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young and living with crohns/colitis?

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Crohn's Disease
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Posted 4/23/2011 12:34 PM (GMT 0)
Hello all....my name is Claudette and im new to this website...I was diagnosed with crohn/colitis when i was 21 years old now im 26....Its been fairly difficult not having anyone to understand what i am going through.  While I have support from my family, i have not really told my close friends...At first I felt embarassed but now that i am a little older I feel its personal...I have gone through long periods of remission and luckily only 1 flare up that landed me in the er twice.  I have been on a few different meds but now im on asacol and its been workin since i havent flared in almost 2 years..Looking to hear from people with similar experiences
Posted 4/23/2011 1:10 PM (GMT 0)
Yea, the old folks think they know it all. I hear you. I got DX w/ UC just before my 24th birthday. Now I have Crohn's most likely. And that's not even it.

I think the emotional abuse we get from older folks can be far worse than living with an illness that limits us physically. Cause you know we shouldn't have or be having these problems at our age. Like can't eat this, can't eat that. You won't eat dairy, wheat and so on. Then you get screamed at for not eating at family meals cause there is no food for you to eat that won't kill you.

Just want to lay up in bed all day cause you hurting. Then you feel OK one or two days out of 7, got some energy, feel like getting out of bed, and try to make the most of a not so crappy day and then get dumped on. Older folks think it is a joke and that you don't have a illness that limits you physically.

Not much you can really do...just be the bigger person and don't let the older ppl. see you limp cause you hurt so bad. Or walk or go away from them if they trying to break you down so bad you want to cry. A lot of ppl. are like that, they got to rip on others or make them feel bad or worse to make themselves feel better. JMO.

Stay strong. Roll with it. Don't beat yourself up. You got to accept yourself and way things are now even if others don't or won't.

Peace
Posted 4/23/2011 2:21 PM (GMT 0)
Your friends, your REAL friends, will be supportive. I think if you first talk to your closest friend and let her know that you feel lonely with your illness, you will get the love and support friends give each other.

On the other hand, most people aren't comfortable talking all the time about unpleasant stuff. So welcome to the forum, where we can share and vent about all that stuff all the time! Bring your troubles here.

I'm glad you have found a good medical treatment and that you aren't having constant problems.
Posted 4/23/2011 2:44 PM (GMT 0)
Hi Claudette and welcome to Healingwell. You will find alot of love and support here from young and old folks who are also living with this darn disease. I too am maintained with only Asacol and currently in remission.

I was diagnosed at 18 and am now 53, so thats nearly 36 years of living with this darn disease. You younger people are not the only ones that have issues with folks not understanding how sick you really are. My bosses knew I had Crohns disease and I had tried to educate them some about the disease without much success. What happed to me was I had to have emergency surgery due to a complete ostruction. That really opened peoples eyes to what this darn disease can do to a person. And how it can change from one day to the next.

I prefer to be open and honest with everyone. It not only helps them to understand what I am going thru, but also teaches them about the disease itself. If you are always quiet about whats wrong with you, why you can't eat this or that, or why you sometimes have to cancel plans at the last minute of course they are going to think you are just flaking out on them. Being open isn't causing them to pity you, its teaching them that you have a chronic and incurable bowel disease. I don't go into detail about the symptoms, but just explain that its like having the stomach flu or food poisoning daily.

Archiestyles you crack me up with your "old people" comments. They are LOTS of older folks on this forum who have lived with this disease longer than you have even been alive. At least for your generation you have more options and more medical knowledge/treatments than some of us have had when we were your age. You should talk with some of them, you might learn a thing or two. JMHO

Again welcome Claudette, we look forward to hearing more from you. And I hope you learn a thing or two in the process. Hugs!

Gail*Nanners*
Posted 4/23/2011 5:13 PM (GMT 0)
Hey Claudette. Been in the same boat as you before. I was diagnosed at 18 and been sick with this disease for going on 9 years. At first I was too sick to do a lot and up until I got diagnosed, a lot of my friends stopped talking/hanging out with me. The ones that stayed I really have been extremely close to, even now.

I had a nice 8 year remission with a very small flare in between. Made it through undergrad and dental school. Finally working as a dentist...But now I've had a horrible flare this year that I think I might just be getting over (after 6 months of antibiotic, 2 courses of steroids, 4 er trips, 1 surgery and 1 hospital stay and starting Remicade, oh my!!).

I used to be very closed up about my Crohn's...as it made me feel like I had something to hide. Now I'm a lot more open about it and people are very, very understanding. And those that aren't, frankly aren't worth your time.

BUt you're in a position where you can be quiet about your Crohn's...as you sound like you've been doing pretty well with it. Mine has tried to decimate my life lately, so I've needed to be more open about it since I've missed some work, trips with friends, and generally an active life I think someone my age should have.

But you're not alone and you always have the forum to talk. :)
Posted 4/23/2011 8:25 PM (GMT 0)
Thank you guys soooo much for the responses :)
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