Crohn's Patients

[TheWiseOwl]

No, i was on the syringes first then switched to the pens. it didnt matter how fast or slow the injection went (when I was on the syringe), it hurts for several hours anyway it goes in. sometimes it's so bad I have to bite a pillow to sto pfrom screaming when it's being injected. i've been on it for 2.5 years now and I worked with a pain management nurse for a long time trying to figure out the best way to get it. never found a good method.

[ModderXtr]

Originally Posted by TheWiseOwl

No, i was on the syringes first then switched to the pens. it didnt matter how fast or slow the injection went (when I was on the syringe), it hurts for several hours anyway it goes in. sometimes it's so bad I have to bite a pillow to sto pfrom screaming when it's being injected. i've been on it for 2.5 years now and I worked with a pain management nurse for a long time trying to figure out the best way to get it. never found a good method.

Have you tried remicade? Its atleast through an IV and sounds less painful than humira.

Ive never had humira though, only remicade.

[TheWiseOwl]

remicaide worked nicely, then I built up antibodies against it. now it doesnt work.

[ModderXtr]

I hope I don't build up any antibodies to it..shit.

Ever heard of Etanercept? I don't have any personal experience with it, just remicade, but it's another one of the TNF blocking drugs. Might be less painful than humira. It's different from the other two because it's a "circulating receptor fusion protein" instead of a monoclonal antibody.

[1blood1life]

Originally Posted by TheWiseOwl

No, i was on the syringes first then switched to the pens. it didnt matter how fast or slow the injection went (when I was on the syringe), it hurts for several hours anyway it goes in. sometimes it's so bad I have to bite a pillow to sto pfrom screaming when it's being injected. i've been on it for 2.5 years now and I worked with a pain management nurse for a long time trying to figure out the best way to get it. never found a good method.

Wow, that sucks. Do you ice the area before doing them too?

[1blood1life]

Originally Posted by ModderXtr

I hope I don't build up any antibodies to it..shit.

Ever heard of Etanercept? I don't have any personal experience with it, just remicade, but it's another one of the TNF blocking drugs. Might be less painful than humira. It's different from the other two because it's a "circulating receptor fusion protein" instead of a monoclonal antibody.

Not to be a downer or anything, but most people do build up antibodies to Remicade eventually. Now, whether it's years down the line or soon depends. Some people just build them quickly. I didn't even get a year out of Remicade or Humira, about 9 months on each, before they stopped working and/or I had a reaction.

Also, Enbrel, the name brand of that drug you posted, isn't effective for Crohn's patients, even though it's a TNF blocker; they've tried getting FDA approval for Crohn's for it, but it just doesn't work. Weird, huh? Cimzia is the other TNF blocker that is approved for Crohn's. It's the only one I haven't been on, but when I was debating between stopping Tysabri, starting Cimzia, or being on nothing, my GI informed me that the chances of Cimzia putting me in remission after being on 2 other TNF blockers was about 20%. To get any response whatsoever was 30-40%. Each time you start another TNF blocker, it's harder and harder to get a response.

[TheWiseOwl]

Originally Posted by 1blood1life

Wow, that sucks. Do you ice the area before doing them too?

icing helps with the needle prick and helps with the initial burning of the injection but then as the medicine goes deeper the pain goes deeper, below the area which was numbed. It hurts down in the muscle an inch or two deep.

Originally Posted by 1blood1life

Also, Enbrel, the name brand of that drug you posted, isn't effective for Crohn's patients, even though it's a TNF blocker; they've tried getting FDA approval for Crohn's for it, but it just doesn't work. Weird, huh? Cimzia is the other TNF blocker that is approved for Crohn's. It's the only one I haven't been on, but when I was debating between stopping Tysabri, starting Cimzia, or being on nothing, my GI informed me that the chances of Cimzia putting me in remission after being on 2 other TNF blockers was about 20%. To get any response whatsoever was 30-40%. Each time you start another TNF blocker, it's harder and harder to get a response

that really sucks to hear about TNF blockers. I was happy to know there was one more which I could go on, but now...... what'll I do if Humira no longer works? For all the pain it's caused me, it's kept me out of the hospital for the past 2.5 years (well, Humira and ). Prior to Humira I didn't go a full year without at least a week of hospitalization.

[ModderXtr]

that really sucks to hear about TNF blockers. I was happy to know there was one more which I could go on, but now...... what'll I do if Humira no longer works? For all the pain it's caused me, it's kept me out of the hospital for the past 2.5 years (well, Humira and ). Prior to Humira I didn't go a full year without at least a week of hospitalization.

definitely helps my crohns as well. I feel that if I had a reliable source, or could grow my own, I wouldn't even need Remicade. I believe I could sustain a remission with cannabis alone. Sucks too cause insurance might be going away soon..

[RAMOS]

I have UC. I'm on Lialda and Mercaptopurine. Shit blows.

I'm glad I'm not the only one here in a way though, LOL. And the reefer helps me in my flare ups.

[SouthrnSmoke]

I have Ulcerative colitis, and i feel deep sympathy for anyone with uc and an even deeper sympathy for anyone with chrons

I have a pretty good doctor where i am that i go to when i need to. WHen i first got diagnosed i never heard of UC or chrons, and i though i had a bad infections that was just NOT going away. While i did have an infection ( which is bound to happen when you have ulcers in your bowels) I also Found Out i had UC and immediately started to research what i could do to help myself. For myself i have found that there is not really any particular food that causes a flare up for me, but there are PLENTY that will aggravate a flare up already in motion. Dairy, Spicy foods, Bananas, and really fibrous foods( ie salad, many types of vegetables).

My doctor has me on asacol only, and it generally works well for me. I typically only get flares when my bowels are stressed in an unrealted way. Like if i get food poisoning or a stomach virus that lasts a few days. Right now i am pretty flared up and not feeling good because i caught a stomach virus that my girlfriend also had. Initially i had dhiarrea for a few days with some sharp abdominal pains, and then it cleared up. I use Asacol enemas when im not doing well, and i bounced back pretty well, no blood, and solid stools. Then a few days later i was back to square one with blood, loose bowels, and Abdominal pains. My general physician did some blood work( it was time anyway, and when i mentioned my stomach condition she took a look at my white cell count to see if i was infected.) While a high white cell count is common during a regular flare up, i think that since i went from remission to back to full blown flare i got infected while fighting of the virus. Now im taking cypro, and hoping my enemas take effect once my supposed infection is cleared up.

As far as MJ goes i have had mixed results with my disease.

I love MJ and would smoke it whether it helped or not. However for me it had its benefits and a drawback or two. It relaxes me and it helps to settle my stomach there is no doubt of that. It also helps me eat even when i know that i will probably have to be going to the bathroom a few times afterward ( regardless of WHAT i eat). It also helps me feel normal again as i am not concerned 100 percent with my Flare up, and i am happy again like a usual and i can go on being happy and not worrying about the way my stomach feels.

For all this good there there is one draw back. When i am high and have smoked to relieved some of my symptoms, it usually does not do much to ease my pain. Sometimes, depending on what type of bud im smoking ( i think this happens more with sativas that indicas) MY pain when i have to use the bathroom is ten fold stronger, and it is spread out all the way down to my toes. i sit in the bathroom and rock back and forth because the pain is so exagerated and spread out. This is generally the only draw back i have with using MJ to relieve my UC symptoms. I reiterate that i feel like this only happens with the more trippy sativas, and generally indica does not do this.


The social aspects of CHRONS and UC suck too. I hate not going out with friends when im flared because i feel like i might not find a bathroom in time. Also one of the other things i REALLY hate is how nobody understands what you have going on. When i was first diagnosed i missed about a month of work to recover and get into remission. When i got back i had lost about 45 pounds. Now normally im an overweight person, so 45 pounds did not shrink me to skin and bones. But when i finally got back to work and saw everyone, there were some people who actually told me i looked GOOD because of the weight i shed, and told me to look at it as if at least ONE GOOD THING had come of it. A single co worker has a mom with lupus. She knows all about immune disorders, and was sympathetic to my pains. ON top of all that, everyone seems to think it was a temporary thing and if i need a day off to get my bowels under control, my co workers generally think i using what i have as a reason to get what i want. I am not a complainer, however they don't seem to take this into account when i am complaining that my colon is in bad condition. One of my bosses understands, and tells me how my other boss is always complaining to her that im simply taking advantage of it, and that i should be fired. The worst part is, i work ALL THE TIME feeling less than well, i go in when i have had only diarrhea for days and i am feeling very week and i am still working 40 hour work weeks all the time without complaints. i only take days when i am i terrible pain, and it hurts to even walk around a lot. However since i don't walk around work complaining about how i feel, and i am not the type of person to do so, i tend to be unbelieved by the majority of people who i work with.


Sorry for the lengthy post, i just found this thread, and could not read through 53 pages before typing a response lol.

[SouthrnSmoke]

Ramos, does lialda work for you? When i was in remission my Gastro switched me to lialda and i flared about a week later, i think the asacol being divided into more smaller portions works better, since if i pass a couple pills i still have one or two working for me. if i pass the lialda pill, i have nothing in me for the rest of the day.

[RAMOS]

Originally Posted by SouthrnSmoke

Ramos, does lialda work for you? When i was in remission my Gastro switched me to lialda and i flared about a week later, i think the asacol being divided into more smaller portions works better, since if i pass a couple pills i still have one or two working for me. if i pass the lialda pill, i have nothing in me for the rest of the day.

Yes it does. I've gone almost a year with no hospital visits, and very few flare ups. I started out taking 6 pills a day at 1.2GM a pill and winged down to 3 a day now, and 1 50mg Mercap a day.. Sucks that I have to take 4 pills a day but it works.

Another thing.. Lialda is so new, that many drawbacks haven't been found yet. Plus not having a generic sucks so if you don't have insurance you're screwed, but you can ask your GI doctor about a Lialda card if you don't already have one..

[SouthrnSmoke]

From the information i have found, Lialda is the same medication as the Asacol that i take now. After i had been in remission for a decent period of time, my Gastro decided to put me on 1 lialda a day instead of 3 Asacol three times a day. I just happened to flare up around that time and had to switch back to asacol. I noticed i was passing the lialda completely when i had frequent bowel movement, much more than i passed my Asacol, and i attributed it to being one large pill as opposed to 9 smaller pills. My guess is that the multiple smaller pills stood a better chance of being absorbed even if i passed a few, as opposed to the single large lialda pill. Luckily i have insurance and my medication is not terribly expensive, although he did give me a lialda card i wound up not using it since i had to switch back to the asacol anyway. Im not sure i have heard of mercap, ill have to check out what that is.


One thing to note, i did very well on a Canadian generic of asacol before i got insurance through my work. It was like 500 dollars, but that covered three months of taking three pills three times daily. if i had bought my medication in the united states it would have been the asacol brand name and it would have cost me 330 per month, three months and that's 990. If some of you don't have insurance and your paying full price for your asacol, consider Canadian equivalents.

Btw, glad to hear your doing well on your meds Ramos. I hate hearing about people on a large cocktail of meds that are getting no relief, i feel for those people. Not only is their chrons and uc in full bloom, but they are also dealing with the side effects of their steroids and other meds.

[ModderXtr]

Dunno why, but I've been shitting the same color as the forums lately.

At first I thought it was cause of the firecrackers Id ate, but it still happens. Googled it, and it would seem the most probable cause is iron deficiency, but I take iron supplements every day..

[RAMOS]

Originally Posted by SouthrnSmoke

From the information i have found, Lialda is the same medication as the Asacol that i take now. After i had been in remission for a decent period of time, my Gastro decided to put me on 1 lialda a day instead of 3 Asacol three times a day. I just happened to flare up around that time and had to switch back to asacol. I noticed i was passing the lialda completely when i had frequent bowel movement, much more than i passed my Asacol, and i attributed it to being one large pill as opposed to 9 smaller pills. My guess is that the multiple smaller pills stood a better chance of being absorbed even if i passed a few, as opposed to the single large lialda pill. Luckily i have insurance and my medication is not terribly expensive, although he did give me a lialda card i wound up not using it since i had to switch back to the asacol anyway. Im not sure i have heard of mercap, ill have to check out what that is.


One thing to note, i did very well on a Canadian generic of asacol before i got insurance through my work. It was like 500 dollars, but that covered three months of taking three pills three times daily. if i had bought my medication in the united states it would have been the asacol brand name and it would have cost me 330 per month, three months and that's 990. If some of you don't have insurance and your paying full price for your asacol, consider Canadian equivalents.

Btw, glad to hear your doing well on your meds Ramos. I hate hearing about people on a large cocktail of meds that are getting no relief, i feel for those people. Not only is their chrons and uc in full bloom, but they are also dealing with the side effects of their steroids and other meds.

Sweet, didn't know all that. I heard Lialda was expensive without insurance.. Sorry for the confusion.

But on another note, since I've been on Lialda and Mercap I've also been smoking CONSTANTLY. Like, habitually. So Idk if its all the shit or whatnot, but my reefer helps. ha.