Question for Jen O

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Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 6/23/2009 7:45 PM (GMT -6)   
     I read that you are taking Flaxseed oil 2,000 mgm.  Do you think they help you attain and retain remission?  I have a friend who swears by it.  She said she was diagnosed years ago with ulcerative colitis and that is when she started taking it.  She is off all  meds and in addition to her myriad of vitamins (takes too many in my view), she is adament about the flaxseed keeping her in remission.  She even talked her daughter in law, who was diagnosed last year with IBD into it and she too is in remission!!
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 6/23/2009 10:46 PM (GMT -6)   
Christine,

I am taking Flaxseed oil because my PCP recommended it. My cholesterol is high (240) and we are trying to get it lowered without yet another prescription! Supposedly omega 3 fatty acids are known to help lower cholesterol.

I started taking it around the time that I started the flare that I am in now, so I don't think it has really helped with my UC at all.

Sorry, but I wish I could be helpful with that! It was probably the prednisone that has helped me get my symptoms under control.

Jen O
Age 34, Diagnosed with UC September 2008
Current Meds:
Prednisone currently on 20 mgs, tapering down 5 mgs every Wednesday
Will start Azathioprine 100 mgs 6/22/2009
Just started taking Apriso 4 tabs daily 6/11/2009 (SIGN UP FOR THE LOYALTY PROGRAM FROM SALIX!)
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 2000 mg per day
Multivitamin
Also tried: Remicade, Asacol, Rowasa, Cantasa


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 6/24/2009 2:40 AM (GMT -6)   
     Okay, I thought it was too good to be true anyhow.  I asked my GI doctor about it years ago and he believed it would help if constipation were my issue, but it sure as heck isn't.  My condition is the opposite.  Don't need to be going more than I am now.  I had a lousy day yesterday.  Now I am beginning to see blood in with tons of mucus.  I am  on 20 mgm of the prednisone but that isn't helping anymore.  My doctor told me to increase the 6mp to 100 mgm!  I am scared to death to do that.  When I was at 75 last year my white count went down to 2.4.  Of course he is going to monitor my bloods like a hawk, but with this Swine Flu still swirrling around, it frightens me.
     How did you do on Remicade?  The doc has been pushing that on me for a few years too, but yesterday, he must have had a change of heart because he actually told me of two cases in Philadelphia where young men patients expired while on Remicade AND 6MP.  He said he would take me off the 6MP first...well geez, thanks....but how long does that stuff stay in the system.  From many of the posts I read here, Remicade isn't all it's cracked up to be either.  It eventually stops working and you are back in square one.  UGH..what a disease!
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


Jen O
Regular Member


Date Joined May 2009
Total Posts : 136
   Posted 6/24/2009 6:48 AM (GMT -6)   
Christine,

I had to stop the Remicade about 2 months ago. I only really ended up doing it for 6 months. It was so good in the beginning that I was hopeful that it was my "Miracle Drug"

My old GI doc said "Remicade save your colon." I was hospitalized for most of September last year as I would not stop bleeding and I had bloody D 20+ times per day. They gave it to me as a "last resort" to avoid a colectomy.

Looking back on things, I really didn't have the specialized care that I should have had. The gastroenterologists that were working with me were just generic GI docs and they don't really see a lot of IBD patients. I really didn't need to be in the hospital that long (my flare that was controlled these past couple of months with Prednisone was almost as bad and my new IBD specialist kept me OUT of the hospital) I am now on drugs that I should have been started on back then.

But anyway, back to the reason that I had to stop the Remicade. I started this awful flare one week before a scheduled infusion. The infusion did not help. The new doc drew blood for one of the famous Promethus tests. I didn't make antibodies and I had plenty of the drug circulating in my system. Thus I had been getting a large enough dose but my UC didn't respond to it. The doc says who knows if it ever actually did respond in the first place. It may have been all of the steroids finally kicking in.

It sounds like you are getting into a flare. Are you on 20 mgs of prednisone as a maintainance drug? I would just not go for that. I am only 34 and have only been on it a couple of times and my bone density is awful. I'm down to 15 mgs as of today, tapering down 5 every week now. I can't imagine what a "granny"'s bones look like if you are on it all the time! I am now on Imuran / AZA as of yesterday, so I will keep my fingers crossed that this will work now!

I agree, "UGH...what a disease!" and I haven't even had it for a year. I admire you guys that have had it 10+ and more years as sometimes I feel like throwing in the towel (when the pharmacist now knows me by name, especially) and say "take the darned thing out!

Jen
Age 34, Diagnosed with UC September 2008
Current Meds:
Prednisone currently on 20 mgs, tapering down 5 mgs every Wednesday
Will start Azathioprine 100 mgs 6/22/2009
Just started taking Apriso 4 tabs daily 6/11/2009 (SIGN UP FOR THE LOYALTY PROGRAM FROM SALIX!)
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 2000 mg per day
Multivitamin
Also tried: Remicade, Asacol, Rowasa, Cantasa

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