Why does my GI act like I know nothing?

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mumbles
Regular Member


Date Joined Dec 2008
Total Posts : 199
   Posted 5/14/2009 11:38 PM (GMT -6)   
I just went to the GI a couple days ago, and he started talking about how asacol was a base level drug, and that I should really check out ccfa.org after I said I already did. Then I started asking about 6MP and how I was scared of it permanently screwing with my DNA. He said it was just hypothetical. He also explained to me how the drugs work, which I already knew. I feel like no one anywhere can help me. How can I trust my GI when he always pushes drugs like there is nothing else?
Asacol-12 a day
1 Culturelle
1 Canasa
5g Fish oil supplements
1 Vitamin
1 B-12(for anemia)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30411
   Posted 5/15/2009 1:37 AM (GMT -6)   
Maybe it boils down to your expectations as well and that your doctor isn't clear on what they may be.

You could try the other 5ASA meds, both oral and rectal you could consider to try the enemas instead of just the suppositories.

Asacol is a base-line med....but not all docs use it as such...some use pred...to which I think screws up the future potential of some patients' progress or success with 5ASA meds.

Where exactly is your UC? what exactly are your symptoms that you're having at this point in time. I know I've asked you but I don't remember....

I'd be somewhat afraid to graduate to the immunosuppressants as well...but I have success with the meds I'm on...but things can change as they have for others and I dread the day that it may happen they don't work any longer.

q
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 5/15/2009 6:24 AM (GMT -6)   
If you're not satisfied with the advice you're getting from your GI doctor, then get a second opinion to make sure you're on the right track. I have taken second opinions often on my treatment options because many of the drugs we take are very strong, so it's important to be sure about what you're doing.

When I have questioned some of the treatments, sometimes my doctors too have gone back to telling me the basics, and I think they do that because they're used to reciting these facts all day long, so I don't mind it; but I make sure that I get my point across and get a suitable answer.
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine (stopped), 4800 mg Asacol
VSL#3 x 3 times a day, Metamucil wafers
Vitamin E enema or Asacol enema occasionally
Spinach & sunflower seed diet / Juicing spinach and carrots


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/15/2009 8:34 AM (GMT -6)   

I have been fighting the DD for over a year now.  My GI doc started slowly - having me use the mesalamine medications at low doseage and working up from there.  Found I cannot tolerate mesalamines so moved on to prednisone, rectal meds (all types) and now 6MP.  I did not ask for a second opinion but he has faxed my records to a very reputable specialist in Albany for review and consulation.  Doctor and I work closely with my NP who really understands me and what is going on in my head as well as body.  At almost 69 I am one of his oldest newly diagnosed patients and I believe that is a real challenge to him (and me).  Side effects have been the worst!  I know that Colozal was helping so much but when increased to a doseage that really worked I could not tolerate it.  So goes the world of medicine. 

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 5/15/2009 9:46 AM (GMT -6)   
Can I ask why you are so adverse to immunesupressants,such as imuran and 6mp,I can totally understand why you d'ont want to take them unless absloutley necessary but I d'ont think doctors push these drugs,they ussually only offer them when other meds have not worked to put you in remmission
as long term untreated inflamation can also be dangerous as well as increasing the risk of cancer.
I trust my GI's opinion,he has had many UC patients over 25yrs and he says he has not had any develop,cancers as a result of taking imuran,or 6mp he has had to take people off the drugs for varying different reasons he has some develop strange skin probs and warts that have disapeared when patients stop taking them,he has also had patients on imuran for 8 years plus.
I did not want to take imuran I doubt anyone does,but after trying all other options,including every diet
scd etc,imuran has slowly given me some relief,normality back again,without any side effects,unlike the other meds,and I'm now beginning to be glad I did'nt opt for surgery wheh offered it.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/15/2009 12:46 PM (GMT -6)   
In my experience, you can't expect most traditional allopathic gastro docs to offer alternative, natural therapies, to talk about dietary modifications or probiotics or anything beyond drugs and surgery because that's how most were trained. If you're looking for other options - it's not clear from your post - an alternative medicine doctor or a naturopath may be helpful. I can also recommend several excellent books, if you're interested.

On the other hand, if you're just not happy with your interactions with your current doctor, by all means find another one. There are tons of them out there and even the traditional ones do have very different approaches. I've seen some that prefer immunosuppresants over steroids and some that are vice versa. Some are responsive and take the time necessary to address all of your concerns; some don't.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/15/2009 12:54 PM (GMT -6)   

Check out my post about doctor I am referred to - apparently he has done lots of research, etc. on diet, etc. I am to see him next month.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
Now 75mg. and 15mg. prednisone for a week. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/15/2009 11:57 PM (GMT -6)   
Many docs push drugs on their patients cuz they have no other way of dealing with the disease (that they've learned) as princesa explained above, most of them are basically narrow minded cuz that's the way they've been taught...I'm just glad I have a GI that's open to anything and has even encouraged me to see a naturopath, dietician or anyone eles I think might be of use to me.

In my experiances, an open minded doc is a doc that actually cares about their patient and not the pharmaceutical companies....GI#4 owned a pharmacy in the same building his office is in which is one reason why I have GI#5 now.

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


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/16/2009 8:35 AM (GMT -6)   
It's a pretty frustrating disease to treat.

Maybe you would like talking to a naturopathic doctor. I like my GI and she respects my experience/knowledge, but the naturopathic doc was much more...thoughtful? I can't think of the right word, but he certainly wasn't going to depend just on drugs (although he also didn't expect me to stop taking my Rx).
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


mumbles
Regular Member


Date Joined Dec 2008
Total Posts : 199
   Posted 5/17/2009 8:26 PM (GMT -6)   
Yeah, I know they don't understand anything but their drugs and medical training, but they shouldn't act like I am stupid. He just kept saying all the long term side effects of 6-MP were just hypothetical. It still scares me though, cause I am so young. I am scared that one mutation now will lead to something horrible later.
Asacol-12 a day
1 Culturelle
1 Canasa
5g Fish oil supplements
1 Vitamin
1 B-12(for anemia)


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 5/18/2009 5:19 AM (GMT -6)   

Your doctor may be trying to ease your mind, but if he or she is telling you that the side effects are hypothetical, that doctor is misinformed or lying.  The FDA is clear that they are not hypothetical, and duration is considered a factor in carcinogenesis. 

Your concerns are well founded, and I understand the many reasons doctors brush off patient concerns, but I'd be looking for another doctor if I were that uncomfortable with mine.  They are practitioners of a skill set, nothing more.

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