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First time

first time

Ok, so i got diagnosed with crohn's march 31st 2009. before that i use to sit around very weak and unable to eat for weeks at a time. im a 22yr old male from oklahoma. this disease is very painfull and i cant afford my asacol they have me on it 3 times a day at 800mg. idk what to do sometimes the pain just gets to be too much. i have had surgery and they took a foot of my intestines out aswell as my appendix that ruptured. i guess it would just be nice to have someone who doesnt find this funny and talk to them. anywy thanks for the views and replies in advance.
 

forum contributor

Captain Obvious
:welcome: to the forum, Josh!

Sorry you're going through such a difficult time. You'll find that this place has very supportive people and there's SO much information on here that may help!
 
Welcome Josh.
I dont think anyone here thinks Crohn's is funny... well not for other people, we might laugh at ourselves and the horribleness of it all, as otherwise, certainly with this crohnie, I'd go stark raving mad.
 
Josh - welcome to the forum :) you've found a whole bunch of folks here who understand the seriousness of this condition, and how it feels to have it. please do try that link to the CCFA - you're too young to resign yourself to a life of pain and misery, with no prospect of help.
 

fenway1971

Sports Crohnie
Hi Josh!
Welcome. This place is great and you'll find folks here who'll understand you and not laugh at you. It's a rough disease and I hope you find answers and support here.
 
hi Josh. :welcome: Not much more I can say than others already have, you found a great place, we don't think it's funny but we are a funny bunch. :)
 

Regular Joe

Senior Member
Hi Josh,

I'm new here, but I'll go ahead and welcome you, too. You have a serious illness, my friend, but it is a disease that we can live with, and if we're serious, we can make a worthwhile life happen with this disease. I'm stubborn as a mule with this, and I've been beat up with a few dozen other conditions before this disease sprung up.

There was a time when I wanted to give up and die. My will to live was just about gone (it was during a time when I had pneumonia). Then I got beat up more with a mini-stroke, and then kidney stones. Even today my speech doesn't work quite like it used to. Today I was talking to myself, and I said some word and my lips would not do what I wanted them to do. I spent a half-hour trying to "retrain" my lips to move the right way using my hand, and doing excercises with my tongue and lips. I must have looked like a fool to anyone watching me!:tongue:

That's just a long way of saying that if you want a life that's worth living, like mine is, sometimes it takes hard work and a stubborn will to not only live, but a strong will to find the good things that are still here in front of our eyes - things we can enjoy and take stock in that life is fun in spite of circumstances.

You look at some of these gals who post here like "Dingbat" and "Marissa", and "Kello" - and all the rest of these members (men and women) that have posted thoudsands or hundeds of replies and talked about probably every darn thing that can be talked about concerning Crohn's Disease. I wouldn't try to get in the way of their determination because I'd get run over like a steamroller! They are many people who know how to find strength, even in the middle of weakness or physical battles like you're in right now. Then they take the time and energy to give of themselves for your sake and mine, so that we can be helped to find hope from their experience.

I understand how discouraged you must feel. I've been that way, too. You're not alone. All of us here come from many different places, and have beliefs, left to right. But I'm thankful there's a place here where we can share our "little wins" that give us more strength to do what seems to be impossible.

I have a son your age, and it's hard to picture him with this same disease. I'm sorry that you're facing such pain, and knowing, well this is a lifelong journey. I know it's not a real bright spot in your life.

My girlfriend's sister has Crohn's and she's about 52. When she was 25, she had her large bowel removed and began using the stoma (sorry if I said it wrong). Maybe that doesn't sound hopeful, but today she has 2 sons, 3 cats, and a loving family. Last year she had her first flare since she was 25. Hope is still alive for the sister; 27years after she got the same news that you got, Josh.

Back then, the medical knowledge was not as precise as it is today. My girl's sister survived and is having a better life today because she has this sheer determination that the disease would not define her - she wasn't going to allow Crohn's Disease to become her identity. I wish her diagnosis would have come today instead of 27 years ago, because when it onset, she was your age, Josh, and there wasn't near as much research and information as there is today.

I believe that there is always hope. I'm suggesting that you "workout" and "build up" your heart and soul on the hope and experience that is shared here. This disease is not easy, especially if you're an old coot like me who's sometimes set in his ways, pretending he's "superman" like I was when I was 20 years old. It took me 2.5 hours yesterday to vacuum and clean my living room and dust (yes I dust - probably my "inner female" at work). But I didn't finish dusting cuz I ran out of steam! Little "housecleaning" tasks like this used to take me only about 20 minutes at best, but it took me 2.5 hours.

I was in pain, my back was nagging me, and I was shaking hands with a toilet paper roll every hour while "dropping the kids off at the pool". I was fatigued, too, and had to rest every 15 minutes. I just shook my head and grit my teeth and did the work, slow as hell, but I started and got finished.

It took me some 30 years of work to get my life in decent shape. Now that my life is in pretty good order, it's comfortable to live in my own skin. Buddy let me tell you what, I'm not surrendering my life and what I've accomplished to this disease! Crohn's Disease is an illness of my body. It's physical for the most part, but it will try to get my mind too.

As long as I'm able and have breath left in me, I'm gonna give living my best effort. In fact I'm determined to make more of it. Sometimes its a tiny bit little each day, but it's my only life. It's up to me to make it a better life.

Thanks for joining and sharing,
Joseph
 
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ok so i left a few details out of my story i had a surgery april first this year the day after i got diagnosed with crohn's my appendix had ruptured and they said i had 3 days to live if they didnt operate immediately so i told them go ahead because i have a daughter and i wanna be as well as i can be for her, they also took out a foot of my colon or 6 inches of my small and 6 inches of my large intestene idk if thats the same thing but it was one of the two. i lived with this stomach pain for almost a year before i had it checked out i laid in bed with a couch pillow on my stomach while i laid on my side in pain for weeks and months at a time. it was horrible but i was stubborn and thought it would go away like everything else did but it never did so i eventually got to the hospital and got diagnosed and had the suregery. after i had the surgery i was supposed to go see a G.I. doctor and i never did, i know bad on my part but i dont have the money to go pay to see one. sad excuse i know but its only the truth. now almost 6 months after my surgery my stomach is still in pain daily and i just started my asacol like a week ago if that they have me on 800 mg 3 times a day..... plus im taking prednisone and that seems to help for a little while. but now my rectum is very very very tight and i haven't had a solid b.m. in months its all been liquid and it hurts very bad when i have to go to the toilet. sometimes i dint eat all day just so i dont go to the toilet as much, its crazy but thats how painfull it is to go when i have to go. anybody ever had this problem? if so can you help me?
 
Hi Josh,

I am also new and have found this site to be really informative I hope you get yourself sorted as it sounds like you have and are having a really hard time. I have been reading other peoples stories and they have been really helpful.

Welcome, Theresa
 
Helllo again Jsh you must always remember having surgery fir CD dose not always syop the pain, as I myself have found out, You just control it the best you can. Peggy
 
Regular Joe said:
Hi Josh,

I'm new here, but I'll go ahead and welcome you, too. You have a serious illness, my friend, but it is a disease that we can live with, and if we're serious, we can make a worthwhile life happen with this disease. I'm stubborn as a mule with this, and I've been beat up with a few dozen other conditions before this disease sprung up.

There was a time when I wanted to give up and die. My will to live was just about gone (it was during a time when I had pneumonia). Then I got beat up more with a mini-stroke, and then kidney stones. Even today my speech doesn't work quite like it used to. Today I was talking to myself, and I said some word and my lips would not do what I wanted them to do. I spent a half-hour trying to "retrain" my lips to move the right way using my hand, and doing excercises with my tongue and lips. I must have looked like a fool to anyone watching me!:tongue:

That's just a long way of saying that if you want a life that's worth living, like mine is, sometimes it takes hard work and a stubborn will to not only live, but a strong will to find the good things that are still here in front of our eyes - things we can enjoy and take stock in that life is fun in spite of circumstances.

You look at some of these gals who post here like "Dingbat" and "Marissa", and "Kello" - and all the rest of these members (men and women) that have posted thoudsands or hundeds of replies and talked about probably every darn thing that can be talked about concerning Crohn's Disease. I wouldn't try to get in the way of their determination because I'd get run over like a steamroller! They are many people who know how to find strength, even in the middle of weakness or physical battles like you're in right now. Then they take the time and energy to give of themselves for your sake and mine, so that we can be helped to find hope from their experience.

I understand how discouraged you must feel. I've been that way, too. You're not alone. All of us here come from many different places, and have beliefs, left to right. But I'm thankful there's a place here where we can share our "little wins" that give us more strength to do what seems to be impossible.

I have a son your age, and it's hard to picture him with this same disease. I'm sorry that you're facing such pain, and knowing, well this is a lifelong journey. I know it's not a real bright spot in your life.

My girlfriend's sister has Crohn's and she's about 52. When she was 25, she had her large bowel removed and began using the stoma (sorry if I said it wrong). Maybe that doesn't sound hopeful, but today she has 2 sons, 3 cats, and a loving family. Last year she had her first flare since she was 25. Hope is still alive for the sister; 27years after she got the same news that you got, Josh.

Back then, the medical knowledge was not as precise as it is today. My girl's sister survived and is having a better life today because she has this sheer determination that the disease would not define her - she wasn't going to allow Crohn's Disease to become her identity. I wish her diagnosis would have come today instead of 27 years ago, because when it onset, she was your age, Josh, and there wasn't near as much research and information as there is today.

I believe that there is always hope. I'm suggesting that you "workout" and "build up" your heart and soul on the hope and experience that is shared here. This disease is not easy, especially if you're an old coot like me who's sometimes set in his ways, pretending he's "superman" like I was when I was 20 years old. It took me 2.5 hours yesterday to vacuum and clean my living room and dust (yes I dust - probably my "inner female" at work). But I didn't finish dusting cuz I ran out of steam! Little "housecleaning" tasks like this used to take me only about 20 minutes at best, but it took me 2.5 hours.

I was in pain, my back was nagging me, and I was shaking hands with a toilet paper roll every hour while "dropping the kids off at the pool". I was fatigued, too, and had to rest every 15 minutes. I just shook my head and grit my teeth and did the work, slow as hell, but I started and got finished.

It took me some 30 years of work to get my life in decent shape. Now that my life is in pretty good order, it's comfortable to live in my own skin. Buddy let me tell you what, I'm not surrendering my life and what I've accomplished to this disease! Crohn's Disease is an illness of my body. It's physical for the most part, but it will try to get my mind too.

As long as I'm able and have breath left in me, I'm gonna give living my best effort. In fact I'm determined to make more of it. Sometimes its a tiny bit little each day, but it's my only life. It's up to me to make it a better life.

Thanks for joining and sharing,
Joseph
Wow, Regular Joe. That was so inspiring, for this newbie. Especially the part about having 27 years between flare-ups. I didn't know that was possible. Thanks for this, I'll try and hold onto it until some more results come through and we know how serious my case is.
 
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