Crohn's Patients

[trixx]

im heading down to some lake in Alabama for the weekend. Its supposed to be real undevolped and natural. Im taking my meds with me

[floating_by]

Originally Posted by trixx

im heading down to some lake in Alabama for the weekend. Its supposed to be real undevolped and natural. Im taking my meds with me

That sounds so good. I need to "get away" for a while. Hopefully its really chill and you can get in some good "R & R."

[floating_by]

Well, went to the naturopath today. A lot of information to take in. Basically, he wants me to try the SCD diet, along with some supplements to help aid in restoring digestive health. I'm pretty overwhelmed right now. The diet is very restrictive (although he claims that I will absorb more nutrients than I am presently.) I'm also going to the accupuncturist at their clinic next week. The naturopath said I should experience a LOT of pain relief from that immediately. My family is driving me nuts right now with questions for which I have no answer. I've started reading the book, "Breaking the Vicious Cycle" which outlines the digestive process (or more aptly, -indigestion,) and also the diet.

So far, from my meeting today, and what I've read from the book, our compromised systems are unable to digest complex carbohydrates due to a lack of digestive enzymes. The undigested carbs float around in our systems and nourish unwanted bacterial and yeast. These "bad guys" then leave their waste products in us and cause the overwhelming immune response we experience. This made sense to me given that Crohn's has links to certain bacteria, and some people experience temporary relief from antibiotis due to the fact they "wipe out" all intestinal flora.

I'm not exactly looking forward to a more restrictive diet. However, I am more willing to try this than Remicade and the other drugs that shut down the immune system. I feel the immune system is there for a reason. The drugs do nothing to change the cause of the immune reaction.

Sorry, long post. Hope everyone is having a great Friday.

[thebigd^]

So Thursday I go in for my first remicaid treatment. Im fairly anxious and scared but, we'll see how it goes. I have to go to a Cancer center, about an hour and a half away from my house. I have no clue how long im going to be there, or what its going to do to me, or what the procedure is. Any info on that would be nice!

Today, here in a hour or so, I'm going to have the chance to smoke real medical grade bud for free. Im pretty stoked, I may have been smoking for years, but nothing like that.
Ive had it rough today BM wise, so Im quite interested in seeing how it effects me when im doing bad.

But forreal, if anyone can tell me more about remicaid id LOVE to know and i'd +rep.



bigd^
-out!

[floating_by]

Originally Posted by thebigd^

So Thursday I go in for my first remicaid treatment. Im fairly anxious and scared but, we'll see how it goes. I have to go to a Cancer center, about an hour and a half away from my house. I have no clue how long im going to be there, or what its going to do to me, or what the procedure is. Any info on that would be nice!

Today, here in a hour or so, I'm going to have the chance to smoke real medical grade bud for free. Im pretty stoked, I may have been smoking for years, but nothing like that.
Ive had it rough today BM wise, so Im quite interested in seeing how it effects me when im doing bad.

But forreal, if anyone can tell me more about remicaid id LOVE to know and i'd +rep.



bigd^
-out!

I've only read peoples' accounts of Remicade infusions. I think they take 3-4 hours. They take your vital signs every 15 minutes (I guess it can cause your blood pressure to go low.) Often times, they might pre-treat someone with some sort of drugs if there is an allergy concern. If you have allergies of any kind, you might want to inquire about that before you go. Provided everything goes OK, people say just buckle down for a bit of a wait and bring things with you to do, (mags, music, laptop, book, etc.) I think it depends on the center you have it done at, but I guess you can be in a room with a number of people getting their infusions simultaneously, and the nurse kinda "makes the rounds" and checks everyone's vitals as they go around the room. Best of luck Big_D. I sure hope it works for you. I'm too chicken to try it. Smokin' the good stuff for free. Gotta like that! Enjoy man, you deserve it. Let us know how you are doing.

Had a couple good days here overall. Been taking probiotics, Vitamin D3 for my immune system, and some plant-based digestive enzymes to help break down my food. Been doing this for two days now. Today, one BM in the morning with minimal bleeding. Ate a huge breakfast of 2 scrambled organic eggs, gluten-free toast with organic apricot spread. Glass of OJ (4 oz.) A bowl of gluten-free rice crispies with milk, and a cup of my favorite orange & spice tea for a pick me up. I walked the dog, ate lunch, went shopping for some households and clothing (and stopped at the head shop for a new spoon.)
Filled the car with gas and got it washed. Holy fuck I haven't done that much in MONTHS! I am so excited. I think I am getting nutrients from my food for the first time in a long time. I am actually hungry and have an appetite. Still get some stomach upset after I eat, but damn, so much better. Going for accupuncture next week and I can't wait! (I am scared of needles. Diabetic afraid of needles, go figure.)

Head shop today was funny as hell. It's on the U of M campus and classes start this week. The place was absolutely PACKED! I was there about 30 minutes and I saw 5 vapes sold in that short time. Bongs, bubblers, pipes. I think MJ could be an official major.

[dle_240]

Originally Posted by floating_by

Well, went to the naturopath today. A lot of information to take in. Basically, he wants me to try the SCD diet, along with some supplements to help aid in restoring digestive health. I'm pretty overwhelmed right now. The diet is very restrictive (although he claims that I will absorb more nutrients than I am presently.) I'm also going to the accupuncturist at their clinic next week. The naturopath said I should experience a LOT of pain relief from that immediately. My family is driving me nuts right now with questions for which I have no answer. I've started reading the book, "Breaking the Vicious Cycle" which outlines the digestive process (or more aptly, -indigestion,) and also the diet.

So far, from my meeting today, and what I've read from the book, our compromised systems are unable to digest complex carbohydrates due to a lack of digestive enzymes. The undigested carbs float around in our systems and nourish unwanted bacterial and yeast. These "bad guys" then leave their waste products in us and cause the overwhelming immune response we experience. This made sense to me given that Crohn's has links to certain bacteria, and some people experience temporary relief from antibiotis due to the fact they "wipe out" all intestinal flora.

I'm not exactly looking forward to a more restrictive diet. However, I am more willing to try this than Remicade and the other drugs that shut down the immune system. I feel the immune system is there for a reason. The drugs do nothing to change the cause of the immune reaction.

Sorry, long post. Hope everyone is having a great Friday.

You have to kind of get use to liking on a diet when you have these kinds of stomuch problems. I know I had to just eat rice for two months one time. Then I did this two month Colon and liver cleanse with a nutrition booster. I have to eat just veg's and fruits. I have learned that you can have those rick items maybe once a month and it really wont effect your system. Like I use to have ice cream eevry month, but then I just cut it out of my diet. I have been too sick to eat anything at all let alone ice cream.

[1blood1life]

I was on Remicade for about a year, and once they got the routine down, I was in and out within 3 hours. But, I never needed premedications like Tylenol or Benedryl, so that cuts down on the time too. As for the procedure, each time I went in, I got weighed because Remicade is a weight based drug, then they ordered the Remicade to be mixed. Then I sat around, got my IV put in, etc. waiting for the Remicade to come from the pharmacy. Once that got there, the nurses hooked it up and let the infusion machine do its work. Also, you get your blood pressure taken every half hour, so you have to wear a cuff the whole time. The infusion itself takes around an hour, then they hold you for about a half hour to make sure you don't have a reaction each time. So, between 3 and 4 hours is a good estimate after you get into a routine for it. The first one for sure will take longer though.

Enjoy the medical grade!

Originally Posted by thebigd^

So Thursday I go in for my first remicaid treatment. Im fairly anxious and scared but, we'll see how it goes. I have to go to a Cancer center, about an hour and a half away from my house. I have no clue how long im going to be there, or what its going to do to me, or what the procedure is. Any info on that would be nice!

Today, here in a hour or so, I'm going to have the chance to smoke real medical grade bud for free. Im pretty stoked, I may have been smoking for years, but nothing like that.
Ive had it rough today BM wise, so Im quite interested in seeing how it effects me when im doing bad.

But forreal, if anyone can tell me more about remicaid id LOVE to know and i'd +rep.



bigd^
-out!

[1blood1life]

Originally Posted by floating_by

Head shop today was funny as hell. It's on the U of M campus and classes start this week. The place was absolutely PACKED! I was there about 30 minutes and I saw 5 vapes sold in that short time. Bongs, bubblers, pipes. I think MJ could be an official major.

Hideaway by chance? Haha, seriously, the best headshop on campus...and the U's pretty lax about MJ in general. It seems like most people do it or have no issues with it either way. What did you pick up at the shop?

[floating_by]

Originally Posted by dle_240

You have to kind of get use to liking on a diet when you have these kinds of stomuch problems. I know I had to just eat rice for two months one time. Then I did this two month Colon and liver cleanse with a nutrition booster. I have to eat just veg's and fruits. I have learned that you can have those rick items maybe once a month and it really wont effect your system. Like I use to have ice cream eevry month, but then I just cut it out of my diet. I have been too sick to eat anything at all let alone ice cream.

Yeah, I've been on a diet since I was 4 years old for my diabetes. Then in my mid-20's they said I have Celiac disease, so I haven't eaten ANY gluten for about 8 years. I eat organic as much as possible and don't eat anything artificial. I am already extremely militant about my diet, so it was pretty heartbreaking to hear the naturopath say I need to do MORE. FUCK! Does he realize what I've been through in my life already? I know he means well, but to drop another HUGE life change on someone and say "go to it" is just too much to handle. He wants me to call him in 2 weeks to let him know how the new diet is going. Shit, maybe I'll have read the book by then bud. Uggh. I crave ice cream, but that is a no-no for me too. Sucks.

[floating_by]

Originally Posted by 1blood1life

Hideaway by chance? Haha, seriously, the best headshop on campus...and the U's pretty lax about MJ in general. It seems like most people do it or have no issues with it either way. What did you pick up at the shop?

You know it. Got me a nice spoon that is thick as hell. It's so heavy I'm afraid my pants are gonna fall around my ankles when its in my pocket! Was gonna get a bong, but not stealthy enough for me.
IMG_2023.JPG

[dle_240]

Originally Posted by floating_by

Yeah, I've been on a diet since I was 4 years old for my diabetes. Then in my mid-20's they said I have Celiac disease, so I haven't eaten ANY gluten for about 8 years. I eat organic as much as possible and don't eat anything artificial. I am already extremely militant about my diet, so it was pretty heartbreaking to hear the naturopath say I need to do MORE. FUCK! Does he realize what I've been through in my life already? I know he means well, but to drop another HUGE life change on someone and say "go to it" is just too much to handle. He wants me to call him in 2 weeks to let him know how the new diet is going. Shit, maybe I'll have read the book by then bud. Uggh. I crave ice cream, but that is a no-no for me too. Sucks.

I feel you. I don't crave ice cream anymore. After having to heal with the after effects. I don't want to go through that. Why dose he say you have to do more for your diet? Or is it just like a 1 month program? Everyone in my family keeps telling me I need to put all my energy into getting better. Like I haven't been doing that my hole life. People don't understand how this alters your life. Espeically when you are young. I just isolated myself in school because I was out so many days and always in the hospital doing test and whatnot, I didn't have time for a social life. But anyways, I'm ranting on. I'm in a bad mood because I haven't smoked in like 4 days and I haven't even been able to keep water down for 2 days. Just see if the diet makes a difference. I have leanred it's more imnportant to portion control and try to spread your meals out to 6 a day. But thats realy hard to do when you have school and/or work. Good luck with the new diet.

[ellz2thehead]

Whats up Chronies long time no speak. i ve been out of the hospital for about a week. Surgeon put in a broviac for additional nutrition. i have had this disease since i was 5 so it has affected growth and all that shit.
While i was in the hospital my liver numbers got out of whack, mu altase and alkaline phosphatase. I dont know what that means, but i got an MRI on Friday, and i have an appointment with my GI on tuesday we will see what the next step is. Remicade has failed many times, so has methotrexate, and im currently on 6-MP I have a fear of it being humira.

I have been fighting this for a long time and its hard to find motivation, shit i dont remember anything else.
well that was a nice rant.

And if any chronie has any tattoo design ideas to represent this daily fight that all of us put up with.

[floating_by]

Originally Posted by dle_240

I feel you. I don't crave ice cream anymore. After having to heal with the after effects. I don't want to go through that. Why dose he say you have to do more for your diet? Or is it just like a 1 month program? Everyone in my family keeps telling me I need to put all my energy into getting better. Like I haven't been doing that my hole life. People don't understand how this alters your life. Espeically when you are young. I just isolated myself in school because I was out so many days and always in the hospital doing test and whatnot, I didn't have time for a social life. But anyways, I'm ranting on. I'm in a bad mood because I haven't smoked in like 4 days and I haven't even been able to keep water down for 2 days. Just see if the diet makes a difference. I have leanred it's more imnportant to portion control and try to spread your meals out to 6 a day. But thats realy hard to do when you have school and/or work. Good luck with the new diet.

the theory is that certain carbs are not digestible for people with a weakened digestive system, so the diet cuts out complex carbs and replaces them with simple carbs (monosaccarides.) It wasn't like he said I hadn't tried already with eating healthy and not eating gluten, but he said it just hasn't done the trick for me. I am in a ton of pain today, so I have some thinking to do about this diet and whether I am going to try it. Problem, is, I don't really have the strength and energy to start making all sorts of food from scratch. I can barely open a door knob today.

[floating_by]

Originally Posted by ellz2thehead

Whats up Chronies long time no speak. i ve been out of the hospital for about a week. Surgeon put in a broviac for additional nutrition. i have had this disease since i was 5 so it has affected growth and all that shit.
While i was in the hospital my liver numbers got out of whack, mu altase and alkaline phosphatase. I dont know what that means, but i got an MRI on Friday, and i have an appointment with my GI on tuesday we will see what the next step is. Remicade has failed many times, so has methotrexate, and im currently on 6-MP I have a fear of it being humira.

I have been fighting this for a long time and its hard to find motivation, shit i dont remember anything else.
well that was a nice rant.

And if any chronie has any tattoo design ideas to represent this daily fight that all of us put up with.

ellz,

Glad to hear you are outta the hospital. What is a broviac? Is that a tube for nutrients?
I've had this disease for only 2 years, so I can only imagine how frustrating it is to have it so long. I have days where I don't know how I'm gonna deal with this disease anymore too.

Tattoo? Hmmm... maybe a symbol for hope or something?

[trixx]

Wow. just read all the post that where posted while i was gone. The lake trip went PERFECT! It was a log cabin/house thingy that was fully furnished with wood furnishings and stuff. It was pretty neat. The whole outside of the house was a screened it pourched with these huge comfy seats. I smoked so much. Not only did i smoke so much but my host is studying to be a chef so i ate well all day long. We would smoke on the back porch then go fish off the dock. I think i gained 5+ pounds.

Sorry to hear about the hospital trip.

I dont know much about Remicade. Sorry.

Thats a sweet spoon man. How much was it. (you may have posted that but if you did i missed it.)

All is well here.