would love to know what everyone thinks

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anglfrmhvn69
Regular Member


Date Joined Dec 2006
Total Posts : 337
   Posted 11/19/2008 9:03 AM (GMT -6)   
i was curious as to what alot of you guys would suggest me to talk with the new gi that i see on fri. as to what med. to try? i tried asacol when i was first diagnosed it didnt agree with me. which med. has helped alot of you with longer remissions? i'm kinda not wanting to ever try the remicade cause of the side effect of certain cancers. i just lost my grandma to lymphoma and i know that is one cancer associated with that drug so that reason makes me more scared to ever try that.any suggestions is appreciated thanks all.

pamela

 i was diagnosed with uc on april.16,2003. had my sec. colonoscopy on aug.22,2007 came back normal.

currently flaring on prednisone 60mg x1 week,40mg x1 week, 20mg x1 week.

i also take nexium 40mg once a day for acid reflux.

take one multivitamin a day

                                                                       

 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 11/19/2008 9:15 AM (GMT -6)   
Ask about probiotics (unless your doc is unenlightened), maybe adding a rectal med to help you get off the pred, and look into a biologic med instead of a 5-ASA. If you haven't done so, start making a list of all your symptoms, no matter how minor, and any questions you have. Possible question could be about probiotics (as mentioned), other supplements, recommended dietary stuff, alternatives to meds, any clinical trials you might qualify for. I saw a new GI and I had a full sheet of paper with me...the apppointment didn't end until the doctor made sure we had covered everything I had on my paper. Not all GIs are that attentive, but if your doc is worth their money, they'll take the time to answer what you want you to know.
 
Good luck again, and I hope the appt goes well.  Keep us updated after the appt.
 


Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Meds & supplements: Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort, Prednisone ( down to 7.5mg), flaxseed oil, L-glutamine, magnesium, and vit B-12.
 
Trying the spinach/sunflower diet.  If needed, my next experiment will be to try LDN.


anglfrmhvn69
Regular Member


Date Joined Dec 2006
Total Posts : 337
   Posted 11/19/2008 9:19 AM (GMT -6)   
thanks i surely will do that and i was looking into trying the align probiotic,i was taking that new colon health probiotic but that wasnt doing anything,i guess cause it is for healthy colon's not diseased ones.i have acetate 25mg rectal suppository but it was helping.i just wish i could get off this pred. it makes me have insomnia and night sweats.

pamela

 i was diagnosed with uc on april.16,2003. had my sec. colonoscopy on aug.22,2007 came back normal.

currently flaring on prednisone 60mg x1 week,40mg x1 week, 20mg x1 week.

i also take nexium 40mg once a day for acid reflux.

take one multivitamin a day

                                                                       

 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 11/19/2008 9:30 AM (GMT -6)   
Another question: find out if your doc has any free samples of pro-bs or meds that can be doled out. Also ask about something to help you sleep. If your doc has no idea, try taking Benadryl at night. My problem isn't falling asleep, but waking up after a couple of hours, plus the sweats. Luckily, I'm single right now, so I'm not worried about soaking a partner, but it is a real pain I know.

If the pred is so bad, start tapering now...go down by 2.5 to 5mg a week. If symptoms get worse, you can always go back up. I was using a hydrocortisone enema to help me reduce my pred dose. I went from 40mg and now I'm down to 7.5mg. Now I'm going real slow because I don't want to induce flare again.
Brandon
 
36 y.o. male
Diagnosed w/ moderate UC in May '06
Meds & supplements: Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, Allegra, Lialda, Colocort, Prednisone ( down to 7.5mg), flaxseed oil, L-glutamine, magnesium, and vit B-12.
 
Trying the spinach/sunflower diet.  If needed, my next experiment will be to try LDN.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 11/19/2008 10:00 AM (GMT -6)   
     Where is your UC located?  Throughout the colon or just in the rectal area?  My UC is in the rectum and the doctor switched me from Asacol to Colazal about five years ago.  Not sure if you would be able to tolerate the Colazal since you cannot take Asacol.  I really don't think the Colazal or the 6 MP kept me in remission though.  Seems like I get a flare every year anyway.  At least for the last three years I have.   Only thing that gets me into remission is the dreaded prednisone.  This last flare lasted seven freakin months.  Hope I never get it that bad again.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 11/19/2008 10:01 AM (GMT -6)   
     OOOOPs....forgot to add.  I think the rectal meds helped a lot this last flare too.  Cort enemas and Canasa.  Good luck!!!!
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 11/19/2008 10:02 AM (GMT -6)   
What about the older ASA drug, azulfadine (Sulfasalazine)? I've had good luck with it and I also didn't do well on asacol.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


anglfrmhvn69
Regular Member


Date Joined Dec 2006
Total Posts : 337
   Posted 11/19/2008 2:33 PM (GMT -6)   
i'm not sure what part is diseased cause they never told me. the first colonoscopy the doc said i was to inflammed to go all the way up. the sec. one  my colon was normal no inflammation.i havent had to many flares just little ones cause i smoked before. then i quit and bam this flare was bad still trying to get to remission.but i did start smoking again so i have to wait and see if it will help again.

pamela

 i was diagnosed with uc on april.16,2003. had my sec. colonoscopy on aug.22,2007 came back normal.

currently flaring on prednisone 60mg x1 week,40mg x1 week, 20mg x1 week.

i also take nexium 40mg once a day for acid reflux.

take one multivitamin a day

                                                                       

 


crazytrain411
Regular Member


Date Joined Nov 2008
Total Posts : 109
   Posted 11/19/2008 4:17 PM (GMT -6)   
Probiotics, prebiotics and aloe vera. The possibility your intestinal flora was damaged and how to rebalance it. How to kill off bad bacteria, parasites, fungi naturally.

If he says he knows nothing about those things he is not reading journals for the past 8 years. He can always be just a tool for colonoscopies.

anglfrmhvn69
Regular Member


Date Joined Dec 2006
Total Posts : 337
   Posted 11/20/2008 8:22 AM (GMT -6)   
thanks for all replies

pamela

 i was diagnosed with uc on april.16,2003. had my sec. colonoscopy on aug.22,2007 came back normal.

currently flaring on prednisone 60mg x1 week,40mg x1 week, 20mg x1 week.

i also take nexium 40mg once a day for acid reflux.

take one multivitamin a day

                                                                       

 

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