Community Forum

Hi,
I have had Crohns Disease since I was 13- exactly, and Im almost 18. I have been through everything- the pain, hospitalizations- being in the ICU, surgery, meds., diets, and three different doctors in three years.... and more. I also go through a swing of moods every day. Mainly lonely feeling and sad and cranky. I don't have anyone close to me to relate to and I don't have anyone I am close to who I can vent to. Everywhere I go, I mostly hide behind my smile. I am ALWAYS, NON STOP, thinking about my health situation and it brings me down- especially when I'm with friends... I think to myself " What do they think of me?".... Please help me! I want happy days to be the memories of my teenage life- not sad, lonely, sick days. (Well, not sick days really- Ive sort of been in remition for about two and a half years! :) not including surgery. But I do have my hard days. Lately, since March Ive been doing worse.) What do YOU suggest I do to be HAPPIER?
PLEASE write back soon!! Ill be looking for your input and helping hand.
Thanx,
"IveGotIt"

Reply posted for ivegotit.

My son was diagnosed when he was 15 years old and I can imagine how you must feel. Plus, we lived in the Middle East at the time and the kids made fun of him, so he was also a loner. The most important thing is the people you surround yourself with. It's really easy to say "think positive", while it is hard to do but saying positive words s, thinking positive thoughts, surrounding yourself with good people, and trying to find light in any situation might help.

 Reply posted for IveGotIt.

I was 24 when diagnosed and have lived with CD for 23 years now. While you have to live with the effects of CD, don't let the disease define you. Don't become somone who stays home and pulls away from close relationships because of your disease.

I know many other people with CD that hold a variety of professional positions, have long relationships and have rewarding lives. Yes, during flares, surgery recovery and anxious times looking for a bathroom things can seem like CD dominated your life. But it won't always be that way. Dr's have plenty of tools to use in helping you to control and cope your condition in many regards. Eat well, exercise, take your meds responsibly, communicate with your doctor and keep positive as much as possible.

One last thing which has helped me the most with dealing with CD and for that matter all of life: pray, read the Bible, go to church, meet people there and always know that you are blessed in more ways than you realize. I have learned many things from having this disease including during the times when it was just me lying in a quiet hospital room between family visits.

God loves you, hears you always and has a valuable role for you to play in His kingdom that only you can fill. My relationship with God through Christ has given me peace, hope, joy and healing. He is my strength and refuge. He offers the same for all people.

If you want to email me directly about how faith has played a major role in dealing with CD just use christistheway1@verizon.net.

 Reply posted for IveGotIt.

Hi everyone,

My name is Monica, I'm 41 and I was diagnosed with Crohn's Disease 18 years ago.  I agree, it can be a very lonely, sad place out there when people can not relate nor understand the degree of our disease.  People think that pain is pain, but not to the extent that we go thru. If only they lived a day in our shoes then they would truly understand how we feel on a, almost, everyday basis.  I agree about hiding behind our smiles.  When people ask how I am, I always tell them "fine". Even when I'm not.  It's wonderful to have a support group out there that you can talk with.  We're all in the same boat, hopefully we can help each other along.  My email address is mponziano@sympatico.ca 

 Reply posted for IveGotIt.

First of all, you need to stop worrying about what other people think about you.  If they can't accept you for who  you are they are not good friends. All of the friends that I have, as soon as they knew I had Crohn's wanted to know what it was, what I had to do for it, etc. because most of them had never heard of it. If your friends don't know, talk with them about it if they are interested. It will help them understand it better.
Second, take care of yourself first. I have people who depend on me every day. I absolutely have to be careful so I can be there for them.
Third, keep your chin up. Things will get better.

 Reply posted for IveGotIt.

hi IveGotIt my name is Justin i am a 23 year old. i am going through the same issues that you are. i have had this problem since i was 11 years old and i don't have anyone to talk to about this problem. the feeling of being alone and depressed is always there so if you or anyone else wants to chat email me at jws31@yahoo.com

 Reply posted for grannygrump71.

Grannygrump: As long as you keep the glass 1/2 empty it will never fill up. I'm 73 and I've had Crohns since 1964. I eat what I can and leave the rest. I'm also mild celiac sprue. I can eat things with gluten, but I try to control it. When I go to a potluck I make a double batch of something that I know I can eat. I do a lot of rice.   That definately helps with the gas and diarrhea. Fortuantely I live in a Senior community where we can either vent to each other to say nothing. If someone listens to my gripes then I'm stuck hearing theirs. Some days I force myself to go out.Sitting at home feeling sorry for yourself proves nothing except you spent the day sitting at home. Ask your Dr. if he would refer you to other patients. He may also have another senior citizen. Check for a support group in your area. Get involved in a nutrition class for diabetics. A good nutritionist will blend the 2 diseases and come up with foods that are compatible. Check with your hospital and see what classes they offer.I live alone with 2 cats and they are usually sleeping so they are not good listeners. Good Luck Marilyn   I can always be e mailed at momzwier@aol.com

 Reply posted for grannygrump71.

Granny Grump, 

 Reply posted for IveGotIt.

hi,my son is 27 and he found out 2years ago.and he has trouble dealing everyday as well.working gets to him and just think he feels lonely.why i got on here try find him some support so i can have him get on and vent..thank you

 Reply posted for IveGotIt.

hi,my son is 27 and he found out 2years ago.and he has trouble dealing everyday as well.working gets to him and just think he feels lonely.why i got on here try find him some support so i can have him get on and vent..thank you

 Reply posted for IveGotIt.

Hi! My name is Melissa and I am 26.  I was diagnosed with crohns disease in 2007.  Having crohns is very difficult and you really need someone to talk to. I have a lot of people I can talk to but no one that really understands what I am saying.  It is good to have someone who is going through the same thing to talk to.  If you would like you can email me anytime midda123@yahoo.com .

 Reply posted for grannygrump71.

i'm sad that you are so sad.  i'm a good listener eromano49@aol.com.

 Reply posted for breezy.

   It seems like this last few yrs, Ive had the air knocked out of me so many times.  Im a grandma & as old as dust ....  The crohn's has really done a # on me the last couple of yrs.  Today I find out Im now diabetic, Ive never had any sign of it before.  No one seems to want to be around us older seniors.  Im not senile & wish someone would just come gab with me like they did before all of this mess hit me.  I really dont want to talk about it every time, they all seem to know all of the answers.  Only my Dr & I sure dont.  Now my diet will be changed quite a bit & Im not sure how this will work with the Crohn's.

   I feel so lonesome, no energy & wonder what tomorrow will bring.  So many of my friends have passed away, not sure I want to try to hard to find anymore.  Hurts to much to keep losing them.  Ive no desire to get dressed & go any where, the pain in my lower back is so rough, I dont wish to put clothes on that will make it worse.  I do hope all of you that feel alone will find you arent & be able to enjoy your good days.   Best wishes for better health for you, GrannyGrump

 Reply posted for ACA11.

heyy ... i know how your feeling. i been through *** and back!!

im 21 years old, i was diagnosed over a year ago. the first 6 months were very hard and i felt like no one understood what i was going through.. it was also hard for me to accept having to live with the disease for the rest of my life. email me talking to people who suffer from the same condition as you can help thegirl9488@yahoo.com

g-d bless you and everyone with crohns. it sucks!!!

i need a good diet plan, if you have one let me know.

 Reply posted for IveGotIt.

I am a young gramma but I am here for anyone who needs me.  I have Crohn's.  It is very difficult to make people understand.  My ex husband used to be sooooo ugly when we would go out to eat.  I know what I can eat and what I can't.  I now surround myself with people who at least try to understand.  I am here for you all.  Just shout out.  No one is alone.

Wendy

 Reply posted for ACA11.

I know excactly what your going through right now.  Im 18 and ive had chronic Uc for about 4-5years.  I get the same feelings of being alone and not having anyone there because I try to tell my family and friends and they try but none of them can really understand it. My gf just broke up with me because I was sick too much which didnt help but you gotta just take the punchs and roll with them.  Its hard but I try to think of it as il get through it, its there loss.  You cant let your disease or other people get you down, in my opinion the best thing you can do is stay positive.  I hope something in there helps and if you need someone to talk to you can shoot me an email
j-pallozzi@hotmail.com

 Reply posted for ACA11.

if i can help in anyway let me know i had a bad case of uc and then yrs later dianoised as havin crhones it sucks but we will all get through it i know after like 9 different serious surgeries if i can do u and make it through u can also my e mail is w8klm@yahoo.com  hey we all need friends that understand

 Reply posted for IveGotIt.

Hi im Ashley and I am 23 years old. I was just hospitalized last week and diagnosed with severe ulcerative colitus. The week before they had thought I have Crohns. I can soooooo relate to you cause I feel alone too most of the time. No one at my job (where I am most of my hours and days) understands. There is so much tension in my office because I was out sick and in the hospital. It is not easy being along with a diease like this. You should def. talk to your friends, or show them this website and try to explain to them what you are feeling. I did that with my family and boyfriend and I think they are starting to understand it a little more each day. I think about my health too EVERY SECOND OF THE DAY. I am on prednisone and I am having CRAZZZY mood swings, I am angry from the meds. and from this sickness. I am unable to control anything in my life right now and it's sooo hard cause I like to be in control of things. Sorry for rambling, but you should def. talk to your friends and try to get them to understand, showing this website to others does help! Good luck!!

 Reply posted for IveGotIt.

You have a core of friends surrounding you, talk to them.  Explain to them what is going on, share some of your stories and ask for a shoulder to lean on.  I can almost guarantee that there is one person in that group who would be there for you no matter what. 

I'm not that old and decreped, my email is aca11@ymail.com if you wanna write.  I'm a good listener.

I'll be your friend.