I've had scopes done by three surgeons rather than a GI dr....given the situation, would the colorectal dr be willing to do the scope for you? That would e my first choice. If you can't do that, maybe have that dr recommend someone?

I went through the same - very bad doctors (not just GI). Lots of them. I think some of us are just here to act as the canaries in the toxic mine. But, and it's a big BUT, I now have doctors who I finally love. All of my doctors are very good, very intuitive, and they all actually listen to, and assess, my concerns, questions, and suggestions. I know it doesn't help you much with the fear right now, but I'm sure you'll find someone competent.

If you go to see someone and you don't feel comfortable, then don't schedule an appointment. Make an appointment with another doctor.

(Yeah, a GI was responsible for my toxic megacolon. Dr. Schrock at UCSF confirmed that. And you know how much doctors like to state other doctors did something wrong, so that admission was big.)

kathy

I have had 3 GIs in the 40 years I have had IBD. The 1st one 1972-1992 when I had UC (Dr. G, now retired), the second one 1992-2010 (Dr. R, in New York City), and now Dr. O, who became my GI in 2010 for insurance reasons which forced me to drop Dr. R. All 3 were/are excellent doctors. Dr. O did his Fellowship and was trained at Cleveland Clinic by none other than the famed Dr. Bo Shen, Dr. O's mentor. Maybe I have just had good luck but my confidence in all 3 was/is very high.

It seems that two other regular posters on this board are also seeing Dr. O, from what they have told me.

I did see one other GI in CT before deciding on Dr. O and we really did not hit it off very well. At the time, I had disputed my insurance company's decision to not cover Dr. R, on the grounds that there were no competent GIs familiar with J Pouches in Connecticut. The insurance company responded in writing that Dr. O, whose office is a 5 minute drive from where I live, is a competent J Pouch expert. I must admit that they were correct. Basically it was my own health insurance company's response to my dispute of the lack of coverage of Dr. R that led me to find Dr. O. Maybe I should thank ConnectiCare for the "referral" to Dr. O, but I am not going to.

I love the expression Kathy! Canaries in a mine!
You are all so right...I have had some rather insensitive ones, dangerous ones, totally obliviously ones and a couple that I would have loved to denounce to the board of surgeons (but am way to afraid of being black listed!)...and then I have the ones I owe my life to...the miracle workers who called me back long distance in the middle of the night, grabbed a flight and flew out to save my life when every other doctor told me that I was a lost cause...they make up for (almost) all of the other grave diggers who wear a white coat. Those guys missed their callings and should all be working in the morgue! (no insult intended to the morgue workers!)...
The best way to find a good doctor is to alway talk to others who have been treated by him/her...and go with your gut (no pun intended).
Sharon

Unfortunately, there are lousy doctors out there, just like there are lousy practitioners of any profession. The difference with doctors is that there is so much more at risk if they are inattentive, incompetent, or negligent. Even the best doctors can make mistakes or miss the mark on judgement calls, but it is less likely to occur and at least you come away feeling that they care and are giving it their best shot.

While it is not possible to have a guarantee that no further errors will occur, I think our best bet is to choose providers based on personal recommendations. I don't know the particulars, but the snafu with Dr. Williams could have been one of those miscommunications that could happen to anyone (unlike the other complaints you mentioned). Usually glowing ratings are earned. But sometimes doctors who are technically great practitioners are sort of "cold fish" when it comes to bedside manner, so we are less forgiving if they err.

I think you are on the right track by asking for personal referrals. Myself, I've had a three outstanding GIs and a one cold fish. They were all OK, but I ditched the cold fish because I couldn't communicate with him.

Jan

I think we can all relate, and it does take time to trust. When I initially flared (acute pancolitis), I was extremely mismanaged, not just by my first GI, but by several ER physicians and an attending who sent me home despite the fact that I was having 20+ bloody bms a day and vomiting.

I won't name names, but here are a few examples of what happened to me:

- (prior to being diagnosed with UC) on a return visit to the ER for ongoing bloody stools, I was scolded by an ER doctor for coming back and "wasting ER time." He refused to schedule a colonoscopy despite the fact that I had not yet had one. I was also told that at 26, I was too old to have UC. He gave me a prescription for cipro and lomotil and told me to go bother my GP instead and stop eating at "fast food chicken places." (which I never did anyway!)

- (after being diagnosed with pancolitis). First GI gave me a prescription for pentasa ONLY (not even prednisone!). His attending then discharged me after 4 days despite the fact that I was vomiting and still going 20x.

- Returned to ER after being home for 3 days, with fever, tachycardia 140+, hypokalemia, and still having 20+ bms a day despite the Pentasa (which of course I now know was a useless med for my state of UC). I was made to wait in the ER for over 7 hours, sprawled over chairs. I was clearly the sickest person there, but kids who were walking around eating bags of chips from the vending machine were seen before me. My name was finally called and I blacked out when I stood up.

- re-admitted, GI said I hadn't given the Pentasa enough time to work and he wanted to wait another 3 days before starting IV steriods.

- 2.5 weeks later, still suffering fevers, vomiting and bloody bms despite being in IV steriods, CT scan revealed air bubbles in colon wall. Bye-bye colon.

Anyway, that is just some of the stuff I went through during my very brief stint with UC. I agree with kathy that some of us are indeed the canaries in the coal mine of a broken health care system.

That being said, in the end, I found two surgeons who I love and a now a fantastic GI, who I am still just starting to get to know but who I'm very impressed with.

The way I see it, when it's not an emergency, when you go for a consultation, you are evaluating the doctor just as much as the doctor is evaluating you. If you don't feel comfortable with the doctor, there is no reason to go back. You know your body best and you have to trust your physician and the level of care they are providing. If you don't, time to move on to someone else.

There are a lot of good doctors out there and I really hope you can find the one for you.

OP, I don't know if this is his area but Dr. William Hunter at OHSU did a big complicated stomach surgery on me that went smoothly and has been 99% succeessful. He also has a wonderful bedside manner (his chief resident at the time, not so much). Yes, he is one of those few GI's who also does major surgeries.

I'm so sorry about everything you've been through. What you describe is just AWFUL!! No patient should have to put up with that - you may even have had grounds for a law suit.

Just to give you a little hope that there are good ones out there....

My previous two GI's I could take or leave... pretty neutral opinions on them. But my current GI I absolutely LOVE. We've developed quite a strong doctor-patient relationship over the last couple years with my frequent visits, and I always feel like she listens to me, knows what she's doing, and cares about my situation. She's young and energetic, very friendly, and always returns my phone calls personally. We have solved some situations and made decisions over the phone (without an apt) or even once when I was at the med center for something else and happened to walk by as she was on the computer and we started chatting. She even gave me her cell number once when she knew she was going to be away from the office. When she felt she was out of options with my UC, she personally referred me to a UC expert at a close teaching hospital (UCSF) for a second opinion before recommending surgery. I can't tell you how comforting it is to have a GI I trust have my back through all this.

There ARE good ones out there, so if I were you, I'd keep searching and switching until you find one you like.

Good luck!

I would ask my Internist/GP, anyone else you know locally with IBD. I don't personally know anyone with a j-pouch.

Plus now each time I go to a new doctor I look them up on the state board. I don't know if you can do that where you live but I would think so. I find out if they've had complaints, how old they are, where they went to college etc. That's how I know my local GI trained at Mayo and my C/R surgeon at the Cleveland Clinic.

That said I hated my C/R surgeon's scope and he missed a C-diff infection and took no biopsies, just a FYI. They have to go to special schooling to do flexible scopes, he did "see" my cuffitis which lead me back to my GI. He's a surgeon not a GI and at least around here GI's are the scoping experts and the surgeons do surgeries.

Are you around a large university with GI's?

I see why you are apprehensive/scared to death of GIs but there really great ones out there.

Good Luck!

Dave, I could not find a William Hunter at OHSU.

Unfortunately, the bad doctors I went to were referrals from my GP. I do not put any trust in doctor's referrals. I have been asking everyone I know with UC and so far no one really likes their doctor! The Gi's in Portland do not have records of great schools or interesting residencies. I have found someone up in Seattle that trained under Bo Shen.

Hopefully the Seattle GI will be great. My GI is good but as he said, he deals with the entire digestive system and the specialist he sent me to at Mayo just deals with IBD.

I think some doctors fake they know more about somethings as they don't want to admit they don't know. I've heard that you know you have a good doctor when they aren't afraid to refer you to someone else.
Good Luck!

Sorry, it's JOHN Hunter. Good guy!

Plan a trip to Texas. I can hook you up with an awesome GI in North Dallas. Dr. Kimberley Persley. The last "regular" GI I saw referred me to her as my case was to difficult.

If you have a good relationship with your surgeon, he/she may be able to help you or refer you to someone. If they suggest someone you have seen, tell him/her what you told us.

I had great surgeons in Portland but never found a GI I thought cared very much. They are mostly drug pushers who know little about actually dealing with IBD. Sorry, hope you find someone.

Thank you everyone. I am going to try Dr. Douglas Shumaker. Although he is not directly involved in pouchitis research. He does have academic supervision over a study on the use of a compound that is a combination antibiotic/probiotic that Dr. Shen of the Cleveland Clinic has been using to treat antibiotic resistant pouchitis. His research papers indicate he is more open-minded to new treatments than other gi's in his office.
I am still very nervous but hopeful.

I hope all goes well and you receive the treatment you need. Please let us know how it goes.

You had mentioned the consideration of going to Seattle. I drive 1 1/2 hours (if there is no traffic - from Bellingham, WA) down to Univ of Washington. Dr. Scott Lee is who I've just started seeing, also due to having a difficult time with finding a good team locally. I was told by another GI doc (who I really, really LOVED) in Seattle that if I want THE expert in j-pouches in the region, Dr. Scott Lee at U of WA Digestive Health Clinic is the man. I have a unique and somewhat complicated case, due to also having lost a large amount of small intestine and having short bowel syndrome, and I was very happy with the care I got there on my first visit. Best of luck to you. I too can appreciate the difficulty in finding a good team.

Nikki, Thanks for the name. In spite of my having an infection the first date I was given for a pouchoscopy was Jan. 28th! I went back to my colorectal surgeon and he is doing a scope next week. He also switched me to Cipro and Xifaxin which already seems to be working!

Glad to hear you are getting some relief. May you find a fabulous GI doc soon!

Jeez, just went to a pre-scope appt with the surgeon to find the scheduler had accidentally switched my appt to the end of February! The scope is Friday. Many apologies were made but it was hard to be gracious. I really hate needing to constantly see doctors!

Yes, I did receive your message.Thank you for the detailed information. The scope was a waste of money. The doctor did not do the bacterial, parasite or fecal pathogen tests I asked for, only a visual examination plus biopsies.
The pain continues to be exhausting and crippling. I would much rather be back to having uc than this. Living on opiates is not a fulfilling life.
On the other hand I did find a very good support group in NW Portland for people in chronic pain due to incurable illnesses. The group focuses on developing successful behavioral strategies, exercise and diet. I was surprised at how many competitive athletes are members. You can never tell what people are living with just from looking at them.

I don't know anyone in your area.

But I can tell you this.. I saw someone else uses a surgeon for their scopes too. But my surgeon told me a few weeks ago that after my takedown, I needed either him OR my GI to do a scope every year. Apparently it is not out of the norm to use a trusted surgeon for things like this.

Just passing on what my doc told me.