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06-10-2009, 01:33 PM   #1
SpoonNinja
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Remicade reviews

so ive gotten stuff in the mail about remicade and ive seen you guys on here takl about it a lot. ive also done some research on the web about it. i think it sounds great because you dont have to take all the pills i do now and you only get ot every6 or so weeks. my prob is, i dont think im bad enugh for it. i would talk to my dr but he doesnt like ne thing other then pred and pentasa.im accually trying to find a new gi. i went to that website that tells you what ur symptomms are and it said mine were moderate. i have 2-3 maybe more flairs a year and even when im on pred it only helps so much. im sick of taking 9 pills a day and want to get back to my normal life. so do you guys think i should try it or not. regardless if i should or not i have to get a new gi or ill never get anything i need. its frustrating. thanx for the input tho. ^-^
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06-10-2009, 06:53 PM   #2
D Bergy
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I think you should find a new G.I and see what he has to say about it.

There are so many options, it is hard to decide without some kind of rationale for using one or the other.

Good Luck

Dan
06-10-2009, 09:16 PM   #3
My Butt Hurts
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It almost sounds like your main reason for wanting to try Remi is just so you don't have to take 9 pills a day. I wouldn't recommend it for that reason alone. I would also say to discuss it with your GI. I went on Remi because my other meds failed. I wouldn't wait until your meds completely fail, but if you think you need something else, then.. it's hard to say.
How is your quality of life? What's your worst symptom? How many times are you "going" each day? Do you have pain? These questions and anything else you could add might help us with a suggestion.
Good luck on your decision.
06-10-2009, 09:32 PM   #4
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You only take 9 pills a day?!
I'm insanely jealous...
Enough of that, I'm just playing with you.
Do you have Crohn's or UC? I'm asking because I have UC and my GI/PCP is putting me on either Humira or Remi later this month.
I think you definitely need a new (and better) GI!! At least that way, you and he/she can discuss a treatment and maintenance plan that will work for you.
Some doctors just refuse to think outside the box.
06-11-2009, 05:32 AM   #5
kello82
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i agree with the others that it sounds like you need a new gi. one who only will use two meds is pretty limited.
i think that what MBH said is very valid. you need to evaluate your quality of life and your symptoms and that should help you with your decision along with a doc who will listen.
good luck
06-11-2009, 08:10 AM   #6
SpoonNinja
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ok well i really dont do much right now...just out of school trying to get my cd under control. i doont really do much with my friends tho they are more into the party, drugs, alcohol, sex thing right now and i dont do any of that so i just dont see them often. i mainly read watch tv and do a lot of research on things, my mom thinks its weired lol. uhm and my worst symptom is probally going to the bathroom. i go 5-8 times a day on a good day. and sometimes theres blood or mucus in it and i told my gi and he did the test for blood and said it was normal. so idk about that. and i have pain well more like i can just feel its there untill i eat then it gets sharper but its still only maybe a 5 or 6. but i also have a high pain tollerance.
06-11-2009, 08:16 AM   #7
SpoonNinja
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oops didnt mean to post that yet lol. anyway i made an appt with my gi the 27th and will try and talk to him but i dont usually see him. his nurse comes in to talk to me and if she doesnt think i need to see him which is never then i dont get to see him. i went on that ccfa site and am getting my uncle to sign me up for it (he is the only one i know with a credit card) and also found a thing where they send you info about gis in your area so hopefully in a few weeks i will have that and can get a new one.

also im not sure if i should just jump to the remi but its the only other drug ive gotten ne info on. ive done some research but i just dont know. so any other meds that treat crohns that you think i should try before jumping to the iv stuff lemme know and i will check them out. it would be nice to only have to have injections for a few hours every few weeks instead of all the pills (which im accually on 13 right now) but if its for more then what ive got then i dont think i should do it eaither i just dont know ne other drugs and my dr wont tell me because he "doesnt think we should complicate matters with more medications then are nessasary" yea thats what he told me. so any help i would be thankful for! so thanx lol
06-11-2009, 08:55 AM   #8
katiesue1506
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Remicade is great if it works, but not having an immune system sucks too. I wish I could be on Remi and have an immune system all at the same time.
06-11-2009, 07:16 PM   #9
D Bergy
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In the jealousy department, I only take one pill a day for Crohn's medication. LDN is nice that way. But the best treatment, is the one that works the best for you.

I take six supplements that are not really a Crohn's treatment, but they are helpful to someone who has Crohn's. I took most of them before I was diagnosed, but they happen to have antibacterial and anti inflammatory properties.

Dan
06-12-2009, 09:27 PM   #10
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You only take 9 pills a day?!
I'm insanely jealous...



^^^^^^^^^^^^^^^^^^^
I hope no one took offense to that, especially you, Spoon! I really was just playing. I'm actually only on 4 pills a day for the UC. The rest are for other stuff.

So if anyone took offense, just kidding and sorry!
06-13-2009, 07:58 AM   #11
SpoonNinja
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na its no prob i thought it was funny^-^
06-13-2009, 10:47 AM   #12
fenway1971
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SpoonNinja said:
oops didnt mean to post that yet lol. anyway i made an appt with my gi the 27th and will try and talk to him but i dont usually see him. his nurse comes in to talk to me and if she doesnt think i need to see him which is never then i dont get to see him.
Spoon - my 2 cents is you need to get a second opinion. Find a GI who specializes in IBD. Whoever you find, don't be afraid to ask questions like you're asking here.

I understand your frustration with meds. Last Sept, at my sickest, I was taking 27 pills a day including vitamins, etc. I'm down to 7 but most are natural supplements. You have to accept the fact that you will need to take meds daily...but I do think you're smart seeking another opinion. This is your life not theirs.
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06-13-2009, 06:26 PM   #13
SpoonNinja
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arg im frustrated now! i dont know if its something i ate which i dont think it is cuz i checked my food diary, but my tummys hurting again. i think its because ive started to taper my preds from when i was in the hospital. i was on 40mg last week and this week i went to 30mg and its been a few days since ive done that and my tummys starting to get that cramping feeling. i would call my gi but he will just say wait till the appt the 27th soo yeah....im not sure what to do. should i go back up on my pred even tho i cant talk to any drs or keep going off them and hope this will pass? or maybe should i try and call my primary dr? idk if it keeps going i think i will try to talk to my primary. what do you guys think?
06-13-2009, 06:52 PM   #14
coronetrt101
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Taking all the medicines only masks the problem by reducing the symptoms but doesnt actually cure anything.

Of course you need to take them to stay alive but there are several alternatives that might help reduce the amount of drugs you need to use (unless you like pills).

Other than the Martial Arts Breathing I also just found that these other things helped and continue to help me with the pain and symptoms.

1) Reiki

2) Deep tissue body massages.

3) Cannabis
06-13-2009, 08:34 PM   #15
SpoonNinja
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hmmm i kknow what the first 2 r but what is the cannabis? ive never heard of it b4
06-13-2009, 08:43 PM   #16
carisa
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I agree with an earlier post to find a dr you are happy with. I was diagnosed in 1998 and didn't find a doctor who seemed like they cared until 5 years ago. I wish i would have sooner. Now when i start feeling bad they get me in within days and i don't have to feel guilty about it. I feel bad for you, I started on a new arthritis med and sent me back into a flare after the first full remission i had ever had. I have appt monday after er trip from the pain being at 9 out of 10. Down to 7, but i don't take pain meds, can't take advil and my allergy list is so long i can't keep track of it myself anymore. More than anything, i wish there was an easy answer. I know i always feel bummed when i start getting sick again. Okay, more than bummed, i had a nurse and dr near tears my last er trip. it is so frustrating, but your dr should be helping you reach where you want to be. One doc told me that you should only be on pred for minimum time, something else should hold you in remission. YOU need to find happy; remember you are paying the doc
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