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Signed, Desperate for a new Doc.

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Ulcerative Colitis
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Posted 1/24/2012 9:12 PM (GMT 0)
What a beautiful day it is to be living in the south!

I met with my GI doc today and had four things on my mind: the SCD diet, Rowasa Retention Enemas, VSL #3DS and Blood work for Vit. D & B12 levels.

His response to the SCD diet was that he has never heard of it and just told me not to eat Pizza.
His response to the Rowasa Retention Enemas was that he has given them to others and a kid my age ended up with side effects like the 'shakes'. And apparently taking too much meslamines can cause alot of side effects. He disagreed with prescribing them even though I told him about needing some back up for coming off prednisone and help in the rectum area. He then prescribed me "Proctosol" steroidal cream which I already have.
His response to VSL #3DS was "What? a probiotic? No i dont know about that, i've done alot of studies on probiotics that can cause pancriatitis and people die. Just eat Activia yogurt once a week."

And he agreed on the blood work, sent me on my way and when I got to the lab down the road I confirmed with the woman the test was specifically for Vit. D and B12 levels... Nope. The test was only going to check my liver toxicity or something in relation... I walked out.

Done with this doctor, I don't blame him entirely because all they are taught in med. school is how to treat with medicine and absolutely nothing else, if there is no-proven cure for an illness. I'll be looking for a new doc who is a little more progressive.

The last thing he told me is that there is nothing to help treat me because this disease is purely genetics. I disagree, this was not a widespread phenom. years ago, that its becoming now and its obviously due more than just genetics. But he's the doctor. ;)

Post Edited (stereofidelic89) : 1/24/2012 2:16:37 PM (GMT-7)

Posted 1/24/2012 9:30 PM (GMT 0)
Can there be any question that you need a new physician? You live in the South. Go to the url below ASAP and find someone recommended there that suits you:

http://www.ccfa.org/physician/?TMI=3

Enter your new relationship with an open mind, setting aside all preconceived certainties concerning the more speculative dietary aspects of treatment. You need to be on a solid, conventional treatment plan. I would recommend your researching the suggested physicians to determine if they are connected with large teaching hospitals. In my view, you're better off with these institutions.

Good luck!
Posted 1/24/2012 9:53 PM (GMT 0)
Probiotics cause pancreatitis/death? I've never, ever heard that. Infact, the only link I found online is that they *may* not be good to take with acute pancreatitis: http://www.medicalnewstoday.com/articles/97757.php

It sounds like he was almost irritated by your questions because he's the doctor and you, as a patient, aren't supposed to question his methods. Which basically boils down to what you said about him going by the book and not having an open mind to suggestions or really listening to you.

I hope you find someone who isn't a jerk. Have you tried ratemds.com? That might help you in finding someone in your area who is good at their job.
Posted 1/24/2012 10:04 PM (GMT 0)
Well, stereo, what DRs learn in medical school is a lot of stuff - what they don't learn is how to relate well to everyone. You need a DR with an open mind, who will be able to discuss your needs with honesty and give you feedback you can use. Not every IBD patient wants this, trust me!

My GI is the 3rd one I've had in 11 years. Your experience is not unusual - I think in a chronic bowel disease situation the patient's needs are unique and not every GI is going to be a good fit. It takes a while to sort it all out.

The GI I have now is close to 70 years old. He's had coronary artery disease and has limited his practice as a result. Looking at him you'd call him an old fogie. But he's also the one who supported my choice to go gluten free. He's the one who gave me peppermint oil to sooth my crampy belly. He's the one who suggested sulfazine for my joint pain while my rheumatologist keeps pushing biologics.

My previous GI was a great guy who just didn't believe in treating anything, leaving me anemic and suffering from terrible joint pain. My first GI spent a year talking to me about IBS and then did a sigmoid scope and told me I had proctitis. Never mind that after weeks of treatment I still had bloody diarrhea. It takes a while sometimes to find a good DR.

Ask around for referrals. Ask a lot of people. Make a list of questions and go visit a DR as if you are interviewing them for hire. Because you are.
Posted 1/24/2012 10:23 PM (GMT 0)

stereofidelic89 said...

His response to VSL #3DS was "What? a probiotic? No i dont know about that, i've done alot of studies on probiotics that can cause pancriatitis and people die. Just eat Activia yogurt once a week."

What does he think is in Activia? Probiotics, obviously. That's truly sad. But I had a similar issue with my doc. He said that VSL isn't proven to be effective, because the company didn't release how many patients were treated and how many responded positively.
Posted 1/24/2012 10:36 PM (GMT 0)
wow stereo that's quite an ex-doctor you had. The only good thing is that you are on the ball enough to know he is not up to date (probiotics), wrong-headed (Rowasa), and malpracticing (not requesting the blood test you asked for). The SCD diet he gets a pass because there is maybe 1 out of 100 doctors who think diet can help UC. (Mine doesn't but humors me since I've improved so much).

How will you interview the future GI in advance to know how he/she feels about Rowasa and probiotics as well as blood tests? What city/state are you in? You might need to go to a university hospital (as someone suggested I think) and find a young GI fresh out of school and up on the current IBD protocol.
Posted 1/24/2012 10:51 PM (GMT 0)
Wow definetely time for a new doctor. Too bad he was so narrow minded.
Posted 1/24/2012 11:15 PM (GMT 0)
Not only narrow minded, he seems very misinformed. Shockingly so.
Posted 1/25/2012 12:38 AM (GMT 0)
Definitely time to shop around for a new gastro.

I agree with all posters, especially Serenity Now.

Posted 1/25/2012 1:02 AM (GMT 0)
That is one of the worst 'doctor' stories I have heard. I am proud of you. You haven't had this disease very long and already you have enough common sense to know a jerk when you see one.

When you think about it he is the perfect physician for the average patient who is looking for a magic pill to fix his/her symptoms. God forbid if we are forced to actually think and partner with our doctors. Eventually they will learn the hard way.
Posted 1/25/2012 3:33 AM (GMT 0)
Thanks all, I agree time to move on!

WingZero I'm gonna check out that link asap and CaptainCaCa I searched for doctors in my area South Carolina, Georgia and Vermont, but what I dont understand about the search is if these are all general physicians or should I be typing in 'gastroenterologist' ?
Posted 1/25/2012 3:35 AM (GMT 0)
Gastroenterologist. But really, the best way to find a DR that will work well with you is to talk to people. Do you have a medical doctor that you like, of any kind? Ask him or her to give you some names. Your naturopath might have some names. Your friends. Your friends' parents. That is the best way to sort through all of the options IMO.
Posted 1/25/2012 5:00 AM (GMT 0)
geez...and control freak with no empathy....he put you on pred, didn't he?
q
Posted 1/25/2012 1:32 PM (GMT 0)
stereofedelic89,

" ... but what I dont understand about the search is if these are all general physicians or should I be typing in 'gastroenterologist' ?"

You should type in your three states in #2, type gastroenterology into #3 and click Find Physicians. I came up with 16 entries.
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