Do you want to read more answers to our survey? Here they are.








Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How much my life has changed."

What have you done to help you cope with the disease?

"Read about it. Finding websites about it. Found someone else who has it. Talk to her a lot. Came my new friend. Take timeout just for me."

What suggestions would you have for people newly diagnosed?

"Find Websites if you can. Find someone you can talk to when you need to. Take time for you each day."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"My name is Tammy and I was diagnosed 27 years ago (I was 14 years old) and had 3 surgeries before I was 16. I look back and see where I was depressed, withdrawn and voided having close friends. However, I went 20 years "flare-up free" and then had my 4th surgery almost 7 years ago. I find it harder on me as I get older....yes I know all the quick stops and my family and friends know when "I gotta go - I gotta go"......as a teenager I felt like a freak and not normal. However, I have realized it's not uncommon to find someone with Crohn's as they could be setting right next to you and you would never know it. The medical profession is more in tune with this disease and it's treatment."

What have you done to help you cope with the disease?

"I think this disease is more of a "mental state" condition. I do work on avoiding certain foods that gives me a stomach ache and try to be as positive as I can - some days are definitely better than others!!! But the main thing I focus on is that my health could definitely be worse. "This" disease I can live with and I count my blessings I don't have something else....."

What suggestions would you have for people newly diagnosed?

"Live life to the fullest. My doctor didn't think I would ever be able to have kids - which I proved him wrong 3 times. They are by far extremely healthy and now my grandchildren are coming! I have a lot to live for and am determined not to let this disease or any disease take control of my life. Please listen to your body...it's always right!!! Be positive!!"



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The joint pain and all the visits to the doc."

What have you done to help you cope with the disease?

"Its been hard to cope I try not to let it get me down but every time I take my pills I know I have something wrong with me."

What suggestions would you have for people newly diagnosed?

"God only gives people what they can handle."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"I was a GI endoscopy nurse and I knew what it was like. I have had CD for 18 years, and Remicade has improved my life a great deal. The past five years have been very hard, but I have learned a lot this past few months about letting go and letting God. This is difficult to do when you are someone who likes to have things in control. But when it becomes hard you can't control everything and giving up to what you believe, has helped. Look for kind friends, and if you have family who is willing to be supportive, you will be very blessed."

What have you done to help you cope with the disease?

"I found a web site of CD patients and they understand what this is like. It is hard to have a disease that even healthcare workers don't know much about. It is very hard to talk to people who don't want to know about CD. You will find your good friends, and people you feel like you know well because they have a similar life."

What suggestions would you have for people newly diagnosed?

"What we have to fight this now is so much better then even 7years ago. Don't quit, great people are out there looking to help us in research, medicine, and support that I have just started to use and am so glad for that and for the wonderful people I have learned to trust."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How every day is different - the disease has so many symptoms and effects so many people differently."

What have you done to help you cope with the disease?

"Read about it, joined healingwell.com to get support, some alternative therapies."

What suggestions would you have for people newly diagnosed?

"Healingwll.com and a have a good relationship with your doctor."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"That it is manageable."

What have you done to help you cope with the disease?

"Totally changed my lifestyle by eliminating job stress, exercising daily, quit smoking and eating healthy."

What suggestions would you have for people newly diagnosed?

"1) Make sure you like your team of doctors, if not change them.

2) Be honest with your doctors -- nothing will surprise or shock them

3) Do what your doctors asks

4) Take the meds you are prescribed (they won't work if you don't take them)."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"Peoples reaction when they find out I have Crohns."

What have you done to help you cope with the disease?

"Nothing."

What suggestions would you have for people newly diagnosed?

"Its not as bad as people make it out to be you could have something a lot worse."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"That you can feel good one day then crappy for the next week."

What have you done to help you cope with the disease?

"Try new medicines I changed my diet."

What suggestions would you have for people newly diagnosed?

"Try and relax and sleep."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"19 yrs ago. I did not know what Crohns was. But the Dr told me to read everything I could find about it. He said it was better to be smarter than the disease."

What have you done to help you cope with the disease?

"Changed my Diet. No more salads or popcorn."

What suggestions would you have for people newly diagnosed?

"Keep a journal of what foods bother you and eliminate them from your diet."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The relationship of stress and the emotional downsides of the disease coupled with the medications."

What have you done to help you cope with the disease?

"When a flare up does occur, I contact my physician immediately, relax more than usual on a given day, meditate and pray and especially pray that the medication does its work."

What suggestions would you have for people newly diagnosed?

"Get in touch with other people through the internet or through your physician. Educate yourself. Each person has a specific genetic response and will react slightly different to stimuli.. food, stress, fatigue and general frame of mind and physical condition."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How after 20 years of being in remission it can be a part of your life again."

What have you done to help you cope with the disease?

"I never had a problem coping with the disease. Always thought, what will be will be."

What suggestions would you have for people newly diagnosed?

"Listen to your Doctor and do what he/she says."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The varied symptoms no one told me about, from painful skin lesions to the sometimes incredibly painful joints."

What have you done to help you cope with the disease?

"Medications, relaxation techniques, altered diet, better exercise and rest."

What suggestions would you have for people newly diagnosed?

"Don't accept an answer that you don't understand. Ask questions until you get an answer. Keep a record of things in your diet you tolerate and things that you do not.... As all of us are different there is not one special diet to control symptoms."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The most surprising thing is that the doctors say that I have the crohn's disease, but because it hasn't went full active, they want to wait to put me on the medications for it. I don't understand if they are waiting for the damage to come or to be seen before they will do something about it!!!!"

What have you done to help you cope with the disease?

"I am taking florastor and lactrobacilus . for now I sit around, sit and nauseas, no energy. I try to just make myself get up and go. Some days are harder than others."

What suggestions would you have for people newly diagnosed?

"Always ask for a second opinion and always always ask questions about the medications they give you and any other questions that you may have."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The ignorance of other people without the disease. For example: myths that stress and diet CAUSES Crohn's."

What have you done to help you cope with the disease?

"Maintain diet, journaling stress levels, diet, local support group, research information and consulting specialists about my disease."

What suggestions would you have for people newly diagnosed?

"Read everything you can get you hands on about the disease, talk to your doctor and find a treatment plan that works for YOU."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"It surprised me the most how crohn's can affect your entire body, not just the GI tract."

What have you done to help you cope with the disease?

"I have taken a very proactive role in the nutrition aspect of it. I have eliminated certain foods from my diet that cause flare-ups, and have found ways to ensure proper nutrition through supplements and nutritional drinks."

What suggestions would you have for people newly diagnosed?

"Keep track of what foods irritate your crohn's and stay away from them. I have been sick too many times when it could have been prevented by not eating something in question. Also, this disease is not a death sentence. You can manage it and lead a normal life."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The direct relationship between stress and flarups."

What have you done to help you cope with the disease?

"Regular exercise and good diet to keep energy levels up."

What suggestions would you have for people newly diagnosed?

"Keep exercising when able, eat a good diet, do not smoke and only drink alcohol on occasion."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"Everything really."

What have you done to help you cope with the disease?

"Pray, take medicine, Remicade, and live a normal life just like everyone else."

What suggestions would you have for people newly diagnosed?

"Research and ask questions."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"To be honest, I never dreamed all the things that the doctors said could happen have happened. Of course I have had Crohn's for over 30 years."

What have you done to help you cope with the disease?

"I try not to let it get me down, I try to stay upbeat, and yes I tell potty jokes, we have a joke in our house that when I go into the restroom they will see me in 30 minutes, a sense of humor is a must."

What suggestions would you have for people newly diagnosed?

"Don't let it get you down, fight to the bitter end, keep a sense of humor about it."



This person only answered question number three:

What suggestions would you have for people newly diagnosed?

"Newly diagnosed? Don't panic. Take it one day at a time. Keep positive and rid yourself of any stresses or people who cause you stress and unhappiness. However, don't move on impulse. I had an ileostomy at age 26 and am now 63, I have been in remission for 35 years and the ostomy has never been more than a nuisance. It gave me my life back. I am a real success story and nearly lost my life to Crohn's, the surgery for the total removal of my colon and all but 10 feet of my ileum was better than chipping away bit by bit and all the complications of multiple surgeries would have caused. I believe that lifestyle and attitude are a major contribution to my remission."



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?

"Do not get stressed out on anything and find something you love and do it a lot."

What suggestions would you have for people newly diagnosed?

"Take it easy, do not get stressed out or let minor problems bother you. Live your life the way you feel the way you should live and do not listen to people who think they know what they are talking about with this disease, only you know what is good and bad for yourself."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"Fistulas YUCK, I have had surgery."

What have you done to help you cope with the disease?

"Emotionally I need help."

What suggestions would you have for people newly diagnosed?

"Make sure your doctor knows what he or she is talking about. Having an unsure doctor makes things worse."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"What the Disease can do."

What have you done to help you cope with the disease?

"Have tried to stay stress free."

What suggestions would you have for people newly diagnosed?

"It isn't the end of the world."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"Since the eliostomy in 98 I do rather well."

What have you done to help you cope with the disease?

"Most of the time I try to live just as normal as every one else. It also helps to remember no matter how bad you think you've got it someone else has it worse."

What suggestions would you have for people newly diagnosed?

"To try to find out as much as you can about the disease as you can. And remember your not gonna experience everything that maybe someone elese has. It can be scary to know all the things that can happen but that doesn’t mean it will. Have a good DOCTOR that’s the biggest thing for me."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"All the drugs! I've never been on so many at one time."

What have you done to help you cope with the disease?

"Get interested in music, and take piano lessons."

What suggestions would you have for people newly diagnosed?

"It WILL get under control, even so it may seem like it takes forever."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The fact that you don't know when it is going to comeback.. one day I can eat something and feel fine, the next day I eat the same thing and I am sick...grrr..."

What have you done to help you cope with the disease?

"I have researched.. researched... researched... then talked to my doctor. I took control of my own treatment and I am not going to stand by and let some doctor fill me with meds and not know why, or the true side effects."

What suggestions would you have for people newly diagnosed?

"Research. I can't say it enough.. know what you have been diagnosed with, the doctor will never tell you everything they are worried about treating the symptoms now, not the disease, and trust me they don't care about the side effects of the meds 10 years from now. they worry about the here and now. Make sure you do the leg work and you take control of your own treatment and recovery. good luck."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"Have had the disease for 11 years and never had a fistula..... very surprising to wake up with that one day."

What have you done to help you cope with the disease?

"I have had trouble lately coping... I talk to my husband.... but it doesn't seem to be enough lately.. (I am going thru the worst flare-up of my life right now)."

What suggestions would you have for people newly diagnosed?

"Find a doc that you like. It is so important to have a doc that you feel comfortable with."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How bad my arthritis is at times."

What have you done to help you cope with the disease?

"Every imaginable thing I could from acupuncture to prayer (I am not a religious person) and everything in between."

What suggestions would you have for people newly diagnosed?

"Find a good doctor that you trust."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"What has surprised me the most has to be the fatigue!"

What have you done to help you cope with the disease?

"I talked about it with my family and friends, but mostly I prayed!"

What suggestions would you have for people newly diagnosed?

"Definitely talk to someone about it, dont keep it all in! It's ok to be angry. I was so angry about it when I first found out, but you move on and eventually except it!"


Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How insensitive and cruel other kids can be about my having to go to the bathroom all the time and how teachers don't understand why I'm absent so much and don't want to help."

What have you done to help you cope with the disease?

"Taking medicines like I should and eating right

What suggestions would you have for people newly diagnosed?

"Find a good doctor and follow what they tell you to do."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How scar tissue can build up from chronic inflammation which in turn can cause blockages."

What have you done to help you cope with the disease?

"I try to maintain a positive attitude, take my 16 (sometimes 19) pills a day and have annual colonoscopies (yuck!)."

What suggestions would you have for people newly diagnosed?

"Try to stay positive, follow your doctor's advice and take care of yourself. Crohn's can be a pain in the rear (literally) but try not to give into it. Decide to not let it control you. It's really difficult to do that sometimes but give it your best shot."



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 Crohn's Disease is that it can affect people in such different ways and no two cases are exactly alike. Another thing that surprises me about Crohn's Disease is that it is still so difficult to diagnose."

What have you done to help you cope with the disease?

"I have days where it is much more difficult to cope than others, but I just try to have a positive outlook and think to myself, "things could be worse" and try to look at the overall picture. Overall, I have a very full life and I try to look at Crohn's as something that has made me a stronger individual."

What suggestions would you have for people newly diagnosed?

"Do as much research as you can about the disease, however, try to stay away from things that are going to scare you. The internet can be a help, but also a hindrance. Monitor yourself very closely and take very good care of yourself. Make sure you have a gastroenterologist who is helpful and who also has a good bedside manner and who is encouraging. That was one of the biggest helps for me-having someone to tell me that there's light at the end of the tunnel. Also, schedule regular check-ups with your GI (I go once a month) just so he can monitor how you're doing and that way if you have any questions that pop up in between, you can write them down and he/she can answer them for you at your regular visits."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"That I have an illness at such an early age and the amount of pain it gives me."

What have you done to help you cope with the disease?

"Push, I’ve pushed to make myself do things. It’s hard but it helps."

What suggestions would you have for people newly diagnosed?

"It’s okay, I think talking to people that understand helps a lot!"



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"I'm surprised with how many symptoms I have that are outside of my intestine. When I was first diagnosed, I thought that this was an intestinal disease. I know it is, but I have so many problems with my eyes, and achy joints, etc. It surprises me how much this disease affects my whole body."

What have you done to help you cope with the disease?

"I've told my friends, family, and co-workers about Crohn's. It helps not have to explain to people every time you're having a bad day. I'm lucky enough that my boss doesn't ask questions when I have to leave work for doctor's appointments or just because I'm not feeling well."

What suggestions would you have for people newly diagnosed?

"The first thing I would suggest (and I'm still learning this myself) is to realize that this is a disease. Don't try to tell yourself that this isn't a big deal, because if you don't take care of yourself, you're not going to get better. If you're tired, take a nap; if you're not feeling well, then call in sick to work. Take care of yourself!"




Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The lack of energy."

What have you done to help you cope with the disease?

"I try to stay active, and take my treatments monthly."

What suggestions would you have for people newly diagnosed?

"Try to take care of your body, and seek help, this disease wont go away!"




Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"Given the severity of the disease, I was shocked by the lack of information the diagnosing doctor gave me. Which was pretty close to nothing."

What have you done to help you cope with the disease?

"Have done a lot of research on my own to learn more about it. Changed my diet. Actually, I'm still trying to cope with HAVING the disease. I was dxd 2 years ago.... and I still can't accept it :-/"

What suggestions would you have for people newly diagnosed?

"Ask, ask ask questions! Find out everything you can about Crohn's! If someone TELLS you they know someone else who has Crohn's....ask, ask ask!"


Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"Being so tired all the time."

What have you done to help you cope with the disease?

"Started drug therapy and began learning more about the disease to teach my friends and family as well as myself."

What suggestions would you have for people newly diagnosed?

"Let you family know how serious of a condition this is, you really need a lot of support....especially on the bad days!"



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"Nothing. I'm just glad to put a name to the occasional abdominal flare ups that I've been having for the past 5 years."

What have you done to help you cope with the disease?

"I've made a conscious effort to reduce the stress in my life and to learn to say ""no"" when I don't want to do something. Additionally, I've been eating smaller, more digestible portions of food at a time, and have cut back my alcohol consumption to an occasional glass of wine."

What suggestions would you have for people newly diagnosed?

"Since I am newly diagnosed, and my overall symptoms are not generally severe, I feel that I am lucky, and not in a position to offer suggestions to those more acutely afflicted."





Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The amount of pills that I need to take, the side effects of those pills was a major downer (Osteoporosis at 23, and gained a huge amount of weight). The fatigue gets to me a bit."

What have you done to help you cope with the disease?

"Taken my pills religiously, read, read, and read some more on anything I can get my hands on about my illness."

What suggestions would you have for people newly diagnosed?

"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."




Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"What has surprised me most is that a lot more cases of this disease seems to be larger than when my Mother had it. And how changing my diet has helped."

What have you done to help you cope with the disease?

"I try not to let stress overcome my life by letting people know I can not be around them if they choose to add stress on to my daily life. Learning what personal limitations are and how to maintain those limitations is important. Also I have been learning that my body does not do well with western meds and that natural herbs are best for me."

What suggestions would you have for people newly diagnosed?

"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."




Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The amount of people with the disease has really surprised me. I am only 21 years old and have never heard of the disease until I was diagnosed. I am also surprised my how much weight I have lost and how many pills I have to take each day!!"

What have you done to help you cope with the disease?

"I have accepted that I have the disease and that I will always have it. I have joined support groups and made some friends with the disease to talk to. Support is the key!"

What suggestions would you have for people newly diagnosed?

"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.!!!!"




Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The amount of people with the disease has really surprised me. I am only 21 years old and have never heard of the disease until I was diagnosed. I am also surprised my how much weight I have lost and how many pills I have to take each day!!"

What have you done to help you cope with the disease?

"I have accepted that I have the disease and that I will always have it. I have joined support groups and made some friends with the disease to talk to. Support is the key!"

What suggestions would you have for people newly diagnosed?

"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.!!!!"




Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"I was first diagnosed with Crohn's 24 years ago got to the point I couldn’t walk and had surgery at 21. Since then I have learned to live with the disease and have been on nothing but, vitamins and a healthy diet and believe me it works. You control it not the other way around!"

What have you done to help you cope with the disease?

"Lived my life for my children which when I was diagnosed with the disease they told me we would have none. I have 4."

What suggestions would you have for people newly diagnosed?

"DON'T LIVE FOR THE DISEASE OR ONE DAY AT A TIME. LIVE FOR LIFE!!!!"



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"I was on Remicade an injection)medication that is used for Crohn's and has done very well in the past. About 4 months later while on it, I had an allergic reaction and my right lungs shut down. Yet it was working great for my Crohn's. It was interfering with my lungs and the rest of my body. Now that was scary. Well now I am on 6mp and that is doing okay for the most part, but I could be better. Another thing that really surprises me, is that I can be great one day, happy, and healthy, and then the next day be in the ER at the hospital. It is just so unreal!"

What have you done to help you cope with the disease?

"I have tried just about every med. that is out their since I have been diagnosed with it two years ago when I was 21. I have tried everything from steroids-antibiotics injection drugs - natural drugs - work out - food - pain killers, etc. Just about everything you can think of. Nothing has really worked for me like it should. Of course steroids are always going to do something good for your Crohn's, however, the side effects are just as miserable as the disease it self. Sometime you'd rather want to take a med. that helps the disease but not as much as you wish it would, but with no side effects."

What suggestions would you have for people newly diagnosed?

"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!"



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How quickly a mild flare up can turn into a nasty sever flare up that requires surgical intervention."

What have you done to help you cope with the disease?

"Experimenting with diet to find out what's best for my body, trying to reduce stress, joined an online support group."

What suggestions would you have for people newly diagnosed?

"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!"



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How strong I really am. I was so sick and weak I thought I would die - 7 surgeries later within a year and a half of each other I am stronger than before. It is also amazing how much one person can go to the bathroom and have in them!"

What have you done to help you cope with the disease?

"Plan, plan, plan everything. This makes life less stressful. I do some things spare of the moment and things do go wrong, but if I have a plan I can deal with these little surprises better without getting too stressed out."

What suggestions would you have for people newly diagnosed?

"Educate yourself. The more you know the better!"



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The other conditions that can go along with the actual Crohns (what it can do to your eyes, joints, skin, etc.)"

What have you done to help you cope with the disease?

"I have researched a lot of information and purchased a lot of books. I joined support groups (CCFA and Remicare). I have also just begun seeing a nutritionist and trying to use yoga, pilates, and relaxation for healing."

What suggestions would you have for people newly diagnosed?

"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."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How bad it can be - and that one can still deal with it."

What have you done to help you cope with the disease?

"Medication, changed my diet, yoga, learned to reduce stress and take one day at the time."

What suggestions would you have for people newly diagnosed?

"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."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"Fatigue."

What have you done to help you cope with the disease?

"drank alcohol a lot more."

What suggestions would you have for people newly diagnosed?

"try and get used to it."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"The intensity of the pain."

What have you done to help you cope with the disease?

"I'm still learning."

What suggestions would you have for people newly diagnosed?

"Read up on everything you can about the disease."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How good I feel when I'm in remission - I almost forget that I have the disease until I eat the wrong thing or get too stressed out...then I'm reminded very quickly that this thing isn't going anywhere!"

What have you done to help you cope with the disease?

"Built a support network of friends... and kept good insurance."

What suggestions would you have for people newly diagnosed?

"Remicade! It's my miracle drug."



Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How tired I get. How little anyone understands about the disease."

What have you done to help you cope with the disease?

"Changed how I eat. Much more focused on nutrition."

What suggestions would you have for people newly diagnosed?

"Hang in there. Don't buy into the theory that what you eat has no impact."


Since you were first diagnosed with Crohn's Disease, what about your condition has surprised you the most?

"How I have a appetite and when I get the food I don't want it."

What have you done to help you cope with the disease?

"Take medication and pray."

What suggestions would you have for people newly diagnosed?

"Hang in there take it one day at a time. Most importantly stay strong and counseling is a plus, it helps."



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.)


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."

Ed


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."


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."