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Does anyone have any advice?  I was just diagnosed 4 hours ago, and I don't know anything about Crohns!!

 Reply posted for jmcbrid2.

sorry for the poor typing..had to shorten so much because of the character limit :(

 Reply posted for AshleyPaige11.

# 1: I know it seems like ur whole world is turned upside down,but u will live a normal life so don't worry!We have it tough,but in between flares,we are just like everyone else!
I agree w/the other posts, make sure u keep track of what u eat &how ur body responds to it.Everyone is different so u'll need to find out what U can eat&can't.some general things to avoid: nuts,seeds, alcohol,leafy veggies,corn,dried fruit.these things just have the tendency to irritate ur digestive track.Also,be sure u're dealing w/the emotional aspects of having a chronic disease.sometimes we get so wrapped up in just maintaining the disease that we forget how it affects us emotionally &then that part can truly take over&send us towards isolation or depression.so make sure you have someone to talk to&i mean REALLY talk to,if not a professional, then a close friend or family member.It helps tremendously to be able to go in depth about how u're feeling about all of this&use the forum too! That's what we're here for!
Make sure to educate urself on everything!There are crohn's&colitis websites everywhere!read up! Learn about the actual processes of the diseases,the diff in the diseases,flare ups,treatments,increased risks,everything.It'll help u understand ur body &be better informed when u see ur doctor.

Here are some websites:
of course www.ccfa.org
livingwithcrohnsdisease.com
digestive.niddk.nih.gov/ddiseases/pubs/crohns
www.medicinenet.com › ... › digestion az list › crohn's disease index
crohnsandme.com
ucandcrohns.org
http://www.crohns-disease-and-stress.com/crohns-disease-information.html

& never stop reading.I was diagnosed in2007 & I still recheck the websites.new meds& info are always being introduced.U will find it much easier to deal w/the illness when ur well educated.If u need to talk or want to know more about what to expect,please email me jmcbrid2@uga.edu

 Reply posted for seattle93.

For all the newcomers to this disease:

Please do the research and find out as much as you can about this disease. It does matter what you eat and I understand sometimes Pizza seems to work and at other times it doesn't but thats because of the drugs you are on from your GI Doc. If you truly want to heal (not a cure) but heal so you have no more symptoms off and on read the book Breaking the Vicious Cycle and go to www.Crohnsdad.com. His daughter has Crohns and he has a ton of info on that site. If you do follow the SCD it does work but you have to do it 100%. Can't just be when you want or on weekends. And drinking alcohol is out. Maybe later when healed a few sips of wine here and there. Also there is a woman that has Crohns and she has great recipes and info Called No More Crohns. You people are young and have your whole lives ahead of you. If you do this you would probably be able to wean off the meds in a few years or months depending on your situation. Isn't that better than years of drugs and side effects and feeling good once in awhile.

Good Luck
MJP

 Reply posted for AshleyPaige11.

I hope things have gotten better since November! In addition to finding a great GI doctor and nutritionist, one of the most important things to find is a counselor or therapist. Life is hard enough without having this upsetting, embarrassing and infuriating disease. A therapist will never judge you, and they can provide so much that even your best friends and closest family members can't. Try out a bunch of different ones, be honest and open, and remember that you aren't alone!

<3

 Reply posted for Bsprint5000.

"For all those newly diagnosed young adults, how have you handled being discharged after your initial diagnosis?  Were you able to revert back to a similar life style prior to your diagnosis?  Clearly, I'm going to be more conscience of what I eat going forward in life but pizza is my most favorite food.  I'm just interested in how people have adapted post diagnosis.  Has anyone had another flare up of symptoms?"

I am 19 and I was diagnosed a couple days after I turned 16. I would say it just takes time to come to terms with having this disease. There will be ups and downs, but it's important to have hope. I have not been able to have the same diet or lifestyle since I was diagnosed, but I think I'm stronger because of it. You just have to find and know your limits. I also love pizza btw and I can eat it on good days! You'll find out what you can tolerate with time. I have also had a couple of flare-ups since my diagnosis. I am actually having one now and it makes college life very difficult, but it's important to take it day by day and try to take care of yourself the best you can. Also, stay on your meds! I got lazy and now I've been in a flare-up for months. 
Good luck to you!

-Joan

I find it to be trial and error too. I'm fine with pizza, as long as it doesn't have too much tomato paste, but I know people who have issues with it. Crohn's is frustrating because what food may be fine for me might not be fine for you and vice versa. As for the beer, I'm not a huge beer fan, so I'm not too sure. But a friend of mine says that you can drink Guinness. I drink more of the straight alcohol (scotch, rum, etc). because it is not mixed with a high sugar concentration. There was a study done by the NIH which I've noticed is true for me as well, that Crohn's patients had increased stomach pain with drinks that had high sugar concentration (like smirnoff ice), but had no more problems than normal drinkers with alcohol such as wine. A way to test would be to eat things you know will cause no problems and then add the new food/drink in. If you feel terrible, then you know its probably the new addition and you probably shouldn't have it.. I would check with your doctor before drinking though, because some drugs do not mix well with alcohol. Some people swear by the SCAD diets and stuff like that, but they didn't work for me, as when I'm in a flare EVERYTHING bothers me, but when I'm out of them, almost nothing bothers me. But as I said before, just because it didn't work for me, doesn't mean it won't work for you. My old gastro doc had a guy for whom humira didn't work, and they were considering pretty intense surgery, and the guy tried Activia, and somehow he was fine by just having Activia everyday! It's frustrating, I know, but hopefully you can find that medicine that lets you stay in remission so you can eat whatever you want! 

 Reply posted for alanschachter.

Thanks for the reply Alan.  My GI doc right now said it would basically be trial and error to see what I can and cannot tolerate.  I just got a second meal of similar broths and jellos and my body seems to be acting pretty normal.  I haven't needed the pain medication in a couple days now.  Doc is going to give me some solid foods starting tomorrow morning and if all goes well hopefully I will get to go home tomorrow evening. 

-Pat

 Reply posted for AshleyPaige11.

I was just diagnosed with Crohn's this past week.  I had no prior symptoms and my body seemed to be pretty normal up until a week ago.  I'm 26 years old and can't say I live the healthiest life.  I'll usually go out for some beers on the weekend and eat bad foods while watching football on Sundays.  I am very active though as I have been a runner for most of my life.  About a week ago I experienced a very sharp pain in my lower right abdominal area.  After a day or two of fighting it my roommate said I should go to urgent care.  The initial diagnosis (without any tests) was appendicitis.  However, a Cat Scan revealed that I had some inflammation in my colon and bladder.  There was also some fluid build up in my pelvic area.  Today marks my 9th day in the hospital (went 9 days without food too only IV fluids) and I was able to have some clear liquid food.  This included beef broth, jello, iced tea, and grape juice.  I had this about 6 hours ago and my body feels pretty normal right now.  I guess what I'm wondering is are there different severities of Crohn's?  I've done some reading and from what I gather is seems a lower fat and lower fiber diet would be ideal.  They are probably going to give me some real food tomorrow and see how I handle it.

For all those newly diagnosed young adults, how have you handled being discharged after your initial diagnosis?  Were you able to revert back to a similar life style prior to your diagnosis?  Clearly, I'm going to be more conscience of what I eat going forward in life but pizza is my most favorite food.  I'm just interested in how people have adapted post diagnosis.  Has anyone had another flare up of symptoms?

I plan on browsing these forums as often as I can to learn as much as possible about the disease and share the experiences I have.

 Reply posted for AshleyPaige11.

I have had UC for a few years now. You will have your good days and bad days. Watch what you eat, stay on your meds and stay positive. Dont let it dictate your life. 

 Reply posted for AshleyPaige11.

I have recently been diagnosed as well. i understand how you feel about not knowing much about this condition. its very confusing.  i have read up a little bit but am still very confused. i am trying to find out to take care of my condition, hopefully that i(we) are young our bodies can heal its self.  just eat well, exercise, and avoid stress. good luck to you

 Reply posted for AshleyPaige11.

Welcome to the club!