Horrible experience with new GI doc-

OK so today I saw my 3rd GI doc since getting the diagnosis of proctitis last year. How many will I have to go through before I find one I like? I saw another GI doc in this same practice a few months ago but wasn't impressed. I have a friend who sees the one I saw today and recommended him to me. It definitely proves the point that everyone has their own opinion on what they believe to be a good doctor vs. a not so good one.

So this guy went over the Promethius bloodwork results with me. Most of the information was self explanatory. It does read "ulcerative colitis". But then this jerk goes on to explain in a very monotone Ben Stein kind of way, the progression of medication that's used in UC and that is auto-immune blah blah blah and that most likely I could develop another auto immune besides UC. All of this information is stuff I heard but the way he presented it to me left me feeling hopeless. He told me I shouldn't feel hopeless because there has been so many gains made in the medical field with respect to UC. Maybe to some people it feels that way, but taking medication that helps with UC but causes other serious medical issues is not necessarily a gain for me. Again, another doctor who knows nothing about diet or other treatment modalities that can help. I'm not naive enough to think anything other than medication at this point in time can put those with UC into remission. But keeping pharmaceutical companies rich is not what I had in mind for the course of my life. Surely there are other things like diet, supplements and other things for stress relief that could help. I told him I had two trips planned in August and that I was concerned I would need medication. He kept cutting me off mid sentence and telling me if I'm the type of person whose flares are brought on by stress, maybe I should take other medication-(he was talking anti anxiety stuff). All I meant was what the hell do I do if I'm out of state, get a flare and need medication. I wanted to know that he's send in a script for canasa for me.

Overall, I should have known better than to expect something different from this appointment. But I left feeling down in the dumps. It felt all doom and gloom. Luckily I have another GI on my list to try. My integrative doctor recommended another GI doc who is a regular GI doc but is very conservative with meds and is open minded to alternative treatments and wants patients to explore dietary modifications too.

To me, one thing a doctor should never do is make you feel like there's no hope. Its difficult to convey over this message board the tone this jerk used but it made me feel horrible.

When you have one more GI to try, I would say go for it.

If you cannot get along with your doc, it's useless.

Please don't take this the wrong way but sometimes we get upset if the things said are not what we want to hear. I had a similar experience with a GI doctor who I thought was a total jerk and I ended up dumping him like a hot potato. But looking back now many of the things he said to me were spot on. I just didn't want to listen at the time. My husband can attest to that. Having said that, you need to find someone you are comfortable with. I went thru a few GI doctors before I found one that I truly liked. Sometimes its the way they talk to you and not what they are saying that turns you off as well.

I can relate.  I have seen mine about 6 times and have e-mailed many times.  It's always his way or he's pissed off.  I have told him I can't ASA meds because they make things worse and he keeps pushing them on me.  A lot of these doctor's act like their god and how dare you question them.

I too am looking for a second opinion.  We all have to listen to our own bodies and not let the doctor's put us all in one mold.

I am so thankful for this forum.  I have learned alot and will ask my doctor a lot more questions.

Hang in there.  I too don't want to be put on auto-immune drugs the rest of my life.  Maybe I'm still in denial. However, I'm going to research everything I can before I go down that path. 

It's nice that this doctor took the time to explain everything to you- my first GI just explained the potential problems with pregnancy at our first appointment. That's it. No information about the extent of the disease, medication options (didn't even know there were rectal meds until I'd had UC for a year and a half), etc. I was 24 at the time and had no intention of getting pregnant. I understand that it is frustrating for someone to tell you things that you already know but there's no way he could have known if your other GI's fully informed you.

It's rare to find a dr that will promote alternative therapies that do not have loads of peer-reviewed research articles to back them up. Remember- drs are scientists. They have hard evidence that drugs work but only anecdotal evidence that other things work and, since it is so easy to get sued for malpractice, lots of drs stick with the hard evidence only.

The next time you see a dr, write out a list of questions for them. If they both hear you ask AND see the question written in its entirety, it is more likely that they will understand what you are asking. It will also keep you from getting flustered and forgetting to ask something.

If you are out of state and have symptoms, you call your dr, explain what is going on and provide the phone and fax number of a pharmacy near you. Very few drs would refuse to send a rx for a drug like Canasa. A lot of GIs will just give you a rx for a year's worth of refills and tell you to take it as needed.

Try the next GI on your list- ultimately, you should like the dr you see. However, I can see why your friend recommended this one. He sounds like a traditional dr that wants his patients to understand the disease and have realistic expectations about the future course.

krissy...what medications were you wanting to be on and what are you on at this point?

There are only so many UC meds one can choose from and what to expect if one doesn't work, have some options..etc.
But you know that already, don't you? For proctitis, there are specific initial options.

Hope your next GI will work out better for you.

q

A lot of private-practice GI offices are set up to perform screening scopes to the 50+ set and not much more.  Sure, many of them deal with diagnosis and treatment of other GI problems, but I've never found that they're good with chronic illness like IBD.  They just don't have the experience.

The best move I've made in the last several years was to find an IBD clinic/ center.  You'll often find them at large research institutions and teaching hospitals.  They aren't necessarily well advertised, so you might have to do some digging to find one.

The IBD clinic I go to now has GIs, NPs, nutritionists, surgeons etc. all under one roof, with a lot of communication among appointment scheduling, doctors, nurses, and different specialties.  There is none of the nonsense that I dealt with when I saw GIs who were in private practice.

I hope you like the interaction climate with the new GI better. You have IBD to worry about and why have the added burden of not trusting or respecting the GI?

We can't know about this unpleasant monotone that generates feelings that cannot be described adequately on a forum. We can know you are upset. We can listen and suggest and hope you get to a better situation. What he may have considered professional, you may have considered disrespectful. Or maybe all of the rage you might have against IBD and parts of you colon get projected on to a small deficit of the GI's manner. We can't know.

It does sound like you see the wisdom of maintence therapy and if you are seeing a GI who does not advocate maintence therapy, well that is not going to work out. You are the customer. You are buying the therapy, recruiting him to your therapeutic team (which ideally you should lead). If he does not fit, then fire him.

But get your money's worth. It is not clear to me that you asked if he ever thought maintence therapy was useful, or under what circumstances he would initiate a maintence therapy. I am not sure you got a chance to ask why he thought it important to get off the Canasa - instead of switching to a maintence level. Possibly this is because he kept cutting you off, as you reported. If so his bad. My point is that his answer would have been more knowledge for you. You may or may not have placed great weight on his reasoning, but at least yo would know why. (IMO speculating that it is just so you will flare again and he can write another short term prescription, and thus get rich - well that sounds more wonky than true. If you were on a maintence prescription, he would see you every so often flare or not. By law he would need to see you at least once a year to prescribe.) Just consider if you were not trying to ask these direct questions, that the questions are useful (even as you switch GI's). He might mention a health risk, or make a point about proctitis vs UC, or make a point about your case in particular. You paid for the consultation. May as well find out "why not" even as you move on to someone who advocates maintence therapy.

If you have a better relationship with your primary, maybe ask them about the necessity to get off of Canasa vs switching to a maintence dose. Maybe they can follow up with his office.

Here's hoping you get on better with the new GI, and that there is a better alignment of views on the value of maintence therapy.

Quincy-my c.diff episodes were a few years ago. I do take probiotics every day.

If that doc is against using Canasa for maintenance, he is just plain dumb when it comes to treating UP. Try to find a gastro who subspecializes in IBD treatment. Also, as Kloe mentioned above, it's wise to formulate your Qs & even jot them down prior to your office visit. From my experience I wouldn't expect a new doctor to care about my upcoming travel plans; I would just ask for the Rx med to keep on hand in case of emergency need when the doctor's office is closed. One needs to be very pragmatic and stick to specific Qs and requests, especially when starting out with a new doctor. Most of them are not particularly empathetic, though this guy sounds downright lame, besides. Maybe he is "burnt out". Good luck with finding a better doctor-patient relationship soon. / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)