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Ever get frustrated with your doctor??

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Ulcerative Colitis
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Posted 7/25/2011 4:16 AM (GMT 0)
I think I might be aggravating my present GI physician to a certain extent due to the fact that I refuse his recommendation of Remicade. I've sought a second opinion on the subject from another group of specialists, and had that paperwork sent back to my present doctor as well.

Friday I was entirely frustrated with this disease and the medical community, and asked the scheduler to let me see the physician I started out with... who was too busy to see me during a flare about 5 years ago and thus I began seeing my present doctor who was available. I'm now regretting the decision Friday to see the older doctor because it looks like I'm just trading doctors off.

But... I sort of am trading doctors. Is it bad to feel let down by a doctor when he has no other options besides Remicade? I'd enjoy a physician that was willing to accept my apprehensions towards biologic medicines, and was willing to be empathetic and open to other options if they were proven to be less harmful than Remicade. I fully understand that Remicade DOES work for many people, but this is my body and if I'm unwilling to take the chance with it I think I still deserve to be treated as a patient in need, and to still have my doctor present some sort of options for me... instead of me having to scour the internet finding medical studies for other treatments. It's as if I'm seen as uneducated and literally stupid for avoiding Remicade, when in my mind I am simply not willing to take the risk until I have exhausted any options available that are less risky. If I've done all those things available, then yes, I'm willing to submit myself to the risks involved in biologics. But only after I've given a great effort to avoid them.

Or... am I just being a big PITA?
Posted 7/25/2011 5:29 AM (GMT 0)
hi thoreau,

i can so relate to your post.  i became frustrated w/my doc as well.  i like him but he wanted me to move to more toxic meds as well, and if i was unwillng to take them, then he wanted me to have surgery.  i did get other opinions, and it seems the medical community are all reading the same "troubleshooting" guide.  it seems to be a very standard pyramid of drugs to try. i really got no new information.  this forum has provided me with more new info than the docs!  i am currently trying delayed release phosphatidylcholine made from a compounding pharmacy - i will give my dr. credit in that he was willing to write me a prescription for it, so at least he is open to some alternative treatments.  i am sorry you are having so much trouble - i totally know what you are going through, and it is extremely exhausting and frustrating...as if we don't have enough to deal with with this darn disease!    don't EVER think you are a PITA...they might like to make you feel like that, but it is YOUR BODY.  they don't have to take the toxic drugs and deal w/the side effects.  it is your body and therefore your choice.  as far as alternatives, i guess just keep trucking along and doing research/reading this forum.  that is all i can think of to do.  i wish there was a better answer!  hang in there, and be proactive...i hope you feel better!

Posted 7/25/2011 5:32 AM (GMT 0)
i forgot to ask...have you tried rectal meds?  sometimes they can really help!
Posted 7/25/2011 10:03 AM (GMT 0)
Kate, thank you.

Have I tried rectal meds? Yes, sort of. I've done mesalamine enemas as well as steroid enemas. The mesalamine ones I tried most recently have something in them that gives me terrible flu-like symptoms. The steroid enemas didn't help significantly. I am willing to try them again, and probably will sometime soon. If you or anyone else could list all the possible rectal meds specifically for UC I wouldn't mind it ;-)

I have also done probiotic enemas that I made at home, as well as enemas made with lecithin powder back when I thought that the PC type supplements may help me.

I'm not yet into a huge flare, but my body also refuses to heal properly... ever. There is just one spot on the top left corner of my colon that always gives me trouble, and quite a bit of trouble at that. lol. The disease was shown to be moving across my transverse colon when checked by colonoscopic biopsy.

I will keep on trucking! Thanks for the support.

Oh, and I'm not sure what medicines you are scared of... but I did take Mercaptopurine (6mp, Purinethol) for many years. I started that drug when deep into one of my initial flares, and only stopped a year ago due to lack of effectiveness. I think sometimes it made me feel a little off, a little fatigued and almost a little poisoned, but I can't be sure about that. Sometimes I still feel sort of off without that medicine. I will say though that it must have helped as I had a clean colonoscopy 4 years ago come fall. Oh how I wish for one of those again!

Good luck with your efforts as well.
Posted 7/25/2011 10:22 AM (GMT 0)
you're exactly the same as me, i'm seeing multiple doctors currently because my GI only has remicade or surgery for me. that is it and won't budge from it

i'm fairly sick at the moment and spend hours just reading through information on the internet, you read one thread and think remicade is okay and you'll give it a shot and then you read another and it scares you away.

literally drives you crazy
Posted 7/25/2011 10:52 AM (GMT 0)
I'm going through the exact same thing. My GI is pushing humira. I want to keep trying the steroids enemas I started a month ago. I, too, want to exhaust all other options before starting remi or humira. I will never say never. Just not right now!

Is very frustrating!
Posted 7/25/2011 11:46 AM (GMT 0)
I've had similar experiences.  Thankfully, for a good part of it, I've had a GP who is very cautious about medications like Remicade and has pushed me to find a GI that works for me.

about three years ago, I had had it with standard-practice GIs and found an IBD center.  I've since seen docs at two IBD centers, and it's like night and day compared to the other.

They still see drugs like Remicade as the end of the line for standard treatment, but they've been open to alternative treatments and generous with their time (even when we disagree).  The one I'm at now also includes meeting with dieticians (and if one wants to, psychologists) as a standard part of their care.

If you're near a large teaching hospital or other large medical center, definitely see if they have an IBD center, clinic, or other IBD-focused care.  I kick myself for not exploring this option much earlier.

Posted 7/25/2011 1:22 PM (GMT 0)
I went thru 3 GI dr.s before I found one that I really liked and who helped me. Even though my outcome was surgery, she helped me understand it all and just generally put me at peace with my decision. She never pushed anything on me and actually listened to me. It's really hard to find a dr. like that. The three dr.'s before her were total idiots. I hope you find  a dr. you can connect with...good luck to you.
Posted 7/25/2011 3:47 PM (GMT 0)
I completely identify with your frustrations with your doctor. I am currently in between - that is to say, without - a GI because my GI and I "fired" each other- he was 100% a conventional drugs guy and became very hostile and sarcastic with me amidst my insistence on experimenting on the side with things like helminthic therapy - the tension was building and one day he announced that he couldnt be my doctor anymore- beating me by one appointment to my own planned termination of the relationship. Fortunately I have an excellent relationship with my alternative-minded MD, and I have discontinued all meds except for LDN for now anyway- but I really would like to have an open minded GI as part of my team- it can be tough to find one though. In my experience, the GI profession , for whatever reason, seems to be the most conservative of the medical specialties in terms of being open to mixing in alternative therapies, and the most prone to having a "God complex" towards patients.
Posted 7/25/2011 10:46 PM (GMT 0)
I was frustrated with my GI when I felt my concerns about imuran weren't being addressed. However, I talked with my family doc, who is a godsend, about the issue and he brought up an interesting thought. He said the reason why my GI wasn't interested in switching me to a 5ASA was due to my success with imuran.

The last time I talked with my GI, him and I discussed introducing 5ASA's because I'm still concerned over my medication. Not only was he listening but he was happy I brought it up. Him and I are planning a schedule for this fall.

With what Probiotic said about the profession is true. And I agree with. They're here to treat the disease with what they were trained for. Not every doctor will treat with alternative remedies. I think we need to find a balance when it comes to doctors.

And Thoreau, you aren't a pita.
Posted 7/25/2011 10:53 PM (GMT 0)
Probiotic,

So you fired your GI, good for you! UC is enough to deal with, without having a pompous arrogant know it all GI to boot, IMHO.

I have yet to find an open minded GI.

How are you doing? Have been thinking about  you.

Posted 7/26/2011 1:08 AM (GMT 0)
My GI doc and I get along fine. I know what AMA approved treatments she has to offer and she knows I'm not interested in biologicals. She won't prescribe any alternative protocols and there aren't any Rx meds left for me to try. Stalemate.

As new UC studies appear I hear about them first here and then she learns about them and offers them (VSL#3, combo antibiotics, etc).

I no longer expect my doctor to "heal" me because that's proven impossible over the years. She's the one who will do my next colonoscopy and who writes my current med Rx. I don't expect miracles just competence.
Posted 7/26/2011 1:22 AM (GMT 0)
I too have had a very similar experience with a GI doctor. I relocated to another area and met this GI for the first time. Right off the bat, she suggested I go on Remicade. She said all the positives about being on Remicade and it is what I need. She sounded like a guest doctor in an informercial selling Remicade. I thought to myself, "Okay? What happened to the questions about my current UC status?"

I later opened a conversation about herbal supplements. She responded saying that it doesn't work and made a joke saying Asians are into herbs. It was like she didn't want to hear anything from me. Besides, I am Asian! Was she blind? And what does Asians have to do with herbs and UC? I don't think she would be open minded to other alternatives, and I wasn't going to continue having her as my GI doctor to find out more what she could do for me. haha

So yea, I don't think you were being PITA, Thoreau. Finding a GI doctor right for you may be like finding a partner.
Posted 7/26/2011 7:05 PM (GMT 0)
oh.no.my.gastro,

Finding a GI doctor right for you may be like finding a partner.

I would venture to guess it's probably harder than finding a partner, haha...

She sounded like a guest doctor in an informercial selling Remicade...

You do realize most doctors are in bed with big pharma, and they get "credit" for whatever $$ big money prescriptions they write, and big pharma lavishes them in return with golf outings, cruises, dinners, etc....?

It's really quite disgusting that they profit on sickness so much.

Good luck finding a decent GI :-)

Posted 7/27/2011 9:19 PM (GMT 0)
I went to see my GI specialist today... and it went amazingly well.

I had previously called the office and was told it would be 1.5 months to see my doctor. What a great system!?... BUT, I called back on Monday morning and spoke with another scheduler who was incredibly helpful. She made notes about my elevated symptoms and paged my doctor. He wanted to see me in two days, not six weeks!

I brought in my chart of all my symptoms for every day, and it made it very helpful and quick to discuss exactly what's going on with me. I've had blood in my stools for about 20 days now, and my average number of BM's per day has risen back above 4. My doctor knows that I won't do Remicade, but he actually came in and sincerely asked me what I would like to do. He told me that his first preference would be to completely smother my disease with Remicade, but that my present symptoms don't scream out a need for the drug. He also told me that my last scope (December 2010) was not "jaw dropping bad" by any means.

I discussed the combination antibiotic therapy with him, and told him that I would not do it if he advised against it. He actually said that it was okay to try! And... this blew me away... he said that he'd like to know about any successes I have with the different methods I've been trying.

He also told me not to be afraid to call them to set up an appointment if I see any rise in symptoms, no matter how insignificant I might think them to be.

This was by far the most successful visit to a GI doctor that I've ever had. I felt listened to, and that my doctor was making a solid effort to work with me. I'm just really grateful about this and wanted to share.
Posted 7/27/2011 10:42 PM (GMT 0)
Thoreau,

That's great.

 And... this blew me away... he said that he'd like to know about any successes I have with the different methods I've been trying.

This is so refreshing to hear. I wonder what he would say to LDN?


 

Posted 7/27/2011 10:57 PM (GMT 0)
Hey guys,

I'm worried about what my GI is going to be like. My experience with doctors in general has been unpleasant. Both my family doctor and the general surgeon I saw were taking care of no less than 3 patients at once, bouncing from room to room or curtain to curtain, here in a flash, gone in a flash. I hated that, because I felt like engaging them with further questions would take away their precious time, so I wouldn't fully explain what was wrong.

A good majority of doctors seem to be on their own agenda, one that is concerned less with the patient and more with how many patients... In effect, I bet they offer the same obstinate advice to all their patients with _similar_ symptoms, because its easier. They would profit if they could just record their voices giving out a diagnosis and just play it back for the patients. "You have <insert disease here>. You should <insert generic solution here>."

I might be just miffed that my doctor wouldn't prescribe me anything until I see my GI in Jan...

No Thoreau, you are NOT a pita for being frustrated with your doctor. In fact, I feel you should be obligated. Modern therapies exist because they have advanced passed traditional ideas. Not all of them are guaranteed to work, but better a doctor who will hear it out over one who's stuck in the past.

@Probiotic
Awesome work, sticking to your guns on that one, lol.
Posted 7/28/2011 12:43 AM (GMT 0)
I did the same thing. My current GI told me that my only option was Imuran. I didn't want it take it. I'm finding a new GI for a 2nd opinion. If he tells me that Imuran is his recommendation as well, I'll take it. My current GI doesn't listen at all. She won't even let me explain my point of view. I refuse to be stuck with someone who doesn't have the decency to at least listen to my thoughts.
Posted 7/28/2011 9:43 AM (GMT 0)
The only doctor I have been happy with is my chiropractor. None of my other doctors know anything about nutrition and diet. They only know how to diagnose and prescribe medication. That's what they were trained to do. And if you reject their medication, then there is nothing they can do for you (barring surgery). My previous GI retired. My new one didn't understand why I even went to see him when I have no plans to take any medications. They are just so used to satisfying patients' complaints with meds.
Posted 7/28/2011 10:49 AM (GMT 0)
I know this all to well. IN the UK it is at it;'s very worst to be honest.
Posted 8/4/2011 5:35 PM (GMT 0)
    I can relate to your situation.  My GI was not very emphatic and was just very "matter of fact" when he recommended Remicade.  I got a second opinion and this doctor was much more caring.  He put me at ease about Remicade saying the possibility of long term side effects was quite low, but still possible.  Unfortunately I had an allergic reaction to it so I was not able to take anymore treatments.  I ended up having to have surgery in the end.  It's kind of a "catch 22" situation any way you look at it.  I always prayed about it and went with my gut feeling.
Posted 8/4/2011 7:43 PM (GMT 0)
Yes! I went through 3 GIs before I found one I liked. The third one is great. I have even more difficulty finding a good GP. Finally found a good one, then she moved. I feel like so many of them tell me incorrect information. And it's easy stuff that I research and can be found all over the internet on reputable sites...kind of baffles me sometimes.
Posted 8/4/2011 10:27 PM (GMT 0)
I think I'm on my sixth or seventh GI. I've given up on finding one that will treat with alternative or complimentary methods. Those types of GIs seem to be concentrated mostly on the east or west coasts of the US. The current guy tolerates and somewhat supports the treatment I've developed for myself because it's hard to argue with success. I keep up the regular checkups to get my sulfasalazine refilled and to do a scope every other year. Most of what has been helpful to me I've had to learn through my own research on the Internet and a library of digestive health books.
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