NOT IMPRESSED WITH THE "BEST"

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mommafreds
Regular Member


Date Joined Sep 2007
Total Posts : 41
   Posted 9/25/2008 9:36 PM (GMT -6)   
So I went and saw one of the "best GI doctors in st louis"(head of research blah blah blah)
I waited for almost two hours to see him and he spent top 10 minutes with me but I think it was more like 5.
He told me to up my imuran to 150mg. To go off of prednisone and the asacal probably isnt helping. He said I have an autoimmune disease and all i needed was an immunosuppressant. No diet, supplements, (fish oil, probiotics, ginger, aloe, fiber, NOTHING else but the immunosuppressant was going to help me......I think these research doctors need to research more than just drugs. Do the ever do research on alternate therapies.? I dont care what he says..my diet effects me and I feel like probiotics help. I am dying to see how much this bill is going to cost. His nurse spent about 15 minutes with me but I am sure I didnt pay nurses rate. I was really excited about seeing this guy and left feeling pretty defeated. Thanks for listening.
DIAGNOSED 2004 PANCOLITIS
CURRENT MEDS: PREDNISONE 5 MG (DOWN FROM 40MG)DAILY
AZATHIOPRINE 100MG DAILY
ASACOL 400MG 4TABS THREE TIMES/DAY
PROBIOTICS: FLORA-Q AND ALIGN
ANTIDEPRESSANT: BUDIPRION 150MG DAILY
SUPER B COMPLEX WITH C VITAMIN DAILY
OSCAL WITH D TWICE DAILY


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 9/25/2008 9:52 PM (GMT -6)   
I have a negative out look too when it comes to most GI's. Really you are just another number to them, they see alot of people everyday. Does it make it right ? no not in my opinion. When it comes to alternate or natural therapy u really have to take matters into your own hands and do your own research. Remember doctors hands are tied when it comes to probiotics and natural therapies because most if not all are not FDA controlled, thus a doctor cannot and will not tell you how/to take probiotics and such. They dont want to be legally at fualt and i cant blame them.

I think its a combination a few things, one is the new generation of UC suffers need to make unite and speak up on what is working for them, two more research with diet and probiotics should be preformed (actual clinical trials). As far as i know only one has been done with VSL#3 and they had astounding results like 80% went into remission! And three most of all the FDA start backing this type of treatment up!

I think its only time and maybe soon before some break throughs are made and supported for UC. Probiotics is honestly kind of a grey area for people but it seems to be getting some respect it nowadays.
26y old male medically disharged USAF veteran.Diagnosed with UC (lower proctitis) in 2004.
 
Current daily treatment:                               Probiotics & supplements:
1000mg sup asacol                                      50 Billion CFU's acidopholis&Bifidobacterium daily
2400mg oral asacol                                      Digestive enzymes before each meal
25mg prednisone tapering                             5grams of glutamine
75mg azathioprine                                       folic acid & calcuim with V-D
20mg Nexum                                               Whey protien  
 
Diet:Little/no sugars, fats, carbs, caffine. Stay natural as possible.  
 
Results:1 Bowel movement in the morning no blood!


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 9/26/2008 7:47 AM (GMT -6)   

I guess I am lucky to have a doctor who "prescribed" probiotics and a lowfat/low sugar diet (until in remission)  He gave me a sample of Align probiotics which I am taking.  I tried primal defense which he said was also good but gave me too much gas so went back to Align.Possiblity the fast that he is origninally from India has something to do with it - who knows?

Also, his NP has talked to me quite a bit about lifestyle, eating, exercise, etc. and what could help. 

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis
canasa and proctofoam
colazal tried rowasa
Probiotic Align
Prilosec for GERD
Inderol for hypertension
Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
 
 
 
 
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 9/26/2008 8:01 AM (GMT -6)   
I've seen 7-8 GIs and have never had one talk to me about probiotics or natural supplements. And no, they don't do research on them because these things generally are natural, not patentable and no one (read: big pharmaceutical companies) stands to gain. They don't do dietary research for the same reasons and because it's extremely difficult to do controlled testing on patients with dietary manipulation. Also, most doctors aren't trained in any of these things in med school. They're trained in meds and surgical intervention.

There are a FEW exceptions to the rule out there, but you'll have to look long and hard to find them and most seem to be clustered on the east or west coasts. In the meantime, if these things interest you, the best thing you can do is be your own patient advocate and EDUCATE yourself by reading every IBD book and Web site on alternative therapies you can get your hands on.
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.
 
 


goforbroke
Regular Member


Date Joined Sep 2008
Total Posts : 51
   Posted 9/26/2008 12:05 PM (GMT -6)   
Most doctors won't talk to you about natural medication. I told my doctor what I was taking and he diverted from the conversation. I told him if the natural stuff doesn't work for me then I will try out the medication he wanted to put me on. I went 2.5 years almost 3 years without a flare up and I believe the only reason I got one was because I stopped my daily dosages along with eating pizza,ice cream, and french fries the one night in one meal. nono It was my cheat meal for the week and I over did it. The stupid things you do when your on vacation and feeling great.
 
Like already mentioned educated yourself as much as possible. Doctors are not going to talk to you about natural meds because it doesn't benefit them. Their have been studies proving fish oil and acidophilus help with regulating the disease. I think if you can figure out the dosage you need every day it would help out a lot of people.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4223
   Posted 9/26/2008 10:06 PM (GMT -6)   
Sorry to hear you had a disappointing experience. I was also not impressed with "the best" in my area of the country when I visited them last year.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa nightly; Canasa weekly; Viactiv; Metamucil wafers; multivitamin


UC Fighter
Regular Member


Date Joined Oct 2007
Total Posts : 89
   Posted 9/26/2008 10:28 PM (GMT -6)   
On one hand my GI suggested I take probiotics (Florastor) especially after taking an anti-biotic. On the other hand, I'm totally left on my own to manage it myself. Problem is I'm not a doctor and hell, I don't know what I'm doing. I think I do... then ... I think I do... Sigh
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 9/27/2008 11:38 AM (GMT -6)   
My current GI is with it...he encourages me to see a nutritionist if I wish and even a naturalist and he thinks that the bee propolis and all the other naturals I take are great especially since they've helped me so much...infact regarding the bee propolis, he said even if it didn't help my CD like it does that it's still an excellent dietary supplement for IBDers because we tend to lack getting all the nutrients we need via food alone.

He is also a lead researcher for crohn's and colitis in Canada.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 9/27/2008 12:38 PM (GMT -6)   
pb4...where do you purchase bee propolis?
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


goforbroke
Regular Member


Date Joined Sep 2008
Total Posts : 51
   Posted 9/27/2008 12:49 PM (GMT -6)   
I'm currently going through a flare up at the moment. It's really nerve racking that everything we all do doesn't work for each one of us. I'm just really trying to learn how my body reacts to certain natural meds. Can everyone tell when a flare up is starting to develp? At first I wasn't sure but now I know the little signs.
I also think our diets play a huge roll when were having a flare up. I'm not sure how everyone else eats but I eat a high protein diet and a good amount of complex carbs along with healthy fats. I really train and eat like a bodybuilder but I think that has really helped me out with this disease.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 9/27/2008 1:20 PM (GMT -6)   
Christine1946 said...
pb4...where do you purchase bee propolis?


I buy it online from puritans pride, I live in Canada and even with the shipping and such it's still way cheaper than buying it locally, not to mention it seems to be hard to find where I live...I've been using it daily for 5 yrs now, I take 2/day and noticed improvements within the next day after I started with it, it stopped my bleeding and pain instantly by the next day and quickly started cutting back daily BM's.

It's 100% non-toxic which is another reason why my GI said continue with it...but if you're allergic to bees then you should avoid ALL bee products.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 9/27/2008 1:23 PM (GMT -6)   
I have one of the best in London and he is amazing - he called me last night to "reassure me" and spent 45 minutes on the phone. I can email him anytime and I think that's important for IBD as it's a chronic issue that needs support.

Diagnosis Oct 07 and then Aug 08: Inditerminate Patches of Mild Colitis (including Rectum) - Currently Minor Bleeding
Medication: 1000mg Asacol Enema, 800mg Asacol Tablets x 2 a day.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 9/27/2008 1:24 PM (GMT -6)   
     Thank you pb.  My friend orders a lot of stuff from puritans pride.  She swears by flaxseed oil capsules and even gave me a jar, but I don't think it is helping my UC.  Do you order anything else from them?  I hear their prices are very reasonable.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/27/2008 5:32 PM (GMT -6)   
My GI also never suggested probiotics, and when I asked about them she was indifferent.
I only see her for what I need to have covered by insurance.
I have learned -- and healed -- since I started seeing a Naturopathic doctor, and highly recommend it!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering OFF prednisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, dairy-free (other sensitivities) etc. diet which resolved flare. Also Replete probiotic. Slow-release iron and B-12 shots for anemia.
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 9/27/2008 5:49 PM (GMT -6)   
Christine1946 said...
Thank you pb. My friend orders a lot of stuff from puritans pride. She swears by flaxseed oil capsules and even gave me a jar, but I don't think it is helping my UC. Do you order anything else from them? I hear their prices are very reasonable.


They have excellent prices and deals like buy one, get 2 free...I also purchase my omega 3-6-9, vitamin A and vitamin C-calcium ascorbate.

Infact I just re-ordered more bee propolis, vitamin A and C as a buy one get 2 free, they also had the option of buy 2 and get 4 free.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)

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