years now. You might be one of the lucky ones like I am. You never know.
If someone recommends something against the law (it has happened), it will not be included.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The fickle nature of the pain; one day the Crohn's related arthritis is completely gone, and I feel normal. Within a week I'll be unable to even sit up for long periods of time due to the joint and stomach pain." What have you done to help you cope with the disease? "During and immediately after a flare up I try to keep myself distracted. With work, family, or whatever. It's similar to dealing with any other type of chronic pain." What suggestions would you have for people newly diagnosed? "Keep in touch with all of your doctors, and allow them to properly monitor the condition. It will save you a lot of misery in the long run if at the very least you are able to prepare for a flare up. Also remember that the pain medication only masks some of the symptoms. It doesn't improve the condition, and the medicine's effect will weaken while the condition weakens." What do you do to reduce stress in your life? "I'm still working on that one. I try to surround myself with friends, and keep my schedule flexible."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That you can feel absolutely fine one minute, and then 1minute later there had better be a bathroom somewhere near by because I am going to pee out my behind." What have you done to help you cope with the disease? "At first I practiced avoidance, didn’t want to take my medication because it was annoying, I felt fine so why take it... actually didn't take it for almost two years, would rather suffer with diarrhea, but now... I take my medication daily and try to avoid the foods that hurt the most...like lettuce... although I admit I haven’t given it up completely but should." What suggestions would you have for people newly diagnosed? "Follow the diet your doctor gives you, and slowly incorporate other foods back in, things that bother me, may not bother you at all. I know this because I have another family member with Crohns and she can eat lettuce, but I can't... you really have to find out what works for you." What do you do to reduce stress in your life? "Unfortunately I am still working on this one... and let me tell you, it does get worse when I am stressed...I am hoping to find some strategies for coping on this site.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The amount of medication and the frequency of taking it." What have you done to help you cope with the disease? "Changed my diet." What suggestions would you have for people newly diagnosed? "Watch what you eat!!!!" What do you do to reduce stress in your life? "I can't really reduce my stress."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The pain and discomfort." What have you done to help you cope with the disease? "Try to control and monitor my diet." What suggestions would you have for people newly diagnosed? "Study about the disease it will help learn and deal with it." What do you do to reduce stress in your life? "Work on my cars."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The exhaustion that comes with it. Always been very energetic person but now finding myself exhausted most of the time and forcing myself to do anything." What have you done to help you cope with the disease? "I have done the relaxing technique before bed time. A nice soak in a hot tub before bed if only for a few minutes definitely helps." What suggestions would you have for people newly diagnosed? "Get as much information as you can and ask all the questions you can think of. There is still a lot to be learned about the disease." What do you do to reduce stress in your life? "Hot tub soaks and getting regular professional massages help me out the most.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The flare-ups. I can sometimes predict or prepare myself for them but sometimes they can happen for no reason at anytime. It helps to have someone around to help, who understands." What have you done to help you cope with the disease? "Live to play another day." What suggestions would you have for people newly diagnosed? "Don’t let Crohn's control you - you control it. Your choices and lifestyle effect how you feel, Stop complaining and feeling sorry for yourself. You have a chronic disease that isn't going anywhere - so live!!" What do you do to reduce stress in your life? "Don’t freak out that you have to change your entire life or that it will ruin your life - b/c it wont!, Laugh -- find anything that makes you laugh and always resort back to that when you need to.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"All of the hospital stays I have had to do since the age of 13. I am now 22 and still don't have a hold on the disease. What have you done to help you cope with the disease? "I have seen therapist to do biofeedback and taken prescribed meds to help deal better." What suggestions would you have for people newly diagnosed? "Keep your head up high and don't give up because there is hope and a chance to live "normal"." What do you do to reduce stress in your life? "I try to exercise and I have kept a journal since the day I was diagnosed. It helps me get out my frustrations."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How quickly I forgot what the pain felt like (after coming into remission)." What have you done to help you cope with the disease? "Allowed myself to have ""bad"" days...not beating myself up for feeling sick or tired." What suggestions would you have for people newly diagnosed? "Be prepared for any situation and don't let the disease get you down." What do you do to reduce stress in your life? "Listen to music, read, take a hot bath, watch a movie, write in my journal, talk to my loved ones..."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I was diagnosed many years ago, not much was known about the disease. I was surprised to find that at that time no one had heard of it, now it is common place it appears to be on the increase or people just died because no one knew what was wrong. It took nearly 15 years to get my diagnosis." What have you done to help you cope with the disease? "Lived my life as normal as possible, I am in control of myself not the Crohns. I made up my mind that I wasn't going to let this disease control how I lived or where I went. Especially Mexico." What suggestions would you have for people newly diagnosed? "Get a good GI doctor, trust him, watch for food combinations that can set u off. I am allergic to just about all the drugs going, but I have a sneaky kind of Crohns. I will have no symptoms for years and then bang I have an obstruction that lands me in surgery for a resection (3 so far). Last one I lost 25 lbs in 1 week; its taken 2 years to gain it back. So watch for signs that indigestion could be an obstruction." What do you do to reduce stress in your life? "Get up early, deal with my work while I have energy. If I feel tired I say so I take a pass on social occasions if I don't feel up to it. Take food supplements and read a lot..."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I know there are things that I can’t eat now." What have you done to help you cope with the disease? "Take medication, go to doctor appt. and watch what I eat." What suggestions would you have for people newly diagnosed? "Keep going to your doctors appt., they can find things before it's too late." What do you do to reduce stress in your life? "Stay to myself most of the time let everybody worry about there own..."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I think that I was surprised most by how tired I can get in no time. A simple shopping trip is exhausting." What have you done to help you cope with the disease? "I'm not sure that I am coping with it yet, I was only diagnosed about a year ago, and right now I feel more like a lab rat than a person." What suggestions would you have for people newly diagnosed? "Hang in there, slowly it will get easier. It helps if you go to a support group." What do you do to reduce stress in your life? "I try to get as much rest as possible. Sleep as much as I can (mother of 3 boys), use my resources (family!!)."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How little people know about the disease." What have you done to help you cope with the disease? "Try to sleep a lot." What suggestions would you have for people newly diagnosed? "Your life will never be the same What do you do to reduce stress in your life? "I don’t drive or travel far from home."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"No Response." What have you done to help you cope with the disease? "I have cut all know allergens from my diet I eat aloe, take hot bathes, drink a lot of grape juice." What suggestions would you have for people newly diagnosed? "Identify and eliminate any alergins eat aloe, take hot bathes, drink grape juice (This person recommended something against the law. We cannot include that on our website)." What do you do to reduce stress in your life? "I stay home most of the time."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I lost 35 pounds in two months, now I weight 170 pounds." What have you done to help you cope with the disease? "I'm taking Pentasa, and Entocort." What suggestions would you have for people newly diagnosed? "It's not the end of the world, hope has not ended. There is medication out there that is wonderful, and certain medication that your body is not comfortable with." What do you do to reduce stress in your life? "I now listen to Classical music and relax for a bit, it really helps in the long run."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The thing that has surprised me the most about this disease are the extra things CD causes like Arthritis, skin problems, eye problems, infections etc. Also all the medications that you have to take." What have you done to help you cope with the disease? "Take my meds as the doctor has prescribed, probiotics, keep hydrated, eating right, taking vitamins, watching stress levels." What suggestions would you have for people newly diagnosed? "Read about Crohns as much as you can, personal stories online are a big help and sometimes inspiring and keeping positive. Just because we have this disease don't mean it’s the end of the world, we just need to live a little differently and appreciate what we have in life." What do you do to reduce stress in your life? "I personally try and keep busy with friends and my kids, keep up hobbies that I enjoy and try not to let the disease run my life."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I was diagnosed almost 20 years ago. What ""surprises""(frustrates) me the most is that it can show up at anytime, anywhere with so many variances of symptoms. Right when I think I have a handle on my Crohn's, it flares up in another way...from obstructions to abscesses to malnutrition and anemia." What have you done to help you cope with the disease? "Supportive husband, family, prayer and a good relationship with my doctors." What suggestions would you have for people newly diagnosed? "Find good doctors/surgeons who will work with you AND each other. You could spend hours gathering information, but I feel that this is a waste of time. You are an individual, unique and your body works like no other...knowing that helps you realize that Crohn's will be different for you too." What do you do to reduce stress in your life? "Lean on family. Don't stretch yourself too thin. Listen to your family. Prayers!!!"
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I was diagnosed with Crohn's a few months ago so I’m still trying to find more info on it but so far the most surprising thing is the fatigue and just how quickly you can become sick if you eat the wrong foods etc." What have you done to help you cope with the disease? "I’m finding out more info day after day and I have a very good doc. I’ve made a list of foods that haven’t agreed with me in the past." What suggestions would you have for people newly diagnosed? "Get information asap and you have to accept it, the sooner the better." What do you do to reduce stress in your life? "Listen to music mostly and take time to just chill. Also I know to always get my sleep."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Joint pain, and tired feeling." What have you done to help you cope with the disease? "Take meds, try to adjust diet and live life like I do not have it." What suggestions would you have for people newly diagnosed? Rresearch, and find other people with the disease." What do you do to reduce stress in your life? "Play basketball."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The stigma attached to the disease. I feel that most doctors think that most crohn's patients are drug addicts (or addicted to their pain meds)." What have you done to help you cope with the disease? "I have tried to maintain as normal a life as you can have with crohn's." What suggestions would you have for people newly diagnosed? "Don’t give up on life, fight the illness and live." What do you do to reduce stress in your life? "Listen to music, meditate, take long baths, read and talk to GOD."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"What surprised me the most about crohn's is the ongoing battle. You deal with one problem. Then you wind up getting a different one later on." What have you done to help you cope with the disease? "I don't know that I've really done anything. It's all how you look at it I guess. I was very young when I was first diagnosed and it's just been a way of life for me. I have been very frustrated and stressed out at times because of it but I try not to let it get to me." What suggestions would you have for people newly diagnosed? "My suggestion for people just newly diagnosed would be: It's gonna be a long road ahead try to remember you're in control of your life not the disease. It will be extremely frustrating at times but you need to live your life to. Don't let it hold you back from doing things you want to do. Just be careful." What do you do to reduce stress in your life? "Well I like reading, watching movies, spending time on my own all of that relaxes me. Listening to music also helps."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The fact that I can’t leave the house in the mornings without using the toilet at least twice but now accept that that’s the way I am." What have you done to help you cope with the disease? "During a flare up accept all the help you can and ask if you don’t get offers during remission try to stay positive and stress free." What suggestions would you have for people newly diagnosed? "Don’t get frightened by other peoples symptoms. Not everyone is the same," What do you do to reduce stress in your life? "Work part time because I have small child couldn’t possibly manage to do both if I’m tired and the house needs cleaning stuff it!"
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The ignorance and hurtful things that people think and exhibit towards this debilitating disease (especially my ignorant in-laws)." What have you done to help you cope with the disease? "I try to stay as positive as humanly possible by exercising when I can. Eating properly and getting ample rest and relaxation." What suggestions would you have for people newly diagnosed? "Stay INFORMED!!!! about the disease your body and be cautious in taking everything that your GI says as 'gospel' truth," What do you do to reduce stress in your life? "I light candles, take long bubble baths and listen to music."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I am an emotional wreck." What have you done to help you cope with the disease? "I am compliant with my treatments." What suggestions would you have for people newly diagnosed? "Get as much info as possible." What do you do to reduce stress in your life? "Talk with others."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I was most surprised by how most people assume that since you don't appear sick you must be faking." What have you done to help you cope with the disease? "Prayer and meditation." What suggestions would you have for people newly diagnosed? "Find an outlet, whether you write, sing, dance...etc. You need something to use to vent when times get rough. Renew your faith in yourself and GOD." What do you do to reduce stress in your life? "Listen to soft music, meditate, use aromatherapy."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The pain and the way society sees you." What have you done to help you cope with the disease? "Changed my family life to accommodate the disease." What suggestions would you have for people newly diagnosed? "Listen carefully to your doctors, research on the subject as sometimes other peoples experience coping with the disease helps." What do you do to reduce stress in your life? Read, go for walks when I can. Unfortunately I had to resign from my career of 20 something years as a experienced theatre nurse last year (2004) as things became more difficult. I now try to meditate and take things a little slower
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The frequent bowel movements, at least eight to nine a day. The blood in the bowel movements and the fatigue." What have you done to help you cope with the disease? "I have tried to eat differently and also I quit smoking." What suggestions would you have for people newly diagnosed? "Get a good GI specialist." |
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The weight loss." What have you done to help you cope with the disease? "I was hospitalized and put on hyperal and lipids." What suggestions would you have for people newly diagnosed? "Don't slack when it comes to taking your meds." What do you do to reduce stress in your life? "Just try and stay out of stressful situations."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That I have to wear a colostomy bag but I trust in the lord that it will one day be removed." What have you done to help you cope with the disease? "I try to continue my life as it was before I was diagnosed." What suggestions would you have for people newly diagnosed? "Go to support groups and just pray and continue life as it was." What do you do to reduce stress in your life? "ily life but if it permits I just pray."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The pain. I'll be going along fine, then all of a sudden...between work school and everything going on...my body's like...whoa...slow down...and I get so sick I can’t walk, move, eat or anything for a day. Then my body will just leave me alone for another few months." What have you done to help you cope with the disease? "Not a whole lot, I pray about it now and then, but there isn't really much I can do." What suggestions would you have for people newly diagnosed? "Be very honest with your doctor, they are there to help." What do you do to reduce stress in your life? "Nothing."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Severe pain and emotional/physical stress." What have you done to help you cope with the disease? "Talk about it to other crohns patients. Research the disease." What suggestions would you have for people newly diagnosed? "Don’t be afraid to talk about it and talk about all medications." What do you do to reduce stress in your life? "I take a anti-depressant pill daily prescribed by my doctor."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The blood in my stool surprised me a lot." What have you done to help you cope with the disease? "I play basketball so I stay active and I take my medicines as prescribed." What suggestions would you have for people newly diagnosed? "Pray and try not to worry yourself about it." What do you do to reduce stress in your life? "Read books, hear other people stories and pray to live a better life."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The constant unknown of when Crohn's will strike me next." What have you done to help you cope with the disease? "Eat right, by making a list of things that bothered me, and then checking to see if, indeed, it was that food that caused the problems. I've also taken time for myself much more often...long overdue." What suggestions would you have for people newly diagnosed? "Talk freely with your GI and any support people you have." What do you do to reduce stress in your life? "Work hard at my office job while others are not around that cause me stress."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How it can affect your life, for me its the abdominal pain and joint stiffness. Stress also has a BIG impact on my situation." What have you done to help you cope with the disease? "I have a SUPER doctor who is up on all the latest info regarding Crohns. Watch what you eat, keep a diary on what you have problems with." What suggestions would you have for people newly diagnosed? "Accept it and deal with it right away. Find a good Dr/GI. It's a battle, but you can get the upper hand on it by dealing with it head on and early. Read all you can, there is a lot of good reference info on the Web. Also join the CCFA, Crohns Colitis Foundation of America." What do you do to reduce stress in your life? "I had to learn to say ""NO"" to many things. Stress had a great impact on my situation. I have a stressful job, and had to cut back at work. They have been very supportive. I'm very thankful. My wife has been AWESOME, she's been there for me thru it all, and is still my biggest supporter.."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How tired and generally unwell I feel as well as the abdominal pain. Both my parents have Crohns so I was aware of what to expect and was pretty sure I had it even before I was diagnosed 2 weeks ago. But my lack of energy or motivation is a major factor for me at the moment." What have you done to help you cope with the disease? "I started treatment last week which includes a period of steroids. I've also adapted my diet to be generally more sensible and cut out alcohol, curries etc. I'm planning to start a journal of my diet, pain etc so that I can pick upon what aggravates me the most." What suggestions would you have for people newly diagnosed? "As I am newly diagnosed I haven't much advice yet. I'm just trying to find out as much as I can about it. I don't like taking drugs so am interested in alternative methods of treatment and management." What do you do to reduce stress in your life? "Get enough sleep! If I don't I'm exhausted the next day which makes dealing with the crohns so much harder."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How long it took to diagnose." What have you done to help you cope with the disease? "Live day by day." What suggestions would you have for people newly diagnosed? "Find good drs who can control the disease to the best of their capabilities." What do you do to reduce stress in your life? "That's hard to do, but I make time for myself."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Nothing really, I knew something was wrong with my stomach for about 6 years before I was actually diagnosed. I think that the way my stool frequently change all the time is a bit strange, but in time you get used to everything about it as it becomes normal to you." What have you done to help you cope with the disease? "I was prescribed Prednisolone and Mesalazine by the hospital. I now take a multivitamin as I feel I may lack in certain vitamins due to my funny digestion and it does make you feel better, it stopped the shakes I used to get too from a possible lack of vit B." What suggestions would you have for people newly diagnosed? "Don’t worry!! A lot of people get this, even though it may sound horrible, everyone can manage to control their symptoms. It's a case of working out what is best for you, ie, diet, stress, managing pain with hot water bottles, peppermint teas etc." What do you do to reduce stress in your life? "I used to be very stressed, but you just need to look at what is REALLY stressing you out and what just annoys you making you think you are stressed. Evaluate why things stress you out. I go swimming as it is really calming, gives you chance to think about what ever you want and will take your mind off things."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I was surprised the most that I’m still no better of then before diagnosed." What have you done to help you cope with the disease? "I have found that smoking marijuana in the evenings helps to relax and also it makes me hungry which helps me to maintain my weight." What suggestions would you have for people newly diagnosed? "Don’t let it eat you up just go with it and try to find ways which you can make your self comfortable and happy. Read as much info so you understand what your body is doing and it helps knowing what’s causing the pain." What do you do to reduce stress in your life? "My life is very stressful and for me to remove stress would mean walking away from everything, which I’m not going to do so I try meditation."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Inability to control the diarrhea, several times I have been unable to get to a washroom in time. I was in the midst of an attack and was refused permission to use a store washroom which resulted in soiling myself. Very embarrassing!! Pain in the abdomen. Suddenness and rapidity of attacks!" What have you done to help you cope with the disease? "I have been eating smaller but more frequent meals. I have always been a healthy eater and am not overweight. I exercise daily and walk 3-4 X weekly. I am taking Imodium especially when I will be eating out. Am still thinking about other meds." What suggestions would you have for people newly diagnosed? "Get a good GI doc. If (he-she) doesn't talk to you, get someone who will." What do you do to reduce stress in your life? "Deep breathing."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That most people do not understand how dehabilitating this disease is." What have you done to help you cope with the disease? "I have a great support team in my wife and family. Since we are a close family they have seen what Crohns has done to me up close and personal, and assist me in any way possible." What suggestions would you have for people newly diagnosed? "Get more than 2 opinions and diagnosis. Do not just accept what a doctor tells you. Do the research. I have found that doctors take very different views on treatment etc...of this disease." What do you do to reduce stress in your life? "Anything that can get me out of the house and still feel comfortable about my condition. NEVER apologize for your condition or feel inferior because it is a ""personal""illness and educate those around you, (say at work) so everyone is on common ground."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"At the time I was diagnosed I thought it was a rare disease. As I got older I realized a lot of people have it, and that gave the confidence to discuss it with others. It helps to talk to people who know someone else who has this, because they seem to understand and want to help." What have you done to help you cope with the disease? "I learned to accept the fact that I have it. No crying or complaining can rid me of it. So accepting it is all I can do." What suggestions would you have for people newly diagnosed? "Talk, talk, talk. When you keep your feelings inside about being sick you are only hurting yourself more. My crohn's is fueled by stress. An keeping things to yourself is stressful. Don't be afraid to tell people that you are sick, people are more understanding than you think. In high school stressed myself out trying to keep crohn's a secret from my classmates. Once they found out my secret, the burden was lifted and I actually had an entire group of people, who weren't my immediate family, looking out for me and constantly making sure I felt okay!" What do you do to reduce stress in your life? "I keep a journal and talk to my friends and family about anything that bothers me. I'm learning to let little problems go, because they cause unnecessary stress."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I am surprised the most about how I feel now that I am in remission!" What have you done to help you cope with the disease? "I watch what I eat! I don't live off salads and corn on the cob in the warm weather anymore. I take long baths to help with the arthritis and stomach aches. You could say I have slowed my pace a little. I take time for long baths and I take the time to prepare healthy complete meals." What suggestions would you have for people newly diagnosed? "Don't let this disease control your life! Find what foods, etc work for you. Don't stress over it, work with it." What do you do to reduce stress in your life? "Since diagnosed, I don't let the little things bother me anymore. It's not worth the side effects. I take everything in stride. I stop to think about what all the stress will do to me and I realize the pain is not worth whatever situations stressing me out."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I am not as energetic as I used to be. A lot of things depress me more easily. I'm not a got getter anymore. I've built a wall around myself where as everything about me and my disease is a secret I don't want anyone to learn about my disease because it tells to much about me personally. I lose my temper 99% of the time. What comes up, comes out regardless of who feelings get hurt. I find I have no patience what so ever." What have you done to help you cope with the disease? "I have not really found a solution except to think of something that made me laugh or a good time I had before but most of the time I just isolate myself from the outside world and stay at my house alone." What suggestions would you have for people newly diagnosed? "Get on the internet and find out everything you need to know because you maybe having a problem and the doctor want to treat it as something else when it may only be a sign that your crohns is acting up. You can learn more than what your doctor may know because they are just learning just like you. Do not become a Ginny pig and let them experiment on you. It's always good to have a second opinion." What do you do to reduce stress in your life? "I stay away from people or surroundings that upset me or only have negative things to say. You don't need negativity in your life at all. Stay around more positive and productive people."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"THE WEIGHT LOSS, THE PERIANNAL DISEASE (THE SMELL AND DISCHARGE) THE DIARHEA, THE DEPRESSION." What have you done to help you cope with the disease? "I HAVE HAD MAJOR SURGERY NOW, BUT I TOOK MY TABLETS, MY DISEASE DIDN'T IMPROVE." What suggestions would you have for people newly diagnosed? "FIND A DECENT SYMPOTHETIC DOCTOR OR COUNCELLOR AND TAKE YOUR MEDICATION." What do you do to reduce stress in your life? "SLEEP."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"HOW TIRED IT MAKES ME AND HOW MOST PEOPLE DO NOT EVEN HAVE ACLUE AS TO WHAT CROHNS IS." What have you done to help you cope with the disease? "I TRY HARD EVERY DAY TO ELEVIATE STRESS." What suggestions would you have for people newly diagnosed? "TRY TO FIND OTHER ALTERNATIVES TO MEDICATIONS. BECAUSE THE MEDICATIONS HAVE THEIR OWN SIDE EFFECTS AND YOU WILL ALREADY HAVE ENOUGH TO DEAL WITH." What do you do to reduce stress in your life? "I TRY NOT TO LET LITTLE THINGS GET TO ME SO MUCH ANYMORE."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The pain." What have you done to help you cope with the disease? "Keep up with my medication, and stay away from the foods that can give me a flare-up." What suggestions would you have for people newly diagnosed? "Watch what you eat, and try to have as little stress as possible when you do have a flare-up." What do you do to reduce stress in your life? "I take a hot bath and it helps with the pain.Try to get more rest."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"What surprised me the most that I find out that my great grandmother had it when she was 80 just before she died." What have you done to help you cope with the disease? "Well I’ve not cope with it yet cause I am in 10 and I’ve not been at school for ages cause of it so I think I am not going to pass year 10." What suggestions would you have for people newly diagnosed? "Well my suggestion to people with this is that its never going to go away you are stuck with it for good. Even if you get surgery you would be stack with a scare for the rest of your life. And its hard when you are young especially year 10." What do you do to reduce stress in your life? "It's hard at the moment cause I am only 16 years old."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The quickness that it can come and go I have had it for more then half my life. Also how one time I can eat a certain food and another time it will hurt me." What have you done to help you cope with the disease? "Watch what I eat. Keep my stress as low as possible." What suggestions would you have for people newly diagnosed? "KEEP AWAY FROM DR. THAT JUST WANT TO GIVE YOU PILLS, talk to people. Join support groups. And know that you are not alone." What do you do to reduce stress in your life? "I talk a lot about what is bothering me. Also if I get really stressed I write letters that will never be mailed to get out what I am feeling."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The perennial abscess that formed and needed to get operated on when I was 21 years of age." What have you done to help you cope with the disease? "After a 13 hour day at work, I make sure I have at least an hour to relax on my couch and watch tv.." What suggestions would you have for people newly diagnosed? "Become very aware of what medications you are on and keep a journal. I started a journal late in the game and it gets confusing seeing my gastro and primary." What do you do to reduce stress in your life? "An hour a night before you go to sleep to unwind works wonders."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I can't eat certain foods that I used to eat." What have you done to help you cope with the disease? "I sleep almost all day to wear off the pain and take medications and patches. I also played The Sims2 to keep my mind busy." What suggestions would you have for people newly diagnosed? "Find something that really interests you like a book, a videogame, or listen to music." What do you do to reduce stress in your life? "I listen to soft music until it puts me to sleep."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That I feel so out of control with everything that happens the lack of sleep, the emotional stress and the weight loss. it would be the perfect weapon in war." What have you done to help you cope with the disease? "To try and find an answer." What suggestions would you have for people newly diagnosed? "I feel comfort in knowledge of my disease and every step how I can beat it, knowledge because we fear things that we can't control or that we don’t know anything about. knowledge gives you power. And you feel powerless when you have crohns." What do you do to reduce stress in your life? "I take every day as it comes and worship my family giving thanks that I have them. but you still every now and then get stressed and who can blame us. Sonia."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That the Doctors had not given me any information about the disease and the hospital had no suggestions on what to or not to eat, even when I would speak to a nutritionist." What have you done to help you cope with the disease? "Research different books and tried different healing herbs and vitamins." What suggestions would you have for people newly diagnosed? "That it is difficult at first, but to get to know what foods make you sick or cause pain, keep a journal, don't give up, in time you can feel better, do not take your pain out on others they maybe the one to help you along the way." What do you do to reduce stress in your life? "Meditate, sing, pray and do things that makes me happy (walk alone the beach, paint) SMILE ALL THE TIME EVEN WHEN IN PAIN sometimes that help/get a message (wonderful)."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The extreme fatigue, rapid weight loss and how much it alters your life." What have you done to help you cope with the disease? "Trying to sleep more, not be stressed, and take lots of medication.." What suggestions would you have for people newly diagnosed? "Try not to get stressed out over anything, and see your doctor quickly when noticing your condition worsening." What do you do to reduce stress in your life? "Don't listen to negative, shallow, and mean people. Try to eat at regular times, and get plenty of sleep."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"With me, my condition developed almost instantly and severely it was however 2 months before I was diagnosed with confirmed Crohn's. The part of my Disease that surprised me the most is the uncontrolled bowel spasms for no apparent reason." What have you done to help you cope with the disease? "I have started Meditating and looking after what I eat and my own well being." What suggestions would you have for people newly diagnosed? "Read everything and anything you can for and about your disease. Doctors give you a limited view about the consequences of having the disease, but for a person living with it, what the doctor says is only a drop in the bucket." What do you do to reduce stress in your life? "I leave work at work and relax at home. Take time for yourself every day. I also have a cat, I feel that talking about what is stressing me calms me down, what is where the cat comes in. I talk to her, she can't talk back... Well actually she does, but I don't understand her. Once things are out in the open it's easier to relax and calm your mind."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Fatigue, the need for increased sleep, needing 8 hours per night, anything less and my body feels weak and not able to cope with a full days work." What have you done to help you cope with the disease? "Exercise has helped greatly, I go to the gym 3 times a week, I row for 15 minutes and Stairmaster for 15 minutes then do free weights and I have been in remission for over a year. Also drinking wheat grass daily and avoiding heavy foods like pasta, rice, spices. Most of all avoiding stress, having amore carefree attitude so as not to overload the system with the toxins of daily life." What suggestions would you have for people newly diagnosed? "Listen to your body; it does give off signs as to what your body accepts food wise and what it disagrees with. Limit stress, get plenty of sleep. Drink wheat grass and find out about alternative therapy don't just accept the steroid route! Learn as much as possible about Crohns." What do you do to reduce stress in your life? "Not allow everything or one that upsets me in, 'water off a ducks back' is a good attitude to have, if you cant change something why stress about it. I also find the gym, walking, meditation, yoga also help, plus goes without saying lots of sleep at least 8 hours a night if you can."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"HOW TIRED YOU ARE AND THAT GOING TO THE BATHROOM SEVERAL TIMES A DAY IS THE WAY IT IS. FAMILY AND FRIENDS DON'T UNDERSTAND HOW YOU FEEL AND THE UNANSWERED QUESTIONS. THE DOCTORS SAY WE DON'T KNOW MUCH ABOUT CROHN'S. HA." What have you done to help you cope with the disease? "MEDICATION SUCH AS PENTASA, ZOLOFT AND SOME KIND OF ANTIBOTIC." What suggestions would you have for people newly diagnosed? "I TOO AM NEWLY DIAGNOSED JUST 3 MONTHS AGO. JUST BE PATIENTAND PRAY THAT YOU GO INTO REMISSION." What do you do to reduce stress in your life? "ZOLOFT HAS HELPED WITH THE SLEEP AND ANXIETY THAT I FELT. TRY TO SLOW DOWN AT THE WORK ONLY WORK THE HOURS THAT I AM REQUIRED INSTEAD OF SEVERAL HOURS OF OVERTIME."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The quickness that it can come and go I have had it for more then half my life. Also how one time I can eat a certain food and another time it will hurt me." What have you done to help you cope with the disease? "Watch what I eat. Keep my stress as low as possible." What suggestions would you have for people newly diagnosed? "KEEP AWAY FROM DR. THAT JUST WANT TO GIVE YOU PILLS, talk to people. Join support groups. And know that you are not alone." What do you do to reduce stress in your life? "I talk a lot about what is bothering me. Also if I get really stressed I write letters that will never be mailed to get out what I am feeling."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Fatigue, the need for increased sleep, needing 8 hours per night, anything less and my body feels weak and not able to cope with a full day's work." What have you done to help you cope with the disease? "Exercise has helped greatly, I go to the gym 3 times a week, I row for 15 minutes and stairmaster for 15 minutes then do free weights and I have been in remission for over a year. Also drinking wheat grass daily and avoiding heavy foods like pasta, rice, spices. Most of all avoiding stress, having amore carefree attitude so as not to overload the system with the toxins of daily life." What suggestions would you have for people newly diagnosed? "Listen to your body; it does give off signs as to what your body accepts food wise and what it disagrees with. Limit stress, get plenty of sleep. Drink wheat grass and find out about alternative therapy don't just accept the steroid route! Learn as much as possible about Crohns." What do you do to reduce stress in your life? "Not allow everything or one that upsets me in, 'water off a ducks back' is a good attitude to have, if you cant change something why stress about it. I also find the gym, walking, meditation, yoga also help, plus goes without saying lots of sleep at least 8 hours a night if you can."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I was most surprised at how much having Crohn's Disease has made me a stronger person, and has changed my outlook on life." What have you done to help you cope with the disease? "I talk to other patients on the internet. It helps to know that I am not alone." What suggestions would you have for people newly diagnosed? "Don't bury your emotions about having this disease. Holding it in only makes it get worse over time. You will have to deal with your feelings eventually. Listen to your body. It's usually right. Listen to your doctors. They're usually right too. Try to find the humor in this disease. Believe it or not, it provides plenty of opportunities! Don't be afraid to ask your doctor questions until you understand what s/he is saying." What do you do to reduce stress in your life? "Color."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The pain prior to my colon being removed and me having stoma." What have you done to help you cope with the disease? "Tried to keep positive and share my feelings and cry when I need to having good sense of humor is important..." What suggestions would you have for people newly diagnosed? "Try and get as much understanding and support as you can to understand what is happening to you and what options are open for you." What do you do to reduce stress in your life? "Listen to my body and communicate with friends family so they understand that when I say I need to rest they fully understand...."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How tired I am." What have you done to help you cope with the disease? "Talk to my mom a lot." What suggestions would you have for people newly diagnosed? "Talking about it helps make people understand the disease." What do you do to reduce stress in your life? "Work out at the gym, problem solve, don’t let things that bother you pile up. I joke around a lot."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Just the whole thing has surprised me. I think a lot of things I eat surprised me and things I drink. my life has changed. Now everyone is different but on certain days I can't eat things. And SOMETIMES it bothers me to drink." What have you done to help you cope with the disease? "If I was giving anyone advice I really would take it easy on drinking. I have test done and see my doctor regularly. I’m not on medication right now because I’m allergic to every thing I take. I did at first but not any more." What suggestions would you have for people newly diagnosed? "Write down what you eat and if it bothers you take it away for awhile. Just eat what you can, if it does bother you then just wait and don't let people tell you don't eat this or don't do this. WITH CROHN'S EVEYONE IS DIFFERENT." What do you do to reduce stress in your life? "I can't give anything on this department, I stink at this. But I’m working on it."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"9 years ago I was diagnosed and have had 3 bouts. The Arthritis brought on is surprising." What have you done to help you cope with the disease? "Surround myself with good people." What suggestions would you have for people newly diagnosed? "If you have to get one disease in your life be thankful it's only crohns. You will now change your lifestyle to being very health conscious." What do you do to reduce stress in your life? "Talk about it."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"It hits when you least expect it." What have you done to help you cope with the disease? "Research, research, and more research." What suggestions would you have for people newly diagnosed? "Don't panic. Take one day at a time." What do you do to reduce stress in your life? "If nobody is going to die from it, let it go. Tomorrow is a brand new day."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Fatigue, joint pain and other peoples unwillingness to understand." What have you done to help you cope with the disease? "Made some amazing friends on the net and started up a meetup group." What suggestions would you have for people newly diagnosed? "Take your time learning what is right for you, just because it works for one person, doesn’t mean it will for you or vice versa don’t over learn in the 1st few weeks, this can be more stressful than it is worth." What do you do to reduce stress in your life? "Walk away and put myself 1st keep away from stress when ever possible."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How many folks know someone who has it. Also how kind and understanding people can be once they understand what's going on...don't be afraid to be honest...and you can be honest without grossing people out!" What have you done to help you cope with the disease? "Changed my diet and accepted the fact that I can no longer"pig out"! I'm a vegetarian; now I have to steam just about everything." What suggestions would you have for people newly diagnosed? "Watch your diet and determine what your food triggers are; find some way to reduce stress and USE IT!" What do you do to reduce stress in your life? "I just finished a 10-week Mindfulness Meditation class a tour local community college. I'm not as dedicated to the practice as I'd like to be but I definitely learned some new coping skills."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How I can't eat the foods I love." What have you done to help you cope with the disease? "Stay away from the food I can't have and try to remember to take my medication." What suggestions would you have for people newly diagnosed? "Talk to other people with it." What do you do to reduce stress in your life? "Nothing."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Not being able to eat." What have you done to help you cope with the disease? "Change my diet." What suggestions would you have for people newly diagnosed? "I don’t know." What do you do to reduce stress in your life? "Read."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How tired I am, plus how much the steroids screwed up my metabolism and made me gain an enormous amount of weight." What have you done to help you cope with the disease? "Just keep plowing through it...ignoring it as much as I can and only dealing with it when the symptoms interfere with my life." What suggestions would you have for people newly diagnosed? "Don't let it stop you from doing what you want. Even though I have gained a ton of weight from the steroids and even though I have constant exhaustion...I still ride competition horses in reining, work full time as a programmer and travel to horse shows. I have moderate to severe Crohn's so I know how scary it can be. Just don't let it take over your life. I think of it has no more important than having brown hair. It's a part of my body that won't go away...so I ignore it as much as possible. :)" What do you do to reduce stress in your life? "Ride my horse, spend time with my husband, play video games and just relax with a good book."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"When I was first diagnosed I was surprised by how many bowel movements I was having, in 1997 I had my 1st surgery and I have had crohn's for 12 years and I am surprised by how many surgeries I have had, 3 all together, and flare ups surprise me the most cause one day I feel wonderful and few hours later a flare up comes on without any signs at all." What have you done to help you cope with the disease? "I have been to mental health a few times because I have anger outbursts and at times I have no clue what made me mad, I talked to my doctor and he put me on paxil but I quit taking it.. shhh." What suggestions would you have for people newly diagnosed? "No matter tired you get from going to your doctor and taking your medicine remember that crohn's gets a whole lot worse without the doc and the meds. Take that from experience.. also no matter how much you wanna go out and party with you friends keep in mind the more you drink(I prefer none) the worse you will 10 times worse the next day.. you have to take care of yourself.. cause no one else will.." What do you do to reduce stress in your life? "Well to be honest I don’t do anything to control mine but there comes a time in everyone’s life when they realize there are certain things that need to be done in order to maintain a long healthy life. We already have a disease that stresses us out and nothing we can do about that until we take care of our daily struggles that cause more stress."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That I don't have the normal symptoms." What have you done to help you cope with the disease? "Nothing." What suggestions would you have for people newly diagnosed? "Hang in there." What do you do to reduce stress in your life? "Work."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Messy." What have you done to help you cope with the disease? "Changed diet, geared down stress and take medications." What suggestions would you have for people newly diagnosed? "Get educated with newsletters and join a support group with others." What do you do to reduce stress in your life? "Stay away from high gear people."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How people don't understand Crohns and how it can affect your life. I’ve also learnt not to be thinking 'y me?', because I'm lucky I don't have something worse." What have you done to help you cope with the disease? "When I was first diagnosed I researched Crohns a lot, and spoke to people who have it. It really helps to talk to people who have it." What suggestions would you have for people newly diagnosed? "To research a lot! Find out as much as you can and talk to people who have it." What do you do to reduce stress in your life? "Go for walks and talk to people."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"There were many things that surprised me, one being how amazingly supportive both family and friends have been. I thought at first that people would look at me differently and wouldn't want to come near me because I had a disease, how wrong I was. I was also surprised at how well I coped with it. I thought at first, like most people who are diagnosed that it would stop me from living my life to the full, and although it does affect your every day life, you learn to live with it and you must not let it beat it you. Crohn's disease has to learn to live with you, not the other way round." What have you done to help you cope with the disease? "I find that watching my diet helps a great deal i.e. I tend not to eat to much fiber like brown bread and hot or spicy foods are a no no! But everyone’s diet is different, you have to find what agrees with you and what doesn't. Then stay well clear of the things that doesn't, no matter how tempted you are, its not worth it in the end. I also take this drink called 'Aloe Berry Nectar, Cranberry-Apple flavored aloe Vera gel'. It is produced by a company called 'Forever Living Products'. You can only get it over the internet but it does wonders in decreasing the pain and making your life that little bit more comfortable. I would advise anyone with Crohn's to try this. You only need to take 1 tablespoon a day so the bottle last ages!" What suggestions would you have for people newly diagnosed? "First off you have to except that you have this condition and always will. Once you have, your half way there to living your life the way you want it. Secondly, you are going to experience bad days so give yourself a break. Knowing first hand what it feels like, having been diagnosed with crohn's at the tender age of 16, its hard to imagine your life any better than it is already, but trust me it does! It helps a great deal if you talk about this and make your family and friends aware of your condition and how your feeling through leaflets on crohn's you can pick up from your doctor treating you etc. Whatever you do, remember that the feelings are normal for crohn's suffers and if you ever need reassurance then go one websites like this to put your mind at ease." What do you do to reduce stress in your life? "I have to be honest, I do stress out a lot but I’ve always been that way. But I find a good way of reducing my stress is if something is getting me down or I’ve got something on your mind, if I feel I can't talk to someone about it, I write it down. It helps me get all the bad feelings out and helps me forget them for a while. Life is stressful but always remember that nothing is worth getting too stressed over if its going to make you ill. Just take time out to relax and do the things you enjoy. Don't let it beat you. Your an extremely strong person already for getting through the diagnosis and you'll keep on getting stronger."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I have less patience than previously. I am less tolerant which bothers me." What have you done to help you cope with the disease? "Not returned to full time employment - I took up part-timework in the weekends thus elevating stress of babysitters or daycare." What suggestions would you have for people newly diagnosed? "Find out what is important to you - work or family. I had to go through this - work and an extra income went out the door it was no longer an option." What do you do to reduce stress in your life? "Quit work altogether - I don't think the stress of not being a family out ways the need to pay the bills."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I was and still am surprised at how many people have this disease or know someone who has it. Since it is not a disease that is pleasant to talk about, most people suffer through it alone." What have you done to help you cope with the disease? "I prefer not to take a lot of medication unless absolutely necessary. I do take a multivitamin everyday and to help with stress and anxiety I take 20mg of prozac daily. I also take immodium AD and add benefiber to my food or drink once or twice a day and which helps a lot more than I would have ever thought it would. I feel the best when I eat a low carb diet or at least one high in protein. Drinking a lot of water and avoiding carbonated bev. has made a big difference too. Low impact exercises help (walking at a fast pace or an elliptical machine are my favorites. I am going to start taking an amino acid supplement and doing meditation or pilates to see how that works for me." What suggestions would you have for people newly diagnosed? "I highly recommend finding a physician that deals with crohn's disease often. Also, make sure that you are comfortable with them and able to be open with them. I have a colon rectal surgeon and a gastrointestinal physician. It works well for me to have two opinions and views." What do you do to reduce stress in your life? "I love to use a cross trainer machine (elliptical). I also enjoy taking quiet walks and reading. I am starting to read about daily meditations and I am considering starting a pilates class. Pilates feels so therapeutic for me, I always feel great when I am done."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I think what has surprised me the most is the amount of fatigue I experience." What have you done to help you cope with the disease? "I've learned to listen to what my body is telling me. If I'm tired, I rest, and maybe even cancel plans if I don't feel up to it. I also try to take a walk every day, get outside and get some fresh air and sunshine." What suggestions would you have for people newly diagnosed? "Having Crohn's does not mean you can't lead a normal life, although you will have to learn to make adjustments. I've had Crohn's for over 20 years and still take vacations including backpacking in the mountains, herding cattle from horseback and snorkeling. Educate your friends and family about Crohn's and how it affects you. They'll be much more understanding if the time comes that you have to change or cancel plans..." What do you do to reduce stress in your life? I read, play with my dog, take a daily walk and sometimes just veg in front of the tv.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I'm just so surprised to even have crohn's disease. I've been having problems with my tummy and out of the blue it ends up to be this! What have you done to help you cope with the disease? "Online support groups mostly." What suggestions would you have for people newly diagnosed? "Read as much as you can and learn from other peoples' experiences, listen to soft jazz..." |
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That it is never going to get better and that it is something that is always going to be part of my life." What have you done to help you cope with the disease? "Loved a lot. I have been close to death many times, I never take a day for granted.....I love a lot. I have fun and live in the moment, because it may not be here tomorrow." What suggestions would you have for people newly diagnosed? "Read a lot about the disease. Don't let anyone tell you that your doomed because you have this disease. Help others by sharing your story...Don't be embarrassed of your story, it could help another person cope." What do you do to reduce stress in your life? “Play with my children, my horses, my dog. Love my life, my family, my GOD.”
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"My son was diagnosed with crohns disease when he was seven years old. As far as what surprised him . I would have to tell you what he said to me. Mommy I prayed all the time why is this happen to me. Try being a child and trying to cope with this disease, he still prays all the time. We talk about the disease any time he wants. He has a lot of faith in the lord and puts it in his hands. He joke and sings his trouble away." What have you done to help you cope with the disease? "Take it from a seven year old child .you got to pray, have faith, don’t give up, god’s right there holding your hand. He said I will never leave you, and he never will." What suggestions would you have for people newly diagnosed? "Keep your mind on other people troubles. When your thinking of others, sometimes you are able to escape your own problems. Pray a lot! Cody’s mom.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That I can't stay out that much. I have to be in the bathroom more than I thought I would be." What have you done to help you cope with the disease? "Well, I've had an illeostomy - since then that's helped me out some, but still gets me depressed." What suggestions would you have for people newly diagnosed? "Get into support groups. NO one else knew what I went through until I met others who WENT and were going through it. Read up on the internet about it. Talk to people too...don’t hold in your feelings .
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I have been surprised that most people I talk to about my condition actually know something about the disease (in some vague form) and that they tend to show sympathy. I have also been surprised how much better I feel when I am eating right and maintaining beneficial exercise routines - makes a HUGE difference for me." What have you done to help you cope with the disease? "I have changed my diet to low residue and low fat and no caffeine. I also talk about my condition with certain trusted friends and family - that helps. I post on a couple different websites, both asking questions and offering advice - both are therapeutic for me." What suggestions would you have for people newly diagnosed? "Regardless of what the doctor says when you at your next visit, you are still the same person you were before you walked through the door to the clinic. You still have all the same beautiful and unique qualities inside of you. The disease will effect certain aspects of how you live your life - I will not deny that - but you still retain the talents and abilities that God has blessed you with - even though you may do these things slower and with more trips to the bathroom! There is always hope - even when you need others to show you how to find it - do not hesitate to rely on them - support is vitally important.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Probably the sharp cramps in my stomach." What have you done to help you cope with the disease? "While I faithfully take my meds, I can get rid of the stomach cramping by using a heating pad." What suggestions would you have for people newly diagnosed? "Make a list of foods you THINK have bothered you; then keep referring back to it again and again. You'll soon recognize any food or food groups that give you problems. Let your spouse know how you're doing - he/she will often just be wondering.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Since I was first diagnosed with Crohn's Disease the thing that has surprised me the most is the amount of other people, whom I already know, have the disease as well. When I was diagnosed I had never heard of the disease so it was helpful finding out that I wasn’t the only one with it." What have you done to help you cope with the disease? "I have tried acupuncture, Asacol, Steroids, Homeopathy, meditation and a myriad of pills and herbal supplements." What suggestions would you have for people newly diagnosed? "Stay positive! Stress seems to be a main trigger, along with coffee (for me) so even when it seems impossible, look for the silver lining behind the dark clouds.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I have not been able to get disability." What have you done to help you cope with the disease? "The HealingWell.com Crohn's forum has helped me a lot." What suggestions would you have for people newly diagnosed? "Don't get discouraged, there is a lot to learn, but you will learn it. Remember Crohn's Disease affects everyone differently. What works for one person might not work for you. You need to learn about your own body because sometimes you will know more about something then the Drs because you are living it.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How much stress can affect flare-ups. I knew long before I got diagnosed what was wrong. I never let it bother me that much just took it one day at a time. THEN my relationship became very stressful and wow ended up in the hospital for 5 days with a major flare-up." What have you done to help you cope with the disease? "Today I’m taking my first steps by getting informed about everything I can about crohns. I’m going for surgery in a few days because of scar tissue causing major blockage. Due to stress related flare-ups for the past year." What suggestions would you have for people newly diagnosed? "Get involved, get informed. I got diagnosed 3 years ago and let stress rule my life. And I believe this is why I need surgery now. If I would have started getting informed 3 years ago I may have avoided a lot of the stress, and would not be headed for surgery. DON'T be afraid to seek help with dealing with any aspect of what your going through inside of yourself.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The biggest surprise has been the fatigue. I'm constantly exhausted, my energy comes in spurts. 1 Minute or 1 hour I feel fine, full of life, then I want to drop." What have you done to help you cope with the disease? "I try to eat good, follow my doctors med routine, sleep as much as I can when I feel low. I continue to try to socialize when I can because your morale is very important when you're ill." What suggestions would you have for people newly diagnosed? "Try to continue your life, try to learn as much as you can about the disease. If something doesn't ""feel"" right about what a doctor says,. .don't be afraid to get a second opinion!!!"
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How much I have had to change my lifestyle." What have you done to help you cope with the disease? "I have moved to the country, I do a lot less for other people. I try to explain the disease to people when they ask. I have to work so when I get home at the end of the day, I immediately have a rest before I try to do anything at home. I read a lot about the disease and different ways to cope." What suggestions would you have for people newly diagnosed? "Learn as much as you can about the illness. Try to educate people instead of keeping everything inside. I find people to be more understanding than we give them credit for. REST,REST AND MORE REST WHEN YOU NEED IT. Be aware of the depression and get help for it!! I have found most people with the disease do suffer from depression. Drink lots of water!!!", ."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I felt much better after I was diagnosed. Stress about not knowing what was wrong was really contributing to being sick." What have you done to help you cope with the disease? "I have a wonderful support group of friends in college. I can not thank them enough." What suggestions would you have for people newly diagnosed? "Find out everything you can. However, do not be scared about some of the things you can find on the net. Don't be afraid to call your doctor over any kind of pain you may be experiencing."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The pain and discomfort the multiple surgeries involved and people thinking its all in your head." What have you done to help you cope with the disease? "I am currently taking antidepressants and seeing a Dr.regularly which involves pain control. I have had a ileostomy since 1987. I was dx in 1986 after I switched Dr's (who thought it was all in my head) and by that time my the new Dr. said my insides looked like raw hamburger and there was no choice in the matter I had to have a ileostomy in order to live." What suggestions would you have for people newly diagnosed? "Please make sure your Dr. is taking it seriously before its too late."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That I’ve survived through it all!" What have you done to help you cope with the disease? "Taking medications as prescribed, seeking mental health treatment, avoiding food that I know will be painful during digestion (seeds, peels, high saturated fatty foods, etc)." What suggestions would you have for people newly diagnosed? "If you are depressed as a result of crohn's, it's imperative that you seek help from a mental health therapist."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The control it can sometimes have over my life." What have you done to help you cope with the disease? "Keep a journal." What suggestions would you have for people newly diagnosed? "Eliminate stress and eat healthy."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"My name is Peter. The number of operations I've gone through. A total of 6 or 7 I can't remember how many now." What have you done to help you cope with the disease? "I try to stay in shape and exercise when I'm feeling up to it." What suggestions would you have for people newly diagnosed? "To talk to someone that has Crohn's and to get as much information as they can. When I was diagnosed I didn't know anything and I really had a hard time of it not being able to talk to anyone."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"At age 10, what surprised me the most was all the complication I had just in the 13yrs of dealing with it." What have you done to help you cope with the disease? "Tried to stay positive despite the bad stuff that happens. Remember the times when I had fun and the fun times yet to come." What suggestions would you have for people newly diagnosed? "Take it one day at a time, that is the key."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How hard it is to control it and how doctors really don’t know anything about it." What have you done to help you cope with the disease? "Eat better and well just take care of myself better and also talking to people. I never wanted to talk to anyone but now I love venting about it." What suggestions would you have for people newly diagnosed? "To not freak out. It seems unreal and impossible to control and go on with life but you get used to it and its not so bad anymore.
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