When is it time to change GI docs?

The doc that dx'd me was the GI for the practice I went to. He was called in and made by the head of the practice to move all his appt's to see me. he was not happy. So when he was giving me a flex sig (the first time I saw him) he told me to stop crying becuase it wouldn't do any good and roll over. Yeah. Bad. I switched GI's withing a few weeks. Those few weeks were horrible. He and I argued over everything. I found my GI through my aunt who was a nurse. I have been with him now for almost ten years. I have never thought of switching again. This GI listens to me and answers my questions. I have taken more responsibility with my disease and (mostly through this forum) have found what the "normal" treatments are in what order. I beleive he is doing everything he can.

I say if you don't feel that your treatment is aggressive enough then you may want to find a GI who will be more aggressive. It's more important that you are comfotable with your treatment than feel loyal to a doctor.

First off, in Austin there are two groups of GI docs. No matter how hard you look, they're all in 2 groups. I've been to both. They all have the same list of meds they go down and it usually begins and ends with prednisone. I'm hoping this doc in Houston, who is a colo-rectal specialist and not a GI, will have more, so I'll let you know if it's worth the drive.
First I had Stassen. He dx me and said "you have ulcerative colitis, you can find info about it online". Wouldn't tell me anything at all no matter how much I asked. Then later on when I was having trouble dealing with the fact I was 29, never sick, didn't even take aspirin, and would be on drugs the rest of my life now...he basically told me to deal with it and take my meds like he told me b/c he knew EVERYTHING about it b/c he was at the leading edge of the research. I was going to change anyway, but that's when I started the vitamin E enemas and scd (which might work for you since you are early on). I was well for 18 months with that.
Then I tried Friedman. I was well when I went to see her, and pregnant. She said there were lots of options when you're pregnant before steroids (since it can stunt growth of the baby) and then wouldn't you know? First dang medication she called in was steroids when I was afraid I would flare. Then, I told her I thought I was allergic to mesalamine b/c of a few incidents when I took it and she basically made me feel stupid and told me that wasn't true. Then in her paperwork that I just got to give to this doc it says she thinks I have an allergy to it b/c of what I've told her. geez. So I was in the hospital, it was worthless, and when the high dose liquid steroids didn't work it was straight to surgery. When I told her I wasn't going to decide that all doped up, especially since they wouldn't do the type I wanted, she looked at me like a poor puppy who'd just got hit by a car and wouldn't make it. Not to mention the whole comment about it being like having your appendix removed.

The best results I've gotten ever were from the vitamin e enemas and the licorice tincture. Nothing from the docs.

I started out on Canasa 1000mg suppositories. Tried that initially at night only. Then did night and morning. Symptoms changed throughout the whole ordeal. Initially it was constipation then D. Then later on it became constipation only with mucus when I had gas (very disturbing :( ). Tried the enema but felt really queasy on that. Went back to taking canasa on/off. My symptoms were always there - don't think I've ever been in full remission, but everything was pretty tolerable.

Went to Cozumel, Mexico and prior to the trip my stomach started hurting (abdominal pains) and more D than usual. Came back and I felt like hell. Been on/off with this hell feeling ever since. Lots of D some days and blood as well. Taking canasa now nightly in addition to Asacol 12 pills a day (3 times a day). That worked great for the first few days - never felt better. But then it stopped working so I stopped the asacol thinking it wasn't doing jack. Symptoms came back hard again so started back up on the asacol and felt instantly better the next day. Switched to lialda and have been feeling great for a few days, but then symptoms came back just like they did with the asacol. It was so darn strange how it started up again. Was having solid stools, everything perfect, no pain. THen all of a sudden one night started having bad abdominal pains - went to the bathroom, had two solid stools then immediately after diarrhea and blood all in the same sitting. It's like it was backed up and/or something reacted negatively to my body. Really frustrating.

I do enjoy visiting my GI doc. Typically, he schedules me 3 months out and I always end up rescheduling earlier because I can't deal with the current symptoms I have at the time. The last colonoscopy I had was back in February and things were still limited to proctitis. I asked for another one but he is hesitant to give me another scope (he jokes that the insurance company is going to think he wants a mercedes). He's a good sport about things but sometimes I wish he was more aggressive in his treatment.

The last few visits have been kind of stalemates in leaving with any answer - basically coming down to 'well I'm already giving you everything I can think of for your condition.' I also get frustrated when he says I have a very mild version of UC (proctitis) even though it doesn't feel like that. I had some parasite tests done through a different doctor (a stress management center) and nothing came back. My regular GI doc never had that done on me - just colonoscopy. I don't really get blood work or ESR tests done through my GI doc. It's usually just consultations. I can't help but wonder if i'm fighting something bacterial since i got so bad after returning from mexico, but I already tried 2 different antibiotics from the doc (flagyl which i've taken a few times and another kind for traveller's D). Still, it seems odd. I was fine during the trip and then when I came back - about a week later - things just went to hell.

Flagyl could kill most anything parasitic! I would say keep a diet journal for about a month to see if there is any pattern to foods/drinks consumed & bouts of D. Back on the subject of doctor, though, your GI SHOULD be watching your ESR-- because it is a gauge of inflammatory activity in the colon. Otherwise, he sounds o.k. One reason I say that: both of my gastros have been gung-ho scope. Apart from expense, the procedures themselves can be irritating & bring on flares-- so I appreciate any gastro who limits their frequency, barring major symptoms. I think QUINCY would second me on this-- she's another UC oldie whose gastro tries to maintain patients via 5-ASA meds + c-scope every 3 yrs if stabilized & she generally functions very well. Less can be more! It's also helpful to engage in regular stress-reducing activity, something like lap-swimming, dancing, a bit of hiking, yoga, as you feel up to it. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Can I join you on your soapbox?

I've been through six or seven gastro docs here in Arkansas and have yet to find one who can discuss intelligently anything that's not mainstream pharmaceuticals or surgery. I've found a couple that allow that probiotics, omega3 supplementation, dietary modifications, etc. "won't hurt you to try," but nothing more helpful than that. These gastros have run the gamut from old guy with years of experience on the brink of retirement to very intelligent young Indian lady and a young guy working as a fellow at a famous teaching hospital... it's all the same.

As far as I can tell, the progressive gastros who take a well-rounded, positive approach with diet and supplements are clustered on the east and west coasts. I'm making plans to visit the Hoffman Center in NYC.