Here you will find advice from others about dealing with
If you are newly diagnosed, the following information will help.
If you are newly diagnosed with Crohn's Disease, wouldn't it be valuable if you could get advice from others on how to deal with the disease? Of course it would. And that's what you get here.
A few of the the people said they were new enough that they couldn't answer that question. But many of the participants did answer.
Let's get started:
Here are the answers given to the question: "What suggestions would you have for people newly diagnosed?"
"Research, research, research..... I didn't know anything about Crohns, knew a couple of people that had the disease and that's all. Now, I have friends with this disease and they have helped me a great deal. Talk to others with Crohns. Family and friends get tired of hearing about your disease no how much they love you."
"Let you family know how serious of a condition this is, you really need a lot of support....especially on the bad days!"
"Find out as much information as possible about your condition and the medication you're taking. Seek support from an IBD group in your area if you would like to talk to others with the same illness."
"Have a sense of humor about bodily functions. Do not hold in gas it is natural and can be funny! Open your mind, listen to you’re body and do not let doctors bully you into taking meds you are not ok with. Having an illness can make you a healthier person it is you’re choice."
"Research as much as you can, read the good and well as the bad. Do not focus as much on the bad though, because all it will do is freak you out. Also, realize that you are not alone and this disease is something a lot of people have. Reach out and join some support groups.!!!!"
"DON'T LIVE FOR THE DISEASE OR ONE DAY AT A TIME. LIVE FOR LIFE!!!!"
"Stay Strong, Have Hope (because their is a lot of hope). Talk to others who have the disease or others you trust about the disease as much as you can. Always know you have the right to say NO to anything a Dr tells you that you are not comfortable doing. Stress has a lot to do with Crohn's pain and flare ups. Try and reduce the stress as much as possible. Read, work out, yoga, hang out with your friends, listen to music, do what you like to do best. Hang in there! There are always good times and bad times with Crohn's!"
"Don't try to deny this disease - it's serious and it can have serious effects unless you treat it properly in time. Do not neglect a flare up, go see a good gi!"
"Educate yourself. The more you know the better!"
"Find out exactly what the disease is and what people are out there to help you. It is also helpful to keep a journal everyday of what you eat, what symptoms you have, and how you are feeling. I would also suggest joining a group. The CCFA is a fantastic organization to join."
"Learn what you need about IBD, but don't let it take over your life. Get as much happiness out of each day as you can. You only get one shot at it so better make the most of it."
"try and get used to it."
"Read up on everything you can about the disease."
"Remicade! It's my miracle drug."
"Hang in there. Don't buy into the theory that what you eat has no impact."
"Hang in there take it one day at a time. Most importantly stay strong and counseling is a plus, it helps."
"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."
"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."
"Be happy! Now you know what is wrong and you can deal with it. It is so much better then not knowing why you are sick."
"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."
"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."
"Find support with those you love, try to make someone smile each day and you will get satisfaction."
"Take note of what you have eaten that may have caused flare-ups. For myself it's citric acid."
"Watch what you eat and go on a liquid diet during a flare up."
"It's only been 1 1/2 year since I have found out so I'm still getting used to it. But I would say don't let it run your life, this is just a part of you, it's not WHO you are."
"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."
"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."
"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.."
"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."
"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."
"Never give up fight with all you have and remember hope it is all we have for now
"Your life is going to change. Learn to accept that as best as possible. Learn all you can. Get support from family, friends, and others. And... as often as possible -- know where a restroom is in case of emergency."
"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."
"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."
"Find a doctor that you can talk to openly and have an open mind when discussing various treatment options."
"Don't let the disease run your life, you manage the disease."
"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."
"Make sure you have a good support system and are able to talk to other people with crohn's so you will have someone who understands what you are going through."
"Join a good chat room...talk to your family and pray."
"Get all the help you can to find out about it. Support from everyone. Don't be afraid to do things go places. Rest when you have to."
"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."
"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."
"Relax, take life slow, there is no reason to let it affect "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)."
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