When is it time to change GI docs?

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tiesto81
Regular Member


Date Joined Nov 2006
Total Posts : 204
   Posted 10/21/2007 11:51 PM (GMT -7)   
I am curious in people's past experiences when they've found it time to get a second opinion or change GI Docs? My current doctor seems really nice and pretty knowledgeable. I've been seeing him for 3-4 years. However, I feel like I've made no progress with my proctitis. I got a second opinion once and that doctor said everything seemed in line with what my other doctor was already doing based on the colonoscopy reports he had seen. Wondering what others experience where in this area. Thanks.

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 10/22/2007 3:15 AM (GMT -7)   
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.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07
Prontonix once daily for acid reflux, zofran twice daily for nausea


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 10/22/2007 6:50 AM (GMT -7)   
My GI is useless, I suggested I try Combination Antibiotic Therapy and she gave me a 10 min lecture about the fact that she's got 22 years experience and I just found something of the internet and now think I am a doctor...

I think its political.

G

DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 10/22/2007 7:40 AM (GMT -7)   
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.
dx late April 2005 with pancolitis UC after birth of my son (second child)... meds didn't work (or rather they would work and then randomly stop)
Started SCD and vit e enemas 12/9/05...that and meds = remission 12/11/05, off meds 12/20 (were on the way out before that), stopped continuous enemas 3/23 and use them only when I feel a flare coming on. 
Beautiful perfect baby boy born with no drugs and only vit e enemas during pg - 10/14/07
He also had no gas or discomfort while nursing from me being on the diet.
Didn't use the enemas last flare since I was nursing and regretting it now, wasted time in the hospital with drugs that did nothing but ravish my body, now on my own and almost better... vit e, weaning pred, licorice
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5136
   Posted 10/23/2007 8:40 AM (GMT -7)   
Proctitis can be very stubborn-- hard to subdue. What meds have you taken/used for it to-date? / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

tiesto81
Regular Member


Date Joined Nov 2006
Total Posts : 204
   Posted 10/23/2007 8:50 AM (GMT -7)   
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.

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5136
   Posted 10/23/2007 9:50 AM (GMT -7)   
It sounds like you're doing o.k. as long as you stick with the meds, but you'd like to do better. If the doctor tests your blood regularly & ESR (sedimentation rate) is acceptable, the next Q should be your most recent scope results. What level of inflammation showed up & where? What did GI say about follow-up? Did you ever have ova/parasite stool tests done if you suspected travel-related GI infection? Ruling out such infection or inflammation detected thru scope, you can think over what dietary intake/change might have prompted your sudden bouts of D. Some of us have "killer" foods or drinks that can make the UC act up, things like pepperoncinis or alcohol. For me, seeds are very bad. Hope these thoughts help! It doesn't sound outright like your doctor is the problem-- unless he/she doesn't communicate well so that you're not getting enough info about test results or alternative meds. I think the really bad GIs are the ones who throw all kinds of med at the patient w/o adequate explanation & follow-up, but yours seems properly conservative in that respect. / Old Hat

tiesto81
Regular Member


Date Joined Nov 2006
Total Posts : 204
   Posted 10/23/2007 10:08 AM (GMT -7)   
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.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 10/23/2007 11:37 AM (GMT -7)   
The Mexico trip raises a red flag for me, too.

I'm a firm believer... if you're not happy with the care you're getting from your gastro, keep looking for one who you feel is responsive and will really work with you. Unfortunately, there are alot of bad ones out there, but there are some good ones and, from what I've read on this forum alone, many gastros have very different approaches to treatment. I'd advise you to keep searching. You might want to consider seeing a naturopathic or complimentary medicine doctor, if you have one in your area, for a totally different view of managing your disease.
Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
No explanation for right side pain and thickening of bowel wall
 
Maintenance dose sulfasalazine, back on a pred taper for first flare in years
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5136
   Posted 10/23/2007 3:18 PM (GMT -7)   
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.])

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 10/23/2007 4:04 PM (GMT -7)   
This is a soapbox, but I find that doctors in general are by the nature of their training, molded to be very conservative and closed-minded (thus those that aren;t are excceptional gems) and yet, within this conservative, closed-minded subset, GI docs make most other docs look like raving liberals.

I am not talking politics, I am talking being open-minded to new ideas, cutting edge research that isn't yet fully "evidence based", etc.. Think how nowadays, probiotics are considered pretty standard common sense even by many mainstream docs, for intestinal health (heck, mainstream even acknowledges now that the "flora" of the gut is a ig player in IBD). Yet 20 years ago if you asked a doc, much less a GI doc, about probiotics he;'d l;ecture you about not falling for "quack" ideas. Unfortunately that is the same thing now about ideas such as the hygiene hypothesis (parasites used as immune modulators etc.) to name but one example.

I don't know what it is about GI's in particular that attracts the dullards, but it does. I think we should all shop around, but not dump a GI until you have a good one available, because even the dinasours tend to be booked up months in advance for new patients.

The ideal would be to have a progressive-minded GI and also an alternative doc on the side in case you want to try something that isn't fully 'doctor approved' yet (but might be in 10-20 years, but who has that kind of time on their hands.)

The funny thing is, there was an old style-sounding country-doc style GI who also happened to be very open-minded- that Dr. Eugene May who used to run that CCFA advice forum until they shut it down (very sadly). I used to love his web-board- awesome advice, a mixture of conservatism and open-mindedness.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 10/24/2007 7:16 AM (GMT -7)   
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.
Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
No explanation for right side pain and thickening of bowel wall
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/24/2007 9:25 AM (GMT -7)   
My last GI doc - whom I LOVED and am only switching from because we moved 1500 miles way - told me I should never settle with my condition. That remission is the goal and we just need to find the right combination of meds to get me there. At the time I would have jumped up and hugged him - if I had the energy. My other GI had let me go for months yo-yoing on prednisone and just couldn't find the time to squeeze me in for an appointment. In fact - it only took 3 days longer to get into a NEW GI.

So, if you think there is more that can be done - go for it! Tell them that remission is your goal - and your KNOW it can be achieved and that your current state is NOT acceptable!

Good luck!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
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