Crohn's Patients

[1blood1life]

Another Crohnie here...I was diagnosed two and a half years ago at 16. It's summertime, which means flares for me too. At the moment, I've been without more than 1000 calories total in a day, the majority of that is liquid, for 8 days. For some reason, everything else is staying quiet again after moving my Humira up to once a week, but this nausea and vomiting is taking its toll on me. I've been smoking a few times a day to minimize the nausea, unfortunately, it hasn't helped me keep anything down.

As for Remicade, I was on it for almost a year, and it helped me tremendously after figuring out that I just needed it every 6 weeks instead of 8, which is the norm. But, last summer, I ended up having a lupus-like reaction to an infusion because I started flaring again, and my GI doubled my dose. I've been on Humira since.

[thebigd^]

Any of you guys have seirous issues with sleeping the entire night through? Come to think about it in three years I have not gone a night with out waking up multiple times unless ive either been shit faced drunk, taken a bunch of xanax and smoked on em, or takin a seroquil. I also realize the the mornings are the worst time for me when it comes to bathroom trips. The night time is bad but not quite. I do well during the day if my body is active. Sometimes at work if I lift something heavy or bend down to fast I get a cramp. What can I do about getting a good nights sleep? Also I dont know if you guys are familar with perferated ulcers but that may be a cause of why laying in certian postitions cause cramps more then others.

Just for a grin heres a picture of after the surgery I had from the Perferated Ulcer



8/16 staples I had

[TDWPfan111]

I wasnt gonna register untill I saw this thread..I have crohns, missed my whole freshman year of high school.. the GI doctors of childrens hospital diagnosed me with it, gave me 6mp (still on it) and I forget the other one, I had to take 6 a day, and 1 6mp..

but I really had no improvement at all, it got to the point I couldnt even walk because of the pain, and the doctors told my parents that I was lying to them about the pain to get out of school..I told them I had no reason to not want to go to school and they called me a liar to my face.. 2 months later, when I couldnt even leave my room... they took me in for surgery, I dont know the name, but I just had a part of my intestine removed.. the surgeon said it was the worst case of inflamation he has ever seen..

since the surgery I rarely have any problems at all...when I do, they dont last long..

I honestly believe smoking will help me through any problems I have with crohns in my life, I have complete faith in MJ more then I do any GI doctor..

[thebigd^]

Originally Posted by TDWPfan111

I wasnt gonna register untill I saw this thread.

thats awesome homie. i know what its like to relate to others about this disease because, even though im not really embarrased, its just not a social topic.

[dle_240]

Originally Posted by TDWPfan111

I wasnt gonna register untill I saw this thread..I have crohns, missed my whole freshman year of high school.. the GI doctors of childrens hospital diagnosed me with it, gave me 6mp (still on it) and I forget the other one, I had to take 6 a day, and 1 6mp..

but I really had no improvement at all, it got to the point I couldnt even walk because of the pain, and the doctors told my parents that I was lying to them about the pain to get out of school..I told them I had no reason to not want to go to school and they called me a liar to my face.. 2 months later, when I couldnt even leave my room... they took me in for surgery, I dont know the name, but I just had a part of my intestine removed.. the surgeon said it was the worst case of inflamation he has ever seen..

since the surgery I rarely have any problems at all...when I do, they dont last long..

I honestly believe smoking will help me through any problems I have with crohns in my life, I have complete faith in MJ more then I do any GI doctor..

Welcome. And yes this is a great thread. It's good to know there are other people that are going through similar situaltions. So where you able to go back to school and everything? I left the middle of my tenth grade year. Some of my teachers were just going to fail me without even letting me turn in my work. And all they told me was 'Well you should have come up here sooner to turn in your work". It sucked the big one.

Oh and thebigd^, did that leave a scare?

[1blood1life]

Originally Posted by thebigd^

thats awesome homie. i know what its like to relate to others about this disease because, even though im not really embarrased, its just not a social topic.

I feel exactly the same way. I mean, I love being able to tell people what Crohn's is, how it can affect someone's life, etc. because I think it's a great educating opportunity, but at the same time, like you said, it's not a topic that can be brought up at any time.

[thebigd^]

Originally Posted by dle_240

Oh and thebigd^, did that leave a scare?

huge scar about 4 and a half inches long and about lil less then a half inch wide

[floating_by]

Originally Posted by 1blood1life

I feel exactly the same way. I mean, I love being able to tell people what Crohn's is, how it can affect someone's life, etc. because I think it's a great educating opportunity, but at the same time, like you said, it's not a topic that can be brought up at any time.

Definitely. I've had some people at work ask me about it at the lunch table and I have to tell them they don't want the details while they're eating. Talk to me after lunch.

Well, I smoked again last night. 3 nights in a row. 3 nights where my stomach was quiet and I was able to sleep through the night, all 3 nights about 9+ hours (damn this disease makes me tired!) I was able to walk my dog the last couple of days, and the trips to the bathroom have been less (only once today, yeah!) I'm getting more accustomed to the feeling of being high now, so it's not so weird anymore.

I saw it mentioned that summer time is worse for some people. I have to agree. Last July was pretty bad as I recall as well. Seems like abscesses want to form in the Spring and Summer for me.

[TDWPfan111]

Originally Posted by dle_240

Welcome. And yes this is a great thread. It's good to know there are other people that are going through similar situaltions. So where you able to go back to school and everything? I left the middle of my tenth grade year. Some of my teachers were just going to fail me without even letting me turn in my work. And all they told me was 'Well you should have come up here sooner to turn in your work". It sucked the big one.

Oh and thebigd^, did that leave a scare?

I ended up just returning to school the next year, had no choice really. my teachers were understanding..but still had to repeat the year..1 and 1/2 freshman years...what could be gayer. lol

and yeah its not a social topic at all, I dont think alot of people can really understand how bad it really is..

how much do you guys think/know MJ helps with your symptoms?

MA needs to become a medical marijuana state :]

[TheWiseOwl]

I was diagnosed nearly 8 years ago when I was 11. Through middle and high school I had to be hospitalized at least once a year to go on intravenous steroids to calm everything down. I also needed intravenous nutrition, at one point when I was 13 I weighed 50 pounds. I missed at least 50 days of school a year. Was on so many different medicines which had little to no help. Some, asacol, made me much worse.

Went on Remicade during junior year. Worked fairly well. But it stopped working after about a year. So I was moved onto Humira, which I'm still on. Humira and Remicade both eliminated the vomiting, and have almost eliminated the diarrhea. But I was still left with intermittent pain, cramps, and nausea.

I started at the University of Vermont last August, and subsequently started smoking marijuana. So now, with Humira twice a month and daily doses of weed, my only remaining symptom is occasional diarrhea.

[1blood1life]

Originally Posted by TDWPfan111

how much do you guys think/know MJ helps with your symptoms?

MA needs to become a medical marijuana state :]

I know for a fact that I would not be getting through the past 9 days with very little food + extreme nausea and vomiting, plus at least the next 5 days of the same until my doctor gets back into the States, without using MJ at least once a day.

I plan on telling him that straight out when I see him too. None of the other doctors he works with have offered to give me anything for the nausea, so what the hell else is someone supposed to do? Fingers crossed that MN becomes a medical state next legislative session and I'll have the backing of my doctor to use for that reason.

[thebigd^]

Originally Posted by TDWPfan111

how much do you guys think/know MJ helps with your symptoms?

MA needs to become a medical marijuana state :]

bro to sum it up, it works so well i feel like i felt before I had chrones. yes, sir.


edit: YOU HAVE NO CLUE HOW HAPPY I AM TO SEE THIS THREAD HAVE A LIFE. Im glad we have a place where we can all talk about this shit.. +rep to tr1xx

[bortron5000]

Originally Posted by floating_by

Remicade is scary stuff. I'm allergic to so many things, and I kept telling the doctors this. They just say, "It's generally well-tolerated." Bullshit. The various pills don't even agree with me, I don't wanna inject something into me that's there for 8 weeks. No way. What happens if I am allergic? No way to get it out of you. Remicade was the number one drug sales-wise last year for big pharm along with another similar drug, at the tune of $6 billion. The patent is running out soon with cheaper generics on the horizon, and all these doctors seem to want me to go on it really badly. Coincidence? I highly suggest anyone that is presented with this drug as a maintencance option do lots of reading. The word "death" appears a lot in the product warnings.

Wow i'd never heard of Crohn's disease before looking at this thread but the stuff you guys are talking about (especially the quote above) inspired me to wikipedia it and do a little research. It's interesting, cannabis got only one line in the treatment section, even though it seems like its helped a lot of you guys more than these other drugs. What a wack world we live in. All my best goes out to you on this thread. Stay strong, and fuck the man, do whatever you got to do.

[thebigd^]

Originally Posted by bortron5000

Wow i'd never heard of Crohn's disease before looking at this thread but the stuff you guys are talking about (especially the quote above) inspired me to wikipedia it and do a little research. It's interesting, cannabis got only one line in the treatment section, even though it seems like its helped a lot of you guys more than these other drugs. What a wack world we live in. All my best goes out to you on this thread. Stay strong, and fuck the man, do whatever you got to do.

man i respect you for doing what you did man. at least me, i cant speak for the others on this thread, but i never meet anyone who does more then listen to what i say, like care or ask questions, and certainly never do any reading about it. after a long day at work, you seriously made my day man. +rep

[dle_240]

Originally Posted by TDWPfan111

I ended up just returning to school the next year, had no choice really. my teachers were understanding..but still had to repeat the year..1 and 1/2 freshman years...what could be gayer. lol

and yeah its not a social topic at all, I dont think alot of people can really understand how bad it really is..

how much do you guys think/know MJ helps with your symptoms?

MA needs to become a medical marijuana state :]

Well on the first semestier of 11 th grade I missed a lot of school from being so sick. The teacher gave me some of my work. When I got back to school they told me I had to take all of my finals (which I hadn't even gotten all my work from my teacher) in the machup time they had. Which was 4 hours. They when I tried to hand in my work to my teacher, they just gave me my progress report for that last simester and I failed everything. It turned into this huge thing and they just withdrew me from school back to where my grades where at the end of 10th grade. So I just did home schooling and finish up like that.