Crohn's Patients

[PuRe CaNNaBLiSS]

trixx


i can connect with you bro. i just graduated highschool, im a freshman in college now. i go out to parties and its like you just dont feel what the other people feel. because your forced to become more emotionally mature. they wouldnt understand what its like to have to have full life insurance since you were 16. they havnt had to cope with the stresses that go through your mind every night. personally i put up walls like you wouldnt believe. all i gotta say is dont put those walls up, your friends will start backin down to the wall thinking that they cant climb over, and before you know it, you'll be left in the dark alone. thats not what you want. on another note you will find out who you're true friends are, with my crohns i have found a couple friends that i know will stand behind me to the end. and for that im thankful. there isnt much to life if you dont have good friends. the ones that will stand by you until the end.

and as for the highschool kids being immature or not on your level, remember that ignorance is bliss. many of those kids havnt had their eyes opened up to the real world, and they think its all about 5 dollar cups at keg night. theres really so much more to it than that, and just remember that everyone in this thread has thought the same thing, and had many of the same feelings. this is the hand that you were delt, and you gotta play it. and remember that there is always an upside to a down. things will get better. juts keep your head up!

PuRe CaNNaBLiSS

[1blood1life]

Originally Posted by trixx

1blood1life, im sorry things have been going shitty for you lately, hope that the stem cells work,

But there is something that has been bothering me lately.

I go to partys, hang out with my friends, and chill with new people a lot. I just dont feel like i connect with people anymore. People will talk to me and i just have little or no interest in talking to them. Not only do i not have interest, sometimes it actaully kinda pisses me off having to listen to them. Even my best friends, i just kinda half-way listen and dont really care.

I never used to be like this, i used to be into what people were saying, i used to feel connected, i used to feel closer to people. Maybe its the fact that ive been forced to grow up faster than most. i feel superior to what people are saying and that i am above them. that i am more mature and grown up for there childish ways.

Im a senior in high school and i just have no interest in high-school life, i constantly wish that i was out of school and working a job, renting an apartment, and out on my own. I feel im to mature for high-school, im ready to enter the real world. My grades have dipped a little lower than normal b/c i have no interest in these worthless lessons i am tought daily.

I feel like i see the big picture in life, and all the people im surronded by are cought up in the moment, and rush of things.


maybe its all the years of anxiety, worring about whether my stomach is gunna be upset at class, or at a girls house, or in public, or wondering if this medication is gunna work, or what if i get this side effect.

I just feel numb, kinda like a body with no soul. disconnected. showing no emotion.

I feel the only way i connect with people is when we get high toghether. i feel like the social walls are broken.



i'll be more active on this thread now as i have more time to be.

Trixx, thanks for the good vibes! I appreciate them a ton!

I'm actually not doing THAT badly (though if I hadn't gone back to blazing, I wouldn't be nearly as well)...my guts aren't happy about being unmedicated, but they're making it through. I'm going to call to schedule my screening appointment for the stem cell trial in the next week or so. April 14th is the big 90 day mark off of Tysabri, and then I should be eligible.

As for what you're talking about, I know EXACTLY how you feel. I'm a sophomore in college now, but I was a junior in high school when I got diagnosed. I was already kind of mature for my age, but being told you have a chronic disease that's going to be with you for decades at the age of 16 really does make you grow up and grow up fast, at that.

My junior year reinforced for me how much I hated high school life. I couldn't deal with it because what I was doing in classes was useless and pointless, especially when I got bored by classes, plus the people got on my nerves because they're always focused on the wrong things, you said childish, and I think that describes high schoolers pretty well.

What I did was left for my senior year and went to a college nearby instead. Luckily, in Minnesota, the state will pay for your tuition and books if the college accepts you. So, I did that and loved it so much more. It was by far one of the best decisions I've made in my life. Now, being at college, I can honestly say that I'm a much, much, much happier person. I have friends who are adults and mature and can have intelligent conversations and will stick by me through anything. I have professors who are intellectually stimulating and genuinely interested in seeing me succeed academically (which wasn't so much the case in high school, I feel like, because teachers were more focused on making sure all of the students passed the class instead).

It gets better, that's my main point. High school's a joke. I don't know why people say those are the best years of your life, because they were clearly the worst for me.

[trixx]

Originally Posted by 1blood1life

Trixx, thanks for the good vibes! I appreciate them a ton!

I'm actually not doing THAT badly (though if I hadn't gone back to blazing, I wouldn't be nearly as well)...my guts aren't happy about being unmedicated, but they're making it through. I'm going to call to schedule my screening appointment for the stem cell trial in the next week or so. April 14th is the big 90 day mark off of Tysabri, and then I should be eligible.

As for what you're talking about, I know EXACTLY how you feel. I'm a sophomore in college now, but I was a junior in high school when I got diagnosed. I was already kind of mature for my age, but being told you have a chronic disease that's going to be with you for decades at the age of 16 really does make you grow up and grow up fast, at that.

My junior year reinforced for me how much I hated high school life. I couldn't deal with it because what I was doing in classes was useless and pointless, especially when I got bored by classes, plus the people got on my nerves because they're always focused on the wrong things, you said childish, and I think that describes high schoolers pretty well.

What I did was left for my senior year and went to a college nearby instead. Luckily, in Minnesota, the state will pay for your tuition and books if the college accepts you. So, I did that and loved it so much more. It was by far one of the best decisions I've made in my life. Now, being at college, I can honestly say that I'm a much, much, much happier person. I have friends who are adults and mature and can have intelligent conversations and will stick by me through anything. I have professors who are intellectually stimulating and genuinely interested in seeing me succeed academically (which wasn't so much the case in high school, I feel like, because teachers were more focused on making sure all of the students passed the class instead).

It gets better, that's my main point. High school's a joke. I don't know why people say those are the best years of your life, because they were clearly the worst for me.

Thanks for those words of wisdom. i guess i just gotta stick with it thru all the BS for the rest of the year.


Anyway, i had this like bug bite on my face the other day, and i scratched it. And it got really read and swollen and my right eye is like swollen shut. I went to the dr and they gave me some topical medicine and an antibiotic. its really painful and its like full of this puss/juice stuff. I told the dr i didnt want to go on an antibiotic and that cant they just drain it out. She say'd she wouldnt do it. but she would refer me to a surgeon. made me made, she is supposed to do shit like this. not just write Rx. but i guess this is the new age of doc's just write Rx's and reffer people.

but she said it was staph. soo, i hope it gets better soon. there is so much pressure on my damn eye/

Hope everyone is doing better than i am.

have a good one guys,

[1blood1life]

Originally Posted by trixx

Thanks for those words of wisdom. i guess i just gotta stick with it thru all the BS for the rest of the year.


Anyway, i had this like bug bite on my face the other day, and i scratched it. And it got really read and swollen and my right eye is like swollen shut. I went to the dr and they gave me some topical medicine and an antibiotic. its really painful and its like full of this puss/juice stuff. I told the dr i didnt want to go on an antibiotic and that cant they just drain it out. She say'd she wouldnt do it. but she would refer me to a surgeon. made me made, she is supposed to do shit like this. not just write Rx. but i guess this is the new age of doc's just write Rx's and reffer people.

but she said it was staph. soo, i hope it gets better soon. there is so much pressure on my damn eye/

Hope everyone is doing better than i am.

have a good one guys,

Exactly, you've only got a few months left, just sail through them!

Yikes, that sounds like it sucks, hope you're feeling better soon!



P.S. I got a script for Marinol, FINALLY. I put it all out on the table to my doc, and I told him that I at least wanted to give it a try because I'd rather take that than smoke, which does damage my lungs. Apparently, he was finally okay with it enough to let me try. Going to pick it up at the pharmacy this morning...best part though? No copay!! Free THC!

[trixx]

Originally Posted by 1blood1life

P.S. I got a script for Marinol, FINALLY. I put it all out on the table to my doc, and I told him that I at least wanted to give it a try because I'd rather take that than smoke, which does damage my lungs. Apparently, he was finally okay with it enough to let me try. Going to pick it up at the pharmacy this morning...best part though? No copay!! Free THC!

thats awesome. let us know how it goes! and if it works!

[ardne]

Originally Posted by trixx

wow guys its been a while,

1blood1life, im sorry things have been going shitty for you lately, hope that the stem cells work,

floating_by, glad to hear everything is going well for you and u are able to get out and play golf again.

Got my 5th remicade infusion on thursday, everything is becoming rotuine now. Getting it done doesnt seem so abnormal.

Inbetween my infusions, i came down with a bad cold. went to the doc and he gave me some cough medicine cuz i told him i didnt wanna be on anti-biotics cuz they mess up my crohn's. Went back a week later and HAD to take them cuz i was getting really sick.

I lost a few pounds because of it but im feeling better and gaining weight.

Life has been real tough on me lately, school is getting harder and harder, im out a lot with being sick cuz the remicade lowers my immune system, so everytime i get sick i try to sleep it off so it doesnt turn bad.


But there is something that has been bothering me lately.

I go to partys, hang out with my friends, and chill with new people a lot. I just dont feel like i connect with people anymore. People will talk to me and i just have little or no interest in talking to them. Not only do i not have interest, sometimes it actaully kinda pisses me off having to listen to them. Even my best friends, i just kinda half-way listen and dont really care.

I never used to be like this, i used to be into what people were saying, i used to feel connected, i used to feel closer to people. Maybe its the fact that ive been forced to grow up faster than most. i feel superior to what people are saying and that i am above them. that i am more mature and grown up for there childish ways.

Im a senior in high school and i just have no interest in high-school life, i constantly wish that i was out of school and working a job, renting an apartment, and out on my own. I feel im to mature for high-school, im ready to enter the real world. My grades have dipped a little lower than normal b/c i have no interest in these worthless lessons i am tought daily.

I feel like i see the big picture in life, and all the people im surronded by are cought up in the moment, and rush of things.


maybe its all the years of anxiety, worring about whether my stomach is gunna be upset at class, or at a girls house, or in public, or wondering if this medication is gunna work, or what if i get this side effect.

I just feel numb, kinda like a body with no soul. disconnected. showing no emotion.

I feel the only way i connect with people is when we get high toghether. i feel like the social walls are broken.



i'll be more active on this thread now as i have more time to be.

Hey Trixx, I know the others have responded wonderfully to your post, but I still wanted to share some thoughts too. I definitely appreciate what you are saying/feeling. The feelings of alienation and withdrawal, and feeling out of place. I'm only 21, so not that far ahead of you. Started getting sick all the time once I hit 15/16 and finally got Dx'ed last year. It forced me to grow up a lot, but it also did numbers to my self esteem and my feelings of being totally at a different place in my life. Everything changes when you're young and have got a serious chronic illness and it seems like everyone around you still thinks, "I'm young, I'm invinsible!" Talk about being on a different page.

Since diagnosis, I've spent the last year doing a lot of soul-searching. I've rid myself of relationships that weren't beneficial to my life, and I've tried harder to keep in touch with the awesome people in my life. But it has meant a lot of social upheaval. I feel pretty lost right now, and sometimes the loneliness seems overwhelming.

I guess I vented more than anything, but I want you to know you're not alone. Please remember that. There have got to be more of us out here, hopefully you will be able to find some people that you connect with more and maybe appreciate your experiences. Getting out of high school probably will be great for you. Like others have said, I too had an absolutely horrible time in high school. Life is a LOT better afterwards. In my experience, once you're done with high school, age isn't as relevant as it used to be. That makes it easier to seek out more mature folks.

Hang in there! I hope you find some clarity and comfort. It may take some time, but I trust you will.

[trixx]

Originally Posted by ardne

Hey Trixx, I know the others have responded wonderfully to your post, but I still wanted to share some thoughts too. I definitely appreciate what you are saying/feeling. The feelings of alienation and withdrawal, and feeling out of place. I'm only 21, so not that far ahead of you. Started getting sick all the time once I hit 15/16 and finally got Dx'ed last year. It forced me to grow up a lot, but it also did numbers to my self esteem and my feelings of being totally at a different place in my life. Everything changes when you're young and have got a serious chronic illness and it seems like everyone around you still thinks, "I'm young, I'm invinsible!" Talk about being on a different page.

Since diagnosis, I've spent the last year doing a lot of soul-searching. I've rid myself of relationships that weren't beneficial to my life, and I've tried harder to keep in touch with the awesome people in my life. But it has meant a lot of social upheaval. I feel pretty lost right now, and sometimes the loneliness seems overwhelming.

I guess I vented more than anything, but I want you to know you're not alone. Please remember that. There have got to be more of us out here, hopefully you will be able to find some people that you connect with more and maybe appreciate your experiences. Getting out of high school probably will be great for you. Like others have said, I too had an absolutely horrible time in high school. Life is a LOT better afterwards. In my experience, once you're done with high school, age isn't as relevant as it used to be. That makes it easier to seek out more mature folks.

Hang in there! I hope you find some clarity and comfort. It may take some time, but I trust you will.

thanks.

[1blood1life]

Originally Posted by trixx

thats awesome. let us know how it goes! and if it works!

I've been taking it for a few days now, and it does, in fact, work!

But, I can see where the arguments and criticisms of the drug come from. For instance, it's a very, very different high...extremely clear-headed, sort of like an edible high, but even different from that, since it's just THC, and not all the other cannabinoids. And, for a lot of patients this is prescribed for, taking a pill to stop nausea isn't going to work. Luckily, I can usually wait an hour or so until it fully kicks in without vomiting it up. And, yes, it does feel synthetic, in a way. There's a more steady, smooth kind of relief, rather than the big peaks and lows that smoking can give. For me though, all of those are benefits to the drug, not negatives.

[NiteFire77]

Ive been goiung through a flareup, and Ive been taking morphine for the pain. Someone said morphine slows the intestines and isnt good for helping a flareup. Is this true? The morphine helps the pain, but I dont want it to keep the intestines flared in the long run

[floating_by]

Originally Posted by NiteFire77

Ive been goiung through a flareup, and Ive been taking morphine for the pain. Someone said morphine slows the intestines and isnt good for helping a flareup. Is this true? The morphine helps the pain, but I dont want it to keep the intestines flared in the long run

I think that is true. Anything opioid-based is going to slow things down.

[NiteFire77]

Right now its all I have to stop the pain.
Hacnt taken any yet today but I dunno how much pain I can take before I need it again. Its so bad right now I wanna cry

[trixx]

Originally Posted by NiteFire77

Right now its all I have to stop the pain.
Hacnt taken any yet today but I dunno how much pain I can take before I need it again. Its so bad right now I wanna cry

How much pain does the weed take away? I would try to stay off morphine if all possible. try edibles if you cant smoke all day long.

[NiteFire77]

This really sucks.
If I eat I'm in pain, If I dont eat, I'm still in pain. I drive a forklift at work, and bouncing around on that really aggravates me. Lying down, I dont have severe pain but its still there.
I havnt eaten any rough foods or dairy, Lots of soup, Jello and juice. Yet for some reason it wont go away. its been like this for 2 weeks now. Why am I being punished like this? Ive had crohns for awhile now and nothing like this has happened before

[ModderXtr]

Originally Posted by NiteFire77

Ive been goiung through a flareup, and Ive been taking morphine for the pain. Someone said morphine slows the intestines and isnt good for helping a flareup. Is this true? The morphine helps the pain, but I dont want it to keep the intestines flared in the long run

When I first got put on Remicade, I went through ridiculous pain, and my doctor prescribed me Hydrocodone and Promethazine. So I don't think that Opioids are gonna be bad for you.

Now Im on Entecort, Remicade, and Marijuana.

If I eat I'm in pain, If I dont eat, I'm still in pain. I drive a forklift at work, and bouncing around on that really aggravates me. Lying down, I dont have severe pain but its still there.
I havnt eaten any rough foods or dairy, Lots of soup, Jello and juice. Yet for some reason it wont go away. its been like this for 2 weeks now. Why am I being punished like this? Ive had crohns for awhile now and nothing like this has happened before

Sounds like you're going through a flare-up, and you should definetly go see your doctor and get on some meds to get it under control.

[NiteFire77]

I went to the doc earlier in the week, and they juwst said keep taking the pentasa. So Thats all Ive been doing, and watching what I eat. I'm glad I have the weekend to rest