Taking away a diagnosis?

I hate the gastroenterologist I've been seeing. He is a complete ego-maniac and a total jerk, but he's the only one with any openings. The only ones worth any consideration have waiting lists 3 months long, are retiring, or aren't accepting new patients. I suppose I could wait, but throwing up every day, losing weight, and spiking fevers aren't really on my list of things I could learn to live with.

I saw him about three years ago, when I first started having symptoms (nausea, vomiting, abdominal pain, rectal bleeding), and he told me I had IBS and that it was "all in my head" and I was "overreacting." He did no blood tests or endoscopy, and came to the IBS conclusion after spending 40 minutes or so ranting and raving about some other doctor (who had done an EGD on me) stealing his patients.

I was later diagnosed (not by him, I refused to go back to him) with mild early Crohn's disease through Prometheus test, pill cam, and colonoscopy. I started Imuran, went into remission, and was doing okay for several months. Then I had a partial bowel obstruction in August, and everything went downhill from there. Note I've been vomiting almost every day since AUGUST. I started Remicade in January at the instruction of his NP. I've had two treatments so far.

I saw him again today after having an EGD/colonoscopy and pill cam study last week. EGD and colonoscopy were normal; he didn't even bother to LOOK at the pill cam. He said that there's a small chance that the Remicade did its job and healed any endoscopic evidence, but very unlikely. Since I'm still having symptoms, it's probably not Crohn's-related.

Then he went on to say that I probably have never had Crohn's in the first place, that it was just a coincidence the Imuran worked, and that, I quote: "I stand by my original diagnosis. You have IBS."

Screw that. IBS does not make you vomit, IBS does not give you bloody and tarry stools, and it most certainly does not react to Imuran. Nor do they find IBS-related ulceration and inflammation in the stomach, small intestine, and colon!

He's told me that I should go for the third Remicade treatment (WHY?! If it's just IBS, why the heck would a third infusion matter?!), then stop. Also told me to stop Imuran and Pentasa. I'm supposed to go in for a stomach emptying study or something next week, then see him again in March. Maybe, just MAYBE, he'll have gotten off his butt and looked at my pill cam test by then.

I concede that yeah, if the pill cam is clean, then this current vomiting bout probably has nothing to do with Crohn's. That just means he needs to step it up and figure it the heck out. But to say I never had Crohn's in the first place? Just because HE personally can't find anything after Remicade? I just can't believe the measure of this guy's ego. He's rescinded my diagnosis and is taking me off all the stuff that even makes it possible for me to function at a basic level. This really doesn't feel right to me at ALL.

I think it's partially because he looked further into my records and saw that I made a complaint against him to the clinic's manager about 3 years ago.

I'm going to email my internist and see what he can do, if he can get me into someone else. I would be happy if I never had to see Dr. Evil again. And I really don't want to see the consequences of going off meds.

Any ideas?

I had to look to see if you lived near me, because I had almost the exact same experience with my GI doctor. He has spent NINE YEARS telling me I had just IBS. Two appointments at the specialty hospital and they were like, umm, you don't have just IBS. No way. I'm classified as 'unspecified IBD' at the moment.

Anyways. I just wanted to tell you I feel your pain. Look for a new doctor if you can, but if nothing else is available, maybe see if your primary care doctor's office wouldn't mind keeping an eye on you. This is what I'm doing right now, as I have no real other options.

Good luck.

Although it sounds like your gastroenterologist has zero people skills and is handling you and your case in the worst possible way, I must admit your symptoms, to me at any rate, don't match "mild" Crohn's. I can't help thinking something else is going on, and, no, not IBS - maybe a different GI condition, infection, or whatever.

I think you need to see another doctor, even if you have to wait 3 months for it. There's probably a reason why your current GI is the only GI with any openings.

Aww onedaymore I am so sorry you had to see such a jerk. I will keep you in my prayers that you can get in to see a more compassionate doctor and get the right treatement. Hugs!

As for the vomiting daily, the only time I had that was when I had stricture. And it sure sounds like you've got something going on in there. Hope your family doc can help you out. Good luck~

Find the best one that takes your insurance and make an appointment. Ask to be put on the cancellation list and let them know how much notice you'd need to get in. I once got a call in the morning that a spot had opened up that afternoon, my original appointment was still three weeks away.

Then, do whatever you need to do until you get in to the new doc. Good luck, I hope you can find help soon.

Thanks everybody for the support and advice. You're AWESOME!

tsitodawg said...
I just noticed on a previous thread that you had possibly wanted that referral afterall. His name is Kyle Barnett and he is at Granite Peaks G.I. clinic in Sandy. He is right across from the Alta View IHC hospital. let me know if you need more info and I would love to help you out. I am in Ogden and there are a few more G.I.s up here that may help you if your insurance will not cover him. I noticed that you are down by the Y. GO COUGARS!!!!!!

I looked him up, and my insurance covers him. Woohoo! And what's even weirder . . . his clinic is one of my SEO clients, but I was under the impression they didn't take my insurance, hence why I never looked into them before. Small world. I've also got another Salt Lake GI group as a client, but up until last month or so, they didn't take my insurance. Have you had any experience with Gastroenterology Associates? I guess one of the things I'm worried about is that if I have a bad experience with any of the ones at Granite Peaks or Gastroenterology Associates, that might not bode well for the business relationship.

I emailed my internist, and he's also really confused. He said he would go back and look at my most recent test results and Dr. Evil's notes and see if he can decipher this guy's reasoning. He's also mentioned sending me to a different GI not associated with Dr. Evil.

Still throwing up almost every day -- the days I don't usually involve a lot of gagging and dry-heaving. I've got gastric emptying study next week, but judging from Dr. Evil's follow-up habits, I won't ever get the results