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Do you want to read more answers to our survey? Here they are.
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I only found out a few months ago, and I still don't feel like anything is wrong with me. But I know I am sick." What have you done to help you cope with the disease? "None yet. I have been looking for books and at the internet. BUT where do I begin." What suggestions would you have for people newly diagnosed? "Yes, please tell me what I can do and find the best information." (You'll need to fill out the contact form on the contact page so I will have your email address to contact you.)
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The instability of the disease. There are times that my disease seems to be in remission and the meds I am taking appear to be effective and then out of no where the disease flairs up. Sometimes it can be due to something I have eaten or stress, other times it appears to have no other viable reason for its reemergence other than it does because it can." What have you done to help you cope with the disease? "I have done a lot of studying, a lot of questioning, and a lot of trial and error to find what is effective and what isn’t with my body. Eating habits have had to change, stress reduction is a big plus and having supportive friends and family makes a big difference. Above all I have no self pity, this is who I am." What suggestions would you have for people newly diagnosed? "Don’t feel like you are alone. This is a battle many, many of us are waging daily and there are so many resources available to us today then years ago when I was first diagnosed. If you face surgeries like I have, then remember that it will be for the better of your body. Above all else cling to God and all his wonder, its amazing how he allows us to learn and grow from our experiences with this disease." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
How well I have done despite this disease." What have you done to help you cope with the disease? "Try to take one day at a time, one step at a time. Eliminated as much unnecessary stress in my life as possible." What suggestions would you have for people newly diagnosed? "Educate yourself about this disease. Learn as many relaxation techniques as possible: deep breathing, self-hypnosis, etc. One day at a time, one problem at a a time. Remember, no matter how bad things may seem at the time, you don't have to look far to find someone who has things much tougher than you to deal with." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
I once was able to control it but now it has been out of my control for a little over a month now." What have you done to help you cope with the disease? "Everything I have done hasn't worked, I've talked to people who have it and I've talked to my husband." What suggestions would you have for people newly diagnosed? "I'm still new to it so I'm really not sure." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The fatigue and lack of concentration even when in remission and the problems I have with most foods." What have you done to help you cope with the disease? "I have acupuncture, watch my diet, have given up sugar and yeast plus other foods, joined support groups which help to deal with stress, started a good news journal." What suggestions would you have for people newly diagnosed? "Eat healthily, reassess your life to reduce stress levels ,try to do things you enjoy, keep in touch with friends, take up Yoga or Tai Chi when you are well enough, know your limits and rest. Treat yourself as you would treat a friend ,look after yourself Janet." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The intensity of the fatigue, that joint pain is connected to crohn’s and nail clubbing." What have you done to help you cope with the disease? "Looking to sites like Healingwell and others, also to local support groups to learn more and meet others who can relate." What suggestions would you have for people newly diagnosed? "Find out as much as possible but try not to let the more severe stories scare you. Learn from them and it will help us to be better prepared." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That I'm so skinny for a maturing person." What have you done to help you cope with the disease? "Talking to friends, spending time with family." What suggestions would you have for people newly diagnosed? "Find support with those you love, try to make someone smile each day and you will get satisfaction." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The lack of control." What have you done to help you cope with the disease? "Tried to change diet, and take medications." What suggestions would you have for people newly diagnosed? "Take note of what you have eaten that may have caused flare-ups. For myself it's citric acid." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"crohn's is a very stubborn disease." What have you done to help you cope with the disease? "Know the signs my body tells me, listen to them and try to take care of my physical and mental needs." What suggestions would you have for people newly diagnosed? "Don’t panic, find what foods work for you, start taking liquid vitamins and give your body lots of rest when it tells you need it. Pay attention to how you are feeling and DO NOT FEEL QUILTY about it.." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I was diagnosed 30 years ago and what has surprised me the most is how much I had done in my life. I was in the Air Force for 4 years, I have backpacked mountains, I have jogged for 25 years, I have a masters degree and am a psychotherapist." What have you done to help you cope with the disease? "Physical exercise, learning, growing, getting and giving support." What suggestions would you have for people newly diagnosed? "Find out about alternative treatment so you don't end up saddled with lots of drugs. exercise as much as possible get and give support understand as much about the disease as possible know you are NOT your disease." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How if your guts are in trouble it affects everything...your body, mind and surroundings." What have you done to help you cope with the disease? "Joined support groups... brought family closer to me, quit a stressful job and got a less stressful one. Allowed people to do things for me." What suggestions would you have for people newly diagnosed? "Keep yourself updated on your disease... through medical reports and such. Join the CCFA. Keep a diary. I keep a daily 'how I'm feeling' diary and it really helps to find patterns for bad days to help avoid them." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"All the medicine that is required to stay in remission." What have you done to help you cope with the disease? "Checked out the internet for message boards and other helpful info." What suggestions would you have for people newly diagnosed? "The more you know about the disease the better off you will be, Read as much info as you can and take your meds even if you are feeling well." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The general lack of knowledge about the disease, among friends, family and even doctors!" What have you done to help you cope with the disease? "I live my life day to day and try not to worry how bad it may get. I was diagnosed after 4 abscesses perforated in my terminal ileum so I don’t think anything will ever be as bad as that cos the docs now know what’s wrong with me." What suggestions would you have for people newly diagnosed? "To empower themselves with as much knowledge as possible about Crohns but not to become obsessed with it, to try lead a normal life as far as possible." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The fact that it is so unpredictable. And the fact if you have to see a doctor a lot of them are not very nice. They question everything you say. Shame on them." What have you done to help you cope with the disease? "My son is my strength, I almost died having him. Intestines burst." What suggestions would you have for people newly diagnosed? "Never give up fight with all you have and remember hope it is all we have for now." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How long it takes before things get better (I was diagnosed 3 weeks ago)." What have you done to help you cope with the disease? "Not much so far." What suggestions would you have for people newly diagnosed? "I am one of those people..." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
Mental aspect, anxiety. What have you done to help you cope with the disease? Diet, yoga, meaditation, therapy. What suggestions would you have for people newly diagnosed? Don't stress |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
Mental aspect, anxiety. What have you done to help you cope with the disease? Diet, yoga, meaditation, therapy. What suggestions would you have for people newly diagnosed? Don't stress |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How many people I've met with Crohn's. I had not met one person before I was diagnosed. Now, quite a few." What have you done to help you cope with the disease? "Learn to handle the stress. Well as good as possible considering I have a chronic disease." What suggestions would you have for people newly diagnosed? "Your life is going to change. Learn to accept that as best as possible. Learn all you can. Get support from family, freinds, and others. And... as often as possible -- know where a restroom is in case of emergency." |
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? MEDICATION, FAMILY SUPPORT,AND A GOOD G.I What suggestions would you have for people newly diagnosed? GET A GOOD G.I. ONE WHO KNOWS THE DISEASE AND UNDERSTANDS. IT MAY TAKE AWHILE TO GET THE RIGHT COMBO OF MEDS THAT WORK FOR YOU. KEEP YOUR HEAD UP AND ALWAYS SPEAK UP TO YOUR DR. |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That I became so debilitated and lost so much weight. Also, I was incontinent quite a few times, and that stressed me the most. Who would choose that? The loss of control which lead to incontinence surprised me." What have you done to help you cope with the disease? "Posted on newsgroups with people who suffer from the same illness." What suggestions would you have for people newly diagnosed? "If you feel you are not receiving good treatment from your doctor, and have doubts about him/her, switch and find yourself a GI doctor you can trust." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That it is a lifetime chronic condition. That was not portrayed initially at diagnosis" What have you done to help you cope with the disease? "Staying informed and helping others stay informed through forums." What suggestions would you have for people newly diagnosed? "Don't let the disease run your life, you manage the disease." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How rapidly a situation can go from good to bad or from bad to worse." What have you done to help you cope with the disease? "Continue to follow all orders and advice from my doctor and make smart decisions in the food selection process." What suggestions would you have for people newly diagnosed? "Find a doctor that you can talk to openly and have an open mind when discussing various treatment options." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"The fatigue I have felt and can not control." What have you done to help you cope with the disease? "I go to a crohns board and hang out reading others posts and seeing that I am not alone in how I feel." What suggestions would you have for people newly diagnosed? "Find a GI that you like and do what he/she says, then try to get on with your life and live each day to the fullest. Organization helps me the most. I would not even be able to cope with life if I was not an organized person." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How long it takes before things get better (I was diagnosed 3 weeks ago)." What have you done to help you cope with the disease? "Not much so far." What suggestions would you have for people newly diagnosed? "I am one of those people..." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Mental aspect and anxiety." What have you done to help you cope with the disease? "Diet, yoga, meditation therapy." What suggestions would you have for people newly diagnosed? "Don’t stress." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"I am surprised with how my body maintains weight." What have you done to help you cope with the disease? "I sleep about 13 hours a day, if I don’t, I am a mess." What suggestions would you have for people newly diagnosed? "Relax, take life slow, there is no reason to let it affect you." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How many different ways it can make me feel like crap!" What have you done to help you cope with the disease? "I have learned to rest when I need it (most of the time), be careful what I eat (most of the time), take meds as prescribed... and be an active participant in my treatment (finding a good doc, communicating with doc, etc)." What suggestions would you have for people newly diagnosed? "Find a good doc...with good people skills and that is experienced with Crohns disease. Get a good support system going...friends, family...therapist if needed. Don't Be afraid to admit depression and treat it (if necessary)." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"the pain and the affect on my family." What have you done to help you cope with the disease? "tried to carry on as normal." What suggestions would you have for people newly diagnosed? "This person is new to Crohn's Disease." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That I have not been in a lot of pain, and I can pretty much control my disease with diet." What have you done to help you cope with the disease? "I watch what I eat, and try to keep stress low." What suggestions would you have for people newly diagnosed? "All cases are different. It is important to look at it from a one day at a time point of view. Lets get through today before we worry about the next day."
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Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"That I had it. None of the real symptoms are mine. You see I have Fibromyalgia and Chronic Fatgue. With them, I have constipation. I was having trouble with some pain and severe gas and my age call for tests." What have you done to help you cope with the disease? "Got on the internet and talked with my family doctor. Gastroman only said I had it, gave me pills and see you in six months. He gave no info as to what it was or what I had to do with already having the other problems. Knowledge is power and the doctor didn't give any. With already working to keep above my other problems, it really put the fear of God in me knowing nothing." |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"Fatigue!! Bucket loads of fatigue. I have trouble doing just about everything that I once considered "normal"." What have you done to help you cope with the disease? "I haven't had the disease long so I am still researching all the ways." What suggestions would you have for people newly diagnosed? "Find someone to help you with the grocery shopping! There is nothing like walking around for an hour, going through the checkout and finding that when you get to the car you're spent!" |
Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?
"How much I have to go to the bathroom and how much it makes others mad." What have you done to help you cope with the disease? "Tried to keep a since of humor. I also started going to therapy. Sometimes it helps just to have someone listen. What suggestions would you have for people newly diagnosed? "Don't be scared because of your age. I started getting symptoms at age 20. I was 23 when they found out it was Crohn’s. I was scared because I was so young. I have learned now that a lot of people my age have this and if they can make it so can I. Also try to keep a since of humor. A smile and a deep breath can go a long way. But most important always remember you are not alone. God is always on your side." |