Crohn's Patients

[Erin]

This is my first post
My name is Erin I haven't even set up my profile yet NEWBIE ALERT!!!!!!
anyhow I've been raised in a very liberal state and grew to love smoking pot as a teenager. I have always been in the workforce and productive self supporting sometime in my 20s i got married and had a kid ...... Max has oodles of colon proplems since birth at age 13 max got very very sick we were in Alabama at the time doctors put him on all kinds of antibotics and crap flagyl he quit eating and "cancer" was eating his insides I told the doctors look at his guts he was down to 65 pounds frail i couldn't stand it. the surgeon removed his spleen damaged by the infection and tested it for hodgkins thankfully he did not have cancer I begged the doc to look at his colon ......
yep he has chrons .... max has done well on asacol he is 20 now he always hates the amount of pills he has to take always nagging hating .... when max turned 18 he started smoking pot he quit taking his other meds I qit nagging and hating he has been doing extremly well for the most pert I tink the stress factor is so crucial.
So Just Chill eat what u can smoke a joint dont worry with the people that don't understand and give him his own bathroom lol

[NiteFire77]

This really sucks. I've had 2 week long hospital visits, both in less then a month.
I'm out again now, and my fuckin stomach is paining me, and making loud noises as it pushes the VERY little food Ive eaten through painfully. I'm on prednisone, 100mg of imuran, other anti-biotics, and I'm being very careful with what I eat and still get nothing but trouble.

I was prescribed dilaudid for the pain, but I really dont want to have to rely on that for the rest of my life. I'm enrolled at school to get my RN so I can help others... and I'd really like to not be in constant pain all the time while doing so

[RAMOS]

Originally Posted by NiteFire77

This really sucks. I've had 2 week long hospital visits, both in less then a month.
I'm out again now, and my fuckin stomach is paining me, and making loud noises as it pushes the VERY little food Ive eaten through painfully. I'm on prednisone, 100mg of imuran, other anti-biotics, and I'm being very careful with what I eat and still get nothing but trouble.

I was prescribed dilaudid for the pain, but I really dont want to have to rely on that for the rest of my life. I'm enrolled at school to get my RN so I can help others... and I'd really like to not be in constant pain all the time while doing so

Did they tell you exactly what you have though?

I'm going to get my RN as well


Honestly guys and girls, I know people react differently to different things or whatever, but taking Mercap and Lialda with a side of cannibus gives me NO pain and very rarely do I flare up.. But I have UC, not Crohns.

Good luck and keep us posted!

[NiteFire77]

I have crohns, and while I do enjoy smoking, I have stopped, cause the place I want to work is a drug free envireonment, with frequent tests, and The feeling of helping others in the hospital setting gives me a better feeling then getting high ever could

[RAMOS]

Originally Posted by NiteFire77

I have crohns, and while I do enjoy smoking, I have stopped, cause the place I want to work is a drug free envireonment, with frequent tests, and The feeling of helping others in the hospital setting gives me a better feeling then getting high ever could

Thats awesome! Congrats dude.

[1blood1life]

Well guys, I'm approaching 6 months on no Crohn's meds after quitting Tysabri back in January. Thankfully, it's been going well. Actually, it's going much better than I'd even expected, and considering that I was thinking about stem cell trials a matter of months ago, I'm going to keep riding this wave out.

Hope everybody else is well!

Originally Posted by RAMOS

Honestly guys and girls, I know people react differently to different things or whatever, but taking Mercap and Lialda with a side of cannibus gives me NO pain and very rarely do I flare up.. But I have UC, not Crohns.

Good luck and keep us posted!

You're lucky! I wish I could take a few pills a day, smoke a bit, and have no problems. Not that I should be complaining, as I'm feeling pretty good on nothing for the Crohn's and Marinol for the nausea/vomiting I've struggled with for close to a year now. I know there's something similar to Asacol (which is the same as Lialda, I've gathered from here, right?) more for Crohn's patients called Pentasa. I've never taken it, since at my diagnosis, I was apparently inflammed enough to skip that medication step, but there's a lot of people who take it and can manage their Crohn's with it pretty well.

Originally Posted by NiteFire77

I have crohns, and while I do enjoy smoking, I have stopped, cause the place I want to work is a drug free envireonment, with frequent tests, and The feeling of helping others in the hospital setting gives me a better feeling then getting high ever could

Congrats!! That's an amazing career choice, and I'm glad that you're happy doing it! I'll spark my next bowl for you.

[TheWiseOwl]

god... i feel like shit this morning. and I'm unemployed and supposed to be riding around town on my bike trying to get a job. so i'm smoking to help with the pain and nausea, but i want to conserve my pot b/c i'm unemployed and i need to pay rent next week; i need this bag to last until i find a job.

what is everyone's diets like? i need more protein but i find meat to be too heavy, peanut butter is boring me, and i'm not drinking any of those fucking health/nutrition drinks.

[ModderXtr]

Ramen based recipies are both endless and delicious, maybe look into that if peanut butter is boring you. (I used to eat a PB&J every night haha, I understand how it can get boring)

For example though, after you have the noodles softened, crack two eggs into a bowl and wisk them up. Pour into the ramen, stir, and when the eggs are cooked strain the extra water out of the noodles and viola. Egg drop ramen noodles.

Its pretty tasty tbh and my stomach doesnt mind soft noodles or eggs.

[chronictonic]

Originally Posted by 1blood1life

Well guys, I'm approaching 6 months on no Crohn's meds after quitting Tysabri back in January. Thankfully, it's been going well. Actually, it's going much better than I'd even expected, and considering that I was thinking about stem cell trials a matter of months ago, I'm going to keep riding this wave out.

Hope everybody else is well!



You're lucky! I wish I could take a few pills a day, smoke a bit, and have no problems. Not that I should be complaining, as I'm feeling pretty good on nothing for the Crohn's and Marinol for the nausea/vomiting I've struggled with for close to a year now. I know there's something similar to Asacol (which is the same as Lialda, I've gathered from here, right?) more for Crohn's patients called Pentasa. I've never taken it, since at my diagnosis, I was apparently inflammed enough to skip that medication step, but there's a lot of people who take it and can manage their Crohn's with it pretty well.



Congrats!! That's an amazing career choice, and I'm glad that you're happy doing it! I'll spark my next bowl for you.

My doc switched me to Pantasa this last doctor visit. I was taking 6 Asacol a day. Now im taking 16 Pantasa 250mgs daily. He also said something about trying biologics. I was only diagnosed a month or so ago; is it too quick ya think to try these drugs out?

[MPower420]

Originally Posted by NiteFire77

I have crohns, and while I do enjoy smoking, I have stopped, cause the place I want to work is a drug free envireonment, with frequent tests, and The feeling of helping others in the hospital setting gives me a better feeling then getting high ever could

i totally understand. im a paramedic/firefighter by trade and i know exactly what youre talkin about. then again, i still like to smoke a fat cone after a long shift yay for no random DTs!!

[1blood1life]

Originally Posted by chronictonic

My doc switched me to Pantasa this last doctor visit. I was taking 6 Asacol a day. Now im taking 16 Pantasa 250mgs daily. He also said something about trying biologics. I was only diagnosed a month or so ago; is it too quick ya think to try these drugs out?

In my opinion, it all depends on how you feel, both physically and mentally. If your disease is being controlled enough with Pentasa, I'd stick with it until it doesn't work anymore. If your quality of life straight up sucks and other meds aren't helping, then yes, definitely discuss biologics with your GI. There are really serious side effects to them though as well, which you have to weigh against your current situation. The biologics in general are great, and I did start them just a few months after being diagnosed, but then in just over two years since then, I had run through nearly all of them, and the last one that I could start, Cimzia, has a very, very low chance of putting me in remission because of my previous exposure to/use of the same class of biologics, TNF blockers (Remicade and Humira).

[ModderXtr]

Bump..

On probation so I cant have my meds now. Gonna see if I can get marinol from my doctor atleast till 6 months time passes.

[floating_by]

Originally Posted by chronictonic

My doc switched me to Pantasa this last doctor visit. I was taking 6 Asacol a day. Now im taking 16 Pantasa 250mgs daily. He also said something about trying biologics. I was only diagnosed a month or so ago; is it too quick ya think to try these drugs out?

I think it's too soon. The biologics are kind of a "last resort" so to speak. Many people can get things in control with just the more "traditional" drugs. How have things been going so far? Asacol not working?

[oldcripplefuk]

Hey all

Just wanted to chime in with my Chron's experience. Its a doozy.

Got diagnosed last year when i "evacuated" some bits and pieces that, apparently, aren't supposed to be "evacuated". that was after 7 ER visits where they told me it was just gas. So they had to urgently remove my ileum and appendix(it got infected) and wash out my abdominal cavity.

Apparently i had been brewing this chron's brew for about 10 years and just kind of ignored all the warning signs until my body just failed. I spent 3 months total in the hospital, i had the surgery and got released about 1.5 months later then th day i got home i went to bed and woke up...with my guts out...so i wrapped em up in a towel and put my little post op brace around it and drove to the hospital.

I waited in the ER waiting room for about an hour bleeding all over with sick kids coughing on me and people looking at me weirdly. Then they admitted me and my surgeon come in and is all like "back so soon, lol" and im like "bleeaaarrrrrgh, more meds NOW!", so he gives me dilaudid and proceeds to stick his hand into my stomach to find the hole in the fascia where all my guts leaked out of.

Another month and a half and i'm let out of the hospital. I haven't stopped pooping since, seriously i've lost about 120 pounds since i had the surgery.
Nothing works except weed and percocet which gives me cramps after the 5th day of no poopin.

At least i got a sweet job at ATT doing line work and they dont DT at all so i work with all my dealers.

sorry for the rant but i really hate this disease, its made me and my wife miserable for the past year......and my butt hurts alot

[TheWiseOwl]

wow, that's a hell of a story... sounds far, far worse than I've ever been. You're in New London, CT? I grew up in Montville. I wish I could reccomend a specialist in the area, but the only ones I ever saw in CT were pediatric.