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Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 1/15/2009 9:40 AM (GMT -6)   
Have any of you all told your GI about this website? Do you think they would even care or take the time to listen and gain more understanding about what we are all going through. I was just thinking and I don't even think my Gi would have the time or the interest....You would think this would be a gold mine for a real Dr b/c it's straight from the patients.
                                                                                         
28/M/TX single parent of gorgeous 3yo girl (revised 12/12/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  Mildly Flaring 
RX/day: none! Tapered off Prednisone 9/20/08. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
OTC: enzymes everyday, turmeric, seldom use probiotics, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
Other: Prayer, food combos, good posture, chewing more, etc.


spluxa
Regular Member


Date Joined Nov 2008
Total Posts : 183
   Posted 1/15/2009 12:29 PM (GMT -6)   
I wish they would do it, but I dout! We are just income for them, amd I don'y think they care so much...at least most of the doctors. It's very hard to find Doctor in the Heart. If someone knows somebody like that, let me know cos I have NO luck for the doctors...:-(
Diagnosed with left-sided UC on Sept 08 Colazal 5x2day, Lialda 2 per day (so unusual to take just 2 pills)
Canasa 1 supp. every nigh Cortifoam 1 at night
Vitamins: Zinc, B complex, Fleexsead Oil capsules, Multi. Digestive Enzymes (helps a lot)
***I'm not sick with UC, it's UC sick with me!***






Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5181
   Posted 1/15/2009 12:36 PM (GMT -6)   
My gastro, who subspecializes in IBD treatment reads it-- how often I can't say because this is a constantly busy practitioner, researcher, & well-known medical school faculty member. (Who also figured out that I post here!) / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 1/15/2009 12:40 PM (GMT -6)   
the thing of it is, wouldn't you rather have a qualified doctor who's competent in the medical aspect of the disease, than one who is more versed in the emotional aspect? I mean, I don't expect compassion or hand-holding from my GI- if I want that I'd probably look for a therapist who works with chronic illness. Empathy, yes, I do expect that... but even if my doctor has a horrible bedside manner, as long as I feel he knows what he's doing, I can deal. One of the surgeons I met with who is considered to be one of the best colo-rectal surgeons in the field- dry as a bone! Barely smiled the entire consult, offered little to no "support", no well-wishes, etc. But I was fully prepared to have him operate on me- my GI warned me in advance of his non-existent bedside manner. I use this board as my emotional sounding place, I don't think I'd feel as comfortable doing that if my doctor visited it! No way.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/15/2009 1:18 PM (GMT -6)   
I agree, Eva. It seems that a doctor's training is focused on how to diagnose a condition, what western medicines to prescribe for it, and how to perform surgery if necessary. I'm not surprised that they know little about alternative treatments. I'm also not surprised that they don't fully understand what it is like to have the condition if they don't have it themselves. However, I am finding it a surprise that doctors seem to know little about the possible side effects from the medicines they prescribe. Do they not receive training on this?

Thank goodness for the Internet. I would be so in the dark without it. I had a skin inflammation back in the early 90s in which I had to take antibiotics for. The antibiotics kept the inflammation from growing, but they did not "cure" the inflammation. It took me years to figure out on my own what was causing the inflammation. I finally figured out that it was something in the bread and cheese I was eating. I eliminated them from my diet, and the skin inflammation went away on its own. BTW, this happened some years ago. I can now eat bread and cheese again. They don't bother my colon.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/15/2009 2:14 PM (GMT -6)   
In my experience with multiple GIs, I'm betting most are too busy and don't feel they have anything to learn by visiting a forum like this and "listening" to patients. When I achieved long-term remission, I was amazed that my GI didn't show any curiosity or interest... didn't even want to discuss it. I'm sure he wasn't intending to be rude, but he made it pretty clear he thought I'd done nothing to affect my health. Rather it was simply a fluke and I could expect a miserable flare to come my way at any time and I should be sure to let him know so he could respond appropriately with more medication.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/15/2009 6:44 PM (GMT -6)   
True, the most cutting-edge GI at the university hospital had little bedside manner and could not deal with the emotional issues. Except that he let me pass on flex-sigs when I was having a bad day, even though they were needed for the drug study. But otherwise, he was all about the science.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/15/2009 8:39 PM (GMT -6)   
I actually told my GI about this site. He clains to be skeptical but open to diet and supplements. His theory is if not documented research has been done then its not worth it... BUT he also says there's a whole lot of good ideas that haven't been researched yet. So if it works.. then it works. He said he was going to check this site out for its ideas, maybe give him a new avenue to research. no wether he does or not??? who knows. If ya do and see this doc...... HI LOL
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 1/16/2009 4:44 PM (GMT -6)   
When I started this post I wasn't even thinking about he emotional side of this website like most of you all did. Maybe b/c I'm guy and my date just told me last night women are emotional and men are factual...
And I didn't even think about the alternative or natural treatments about this site b/c quite frankly i think they make up about 5% of all the posts on here.
I was thinking about general knowledge about drugs and how they affect us and what symptoms occur and when.
Once I told my GI that my main problem is in the mornings and I wanted him to "excuse" my tardiness at work during heavy flares and he said that is not a typical time for feeling bad.. WHAT!! I bet lots or most of us feel bad in the morning when flaring and sit on our thrones the most in the AM.
Also when I took antibiotics during my first remission after my first flare and told him he didn't even recomend probiotics. That was really detrimental to my contol and overall UC. I regret antibiotics big time if only I had been warned..........
I'm just saying a Dr would be smarter if he read some of this stuff. Of course you want them to be well versed in the schooling aspect of it but i'm just saying.. They get in a rut and prescribe the same thing over and over and over probably b/c they get free samples and discounts.. And I for one don't care one bit if he holds my hand or says hang in ther buddy. All I care about is the best service provided. I guess I probably expect o much out of people.
                                                                                         
28/M/TX single parent of gorgeous 3yo girl (revised 12/12/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  Mildly Flaring 
RX/day: none! Tapered off Prednisone 9/20/08. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
OTC: enzymes everyday, turmeric, seldom use probiotics, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
Other: Prayer, food combos, good posture, chewing more, etc.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/16/2009 9:34 PM (GMT -6)   
Maybe it's just me, but I have found that of all the medical specialties, gastroenterology seems to attract the most closed-minded, least progressive people. Probiotics have been pushed by alternative type docs and practitioners for decades if not longer, but only in the past 5 years or so have some conventional doctors started to accept them. I think part of the problem for the medical profession is that it is so enslaved now to litigation (those who taketh) and insurance companies (those that payeth) respectively, so that anything that is not established as "standard practice" for years is simply deemed too risky to tangle with- legally in terms of the risk of a lawsuit, and financially because insurance won't cover it unless it has been established as standard practice for years. So anything cutting edge is rejected, or at least not given its due, even though in another 10 or 20 years much of it will be standard practice. That's why we have to take things into our own hands and combine allopathic and so-called alternative docs to get the best treatment, plus do our own research and trial and error, according to our own risk comfort.


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
15ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/16/2009 10:20 PM (GMT -6)   
Let me start with my GI is great at what he does BUT when I told him 5 yrs ago that I go to support forums he seemed pretty disgusted with them, his "idea" is that most people that come to these support forums are whiners and if they were as sick as they say they are then the last thing they'd have energy for is surfing the net and posting on support boards....

I told him he was way off and the key word is "support" and that these are great places for IBDers especially to connect with one another when having a DD like this makes it so hard to leave the house for many...he appologized and said that he should have thought before he spoke, especially after I told him that the emotional therapy of helping others does wonders for us.

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


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 1/17/2009 6:58 AM (GMT -6)   
I've never mentioned this forum to my GI... I'd assume he knows I look into UC-related things on the internet though. I must be the luckiest one on here, I truly have no complaints about my GI. None. While he doesn't recommend alternative treatments necessarily, he doesn't dismiss them either. I wouldn't expct him to recommend them, as he's trained in conformist, Westernized medicine. I think he probably does write the same scrips over & over again, but this holds true for all doctors- working in the health-care field, I can tell you the majority of scrips written are for about 10 drugs. Including antibiotics! I honestly don't see how following forums such as this one would improve the care a doctor gives their patients. I mean really, we do the same old posts over & over again too- there's only so much to discuss, ya know???
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 1/17/2009 11:42 AM (GMT -6)   
     I told my GI doctor about this forum.  I don't think he was too happy about it because I decided against Remicade due to all the info I received on it plus the fact that I was exposed to the TB virus years ago and it could reactivate the virus and kill me.  I know there is something I could take to suppress the TB virus but then, what, another drug?  No way.  Plus his associate who cared for me while I was hospitalized said I was NOT a candidate for Remicade, so go figure.
     Another thing, my GI doesn't have much of a bedside manner either but we have good communication going on between us which means a lot.
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 1/18/2009 8:09 PM (GMT -6)   
Got2Believe said...
Once I told my GI that my main problem is in the mornings and I wanted him to "excuse" my tardiness at work during heavy flares and he said that is not a typical time for feeling bad.. WHAT!! I bet lots or most of us feel bad in the morning when flaring and sit on our thrones the most in the AM.
 
And I for one don't care one bit if he holds my hand or says hang in ther buddy. All I care about is the best service provided. I guess I probably expect o much out of people.

Yes, it's well known that mornings are often the worst time for UC sufferers. When a doctor makes a comment that shows he's totally out of touch with reality, I think it's time to look for another doctor. It's not too much to expect a specialist to understand and empathize with his patients and the diseases he treats.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/18/2009 9:39 PM (GMT -6)   
Mornings are typically worse for all IBDers (CD or UC)...most docs only know about text-book symptoms, goes to show many don't listen to what their patients are telling them either.

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


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5181
   Posted 1/19/2009 1:45 PM (GMT -6)   
I agree with Princesa & pb4's comments above. Every UCer flaring knows that mornings are pure hell! Any doctor who denies that or belittles a patient's complaints about it should not be treating IBD. Period. Another major problem with doctors of this ilk: they tell UCers to stop all meds cold turkey. See Gigi's current post "Is this normal?" for the latest example of bad physician advice that members report here fairly often. Shame on them for causing patients more problems/needless suffering! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/19/2009 3:02 PM (GMT -6)   
Got2Believe said...
Once I told my GI that my main problem is in the mornings and I wanted him to "excuse" my tardiness at work during heavy flares and he said that is not a typical time for feeling bad.. WHAT!! I bet lots or most of us feel bad in the morning when flaring and sit on our thrones the most in the AM.

That is crazy! It seems everyone on here has more of a problem in the morning... I know I do. When I wake up, it's straight to the bathroom multiple times before I can even start getting ready. I typically have at least 7bms before I even leave the house for work. Occaisionally I have to stop somewhere on the way to work too, it's a 15-20min drive but often the minute I pull away from my apartment, the urgency hits again. Really annoying. But at night, granted I do feel more wiped out, but I have less BMs and I usually do all my eating then because I can tolerate food better than I can in the morning.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/20/2009 2:15 AM (GMT -6)   
My vent about doctors:

One thing is for sure. I'm not going to take Colitis medicine just because a GI told me to. I don't think doctors know enough about alternative treatments for Colitis to make informed decisions. As a result, they tend to think that the side effects of Colitis medications are "necessary" trade offs. If they knew more about alternative treatments, then perhaps they wouldn't think so.

I saw three doctors for my urinary tract infection about 4 to 15 months ago. I told them all that I was worried about taking antibiotics, because I have Colitis. None of them told me about probiotics. Guess what, I got a flareup after being on the antibiotics three times.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners

Post Edited (subdued) : 1/20/2009 1:23:10 AM (GMT-7)


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 1/20/2009 9:43 AM (GMT -6)   

If it wasn't for this site, specifically and the internet in general I wouldn't know much about this disease because my GI has spent precious little time explaining it to me!  He never gave me so much as a leaflet on ibd when he first dx'ed me.  Perhaps he thought from merely being in his presense, I would absorb, through osmosis, all the info I needed on this disease.  I probably need a new GI....

My son regularly sees a pediatric GI and he always assumes I am looking up information online and does not discourage it at all.  So does the pediatric neurologist, except he requests that we visit nih.org or mayo.com before venturing out into public opinion domain.  Perhaps pediatric specialities are more open because they don't answer directly to a sick person, but to their guardians who can easily be a more fierce advocate for thier child than they might be for themselves


UC diagnosed 10/05, first symptoms 1983
asacol 12/daily and rowasa as needed 
Trying out Culturelle Probiotic
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do.  lifes been good to me so far.  -joe walsh

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