Crohn's Patients

[trixx]

Just thought we needed a place for us to share some experinces, stories about MMJ, Rx'd meds, unexpected BM's and just other stuff. EDIT: UC people feel free to chime in too.

[thebigd^]

Yessir, I second this nomination. Anyone else here have Chrones or Ulcerative Colitis?

[JustChillin]

my doc originally treated me with IBS when i first got my card, but after a battery of tests it turns out i'm joining the ranks of Chron's sufferers. Gotta love MMJ though- i don't think i could live a normal life without it.

[Chronny215]

I don't have chrones, but a really close friend of mine through most of my childhood does, he was diagnosed in the 8th grade, and he was pulled out of school, we haven't heard from him since, he's been homeschooled since then because he was out for so long.

[thebigd^]

Originally Posted by JustChillin

my doc originally treated me with IBS when i first got my card, but after a battery of tests it turns out i'm joining the ranks of Chron's sufferers. Gotta love MMJ though- i don't think i could live a normal life without it.

smoking marijuana is the only thing that keeps me from the bathroom and the cramps.. also prednisone causes insomnia for a good period of time, so 1 MORE thing that it works for. plus when your hella sick and flaring you need food and nutrition so it works as an appetite stimulate as well

Originally Posted by Chronny215

I don't have chrones, but a really close friend of mine through most of my childhood does, he was diagnosed in the 8th grade, and he was pulled out of school, we haven't heard from him since, he's been homeschooled since then because he was out for so long.

welcome to my life. i left school at jr year. was suppose to do homeschooling ended up not. got a job been working ever since.

any of you guys heard about remicade? they want to start me on this, my Medicaid covers it

[floating_by]

I was diagnosed in November 2006. I'm flaring pretty bad right now. Lots of joint and muscle pains and having more and more trips to the restroom and lots of bleeding. Very tired. Still working a 40 hr/week job, but it is really hard to get up in the morning and get moving. I don't "LOOK" terribly sick, so it's hard for people to understand. I've tried different medications, but have not had much luck with them. They tend to give me worse diarrhea.

I also have Type I diabetes, and the prednisone and entocort make my bloodsugars uncontrollable, so I can't take those. Remicade has been mentioned many times by multiple docs (Gastro, Rheum, and Endocrinologist) but the side effects scare the bajeezus out of me. I saw that there is concern from the FDA now for young people and lymphoma as a side effect from Remicade. While I'm not a young person any longer (33) I have to think if its bad for young people that it can't be all that hot for anyone really. I have also read multiple accounts of people GETTING joint pains from Remicade. I already have severe joint pain, so I don't want it to get worse. I've had very bad experiences with doctors in my area so far. I had them wheel me into surgery for one thing, only for them not to perform the surgery and tell me I had Crohn's. Didn't exactly instill a lot of confidence in the med field for me. There has also been a lot of "trial and error" prescribing of drugs as well. I had my ankles swell to the size of softballs from Cipro. The doctors said that the drug couldn't possibly cause that. Just a week ago, I saw the FDA has blacklisted Cipro due to complications with the drug which cause tendon ruptures, specifically in the ankles. So I feel like the docs didn't care, were covering their asses, or are just generally clueless. Big phram scares the hell out of me now.

I hadn't given MJ a thought for many years, but saw that the MN bill was supposed to go up for a vote, and the local paper had an article. It mentioned Crohn's disease in the article, and it made me curious. I smoked recreationally back in the day and never had any physical problems with it, which is more than I can say of these drugs I've tried from the docs so far. I have a bag of MJ now and have tried it a few times. I have no tolerance any more, and it really makes me hella high. Its almost too much for me. Helps the pain in my joints a great deal. Being I have to get up every morning for work, I've also tried to limit how much I do. I probably need to smoke more to see if it will really benefit me. I think I need different MJ though, as this stuff makes my heart race something fierce. I sure hope the MN bill passes in 2009 so I can have access to different strains to try.

Sorry that was so long. I'm not "anti-doctor" or anything, and don't mean to scare people off from trying the different treatments. Just giving my story and why I am interested in trying MJ for my Crohn's. Glad to hear from others out there!

[thebigd^]

[quote=floating_by;2777537]I was diagnosed in November 2006. I'm flaring pretty bad right now. Lots of joint and muscle pains and having more and more trips to the restroom and lots of bleeding. Very tired. Still working a 40 hr/week job, but it is really hard to get up in the morning and get moving. I don't "LOOK" terribly sick, so it's hard for people to understand. I've tried different medications, but have not had much luck with them. They tend to give me worse diarrhea.


my hearts with ya buddy.

[ellz2thehead]

Yeah lets keep this thread going. It sucks to have Crohn's rep for anyone else that has to deal with that everyday. Its horrible, I cant gain weight and currently this week and can't keep anything down so i think i have to see my GI which I'm not excited about.

I've been through Remicade every which way and i had an allergic reaction about 9 times so thats not an option.

[thebigd^]

Originally Posted by ellz2thehead

Yeah lets keep this thread going. It sucks to have Crohn's rep for anyone else that has to deal with that everyday. Its horrible, I cant gain weight and currently this week and can't keep anything down so i think i have to see my GI which I'm not excited about.

I've been through Remicade every which way and i had an allergic reaction about 9 times so thats not an option.

man im hella afraid to do the Remicade. I did Colazal, Asacol, Sulfasalazine all three of then didnt work but made me EXTREMELY sick, and Sulfasalazine i ended up allergic to and put in the hospital. Prednisone also gave me a Perforated Ulcer.

What should I expect from Remicade?

[floating_by]

Originally Posted by ellz2thehead

Yeah lets keep this thread going. It sucks to have Crohn's rep for anyone else that has to deal with that everyday. Its horrible, I cant gain weight and currently this week and can't keep anything down so i think i have to see my GI which I'm not excited about.

I've been through Remicade every which way and i had an allergic reaction about 9 times so thats not an option.

Wow. I am sorry to hear that you are having so many problems. I'm lucky in that I can keep some weight on and eat. Most of my problems are way "down there."

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.

So glad this thread started. If people can describe how MJ has helped them with their Crohn's/Colitis, I would love to hear about it.

[floating_by]

Originally Posted by thebigd^

man im hella afraid to do the Remicade. I did Colazal, Asacol, Sulfasalazine all three of then didnt work but made me EXTREMELY sick, and Sulfasalazine i ended up allergic to and put in the hospital. Prednisone also gave me a Perforated Ulcer.

What should I expect from Remicade?

There's another forum called Healingwell.com that I've read a lot of peoples' accounts of Remicade. Allergic reactions seem to be pretty common with it. Some people report drug-induced Lupus. (All of this is on the manufacturer's web site.) Many people have to be treated with Prednisone prior to injections so that the allergic response is lessened. I guess you really don't know what to expect when taking it. I had the rheumatologist tell me that often times other drugs are still used in conjunction with it, such as Methotrexate, which is another immuno-suppressor. My grandmother was on that for rheumatoid arthritis. She cut her hand on her wheelchair and died from a blood infection as a result. Sounds like Remicade is much the same as far as dangers/side effects. I've pretty well decided I will do anything BUT these injectables. Too many unknown side effects and complications. My mom has rheumatoid and was told she wouldn't live 10 years without injectables. That was 12 years ago and she is doing pretty well all things considered.

I dunno... if the pills don't work and make a person sick, it seems to me something "stronger" isn't necessarily "better."

[trixx]

my GI pushes the same 3 meds constantly, remicade, imurane, and methotrexate. (dunno the name of the drug)

The Meth (haha, sorry) gave me some of the worst nasuea ever, not to mention i would have iron arm all the damn time. For a period of time after i dropped the meth i was on massive amounts of pot. and it helped SOOO much. I havnt smoked in over 2 months and it shows. Im doing horrible. I dont eat because i CANNOT keep it in me. Even if i just eat like 10 crackers I will be in the bathroom the rest of the night. And i am done fucking around w/ these doctors. Fuck there shit. Give South Carolina a damn MMJ law. Glad to see this thread benefitted people. One of the main effects on me is the mental. I feel like im not normal. And people wont understand. So i keep my disease under the table. People tell me im really skinny and small and it makes me want to die. Anyway, Keep the thread alive.

[thebigd^]

Originally Posted by trixx

. I feel like im not normal. And people wont understand. So i keep my disease under the table. People tell me im really skinny and small and it makes me want to die. Anyway, Keep the thread alive.

man i totally understand, dont help either that im 5'1 man if i were there id be smokin a fatty with ya cuz i forreal understand what it does. its like 5 minutes after you smoke you can eat, you can be active, you feel normal almost. it was awesome to hear my doctor up here in missouri tell me marijuana would benefit me. cant wait to move to colorado this november

[floating_by]

Originally Posted by trixx

my GI pushes the same 3 meds constantly, remicade, imurane, and methotrexate. (dunno the name of the drug)

The Meth (haha, sorry) gave me some of the worst nasuea ever, not to mention i would have iron arm all the damn time. For a period of time after i dropped the meth i was on massive amounts of pot. and it helped SOOO much. I havnt smoked in over 2 months and it shows. Im doing horrible. I dont eat because i CANNOT keep it in me. Even if i just eat like 10 crackers I will be in the bathroom the rest of the night. And i am done fucking around w/ these doctors. Fuck there shit. Give South Carolina a damn MMJ law. Glad to see this thread benefitted people. One of the main effects on me is the mental. I feel like im not normal. And people wont understand. So i keep my disease under the table. People tell me im really skinny and small and it makes me want to die. Anyway, Keep the thread alive.

What is "iron arm?" Stiffness in the joints?

Have you tried modifying your diet? I also have Celiac Disease and have not eaten anything with gluten in it for about 8 years now. Often times, people with Crohn's tend to be gluten intolerant as well. Dairy seems like a problem for some as well.

I know what you mean about feeling different, believe me. The social aspect, or lack thereof, can be the worst part.

[ellz2thehead]

A lot of the medications availiable for us are based off of the 6 MP/ Remicade drug. That goes along with methotrexate and humira. all have the same side effects, and i hate to say i havent seen much else happen in the field. It's terrible for a patient like me that doesn't get the relief from those drugs.

Yeah im pluggin along on a basic liquid diet this week. and its catching up with me. somethings gotta give this weekend so i can eat a damn meal