I don't know what to do

I posted earlier this week under GI woes. My GI left the practice a couple of weeks ago. I was suppose to start Entyvio, but wound up with shingles and couldn't start it until it was healed. This week things were healed up and I called to schedule it, but the nurse needed orders from my new GI. He wouldn't do it until he saw me.

At first it was going to be next Thursday. I sent an email to customer service and told them I thought the transfer of my care was being handled very poorly. The next day the GI office manager called and told me that the new GI wanted to see me and verify the shingles had healed before authorizing Entyvio. Ok, I kind of get that. They managed to squeeze me in. This morning the new GI's nurse calls to tell me this will be a quick visit, the doc is just going to verify my shingles is gone and that's it.

So I get there, and the new GI comes in, and immediately starts in on why am I being put on Entyvio. I tell him it's the only thing I haven't tried and he wants to know what happened with the others so I explain how all the anti-TNFs gave me joint pain and other symptoms, and then he finally pulls up my chart and starts looking. Then he sees my labs from earlier in the year and says my fecal calproctetin is fine and doesn't indicate a flare. He then sees the CT scan done and that I have 5.7 cm of inflammation in my TI. He says that CT scans are always inaccurate and I need to have a colonoscopy. He says I have a mild case of Crohn's and doesn't understand why my old GI was being so aggressive. He asks to see where the shingles was, and looks at it. And says he thinks I need to be referred to an IBD specialist. He knows one that's a little over an hour from where I live. He says because I've failed all the treatments he doesn't think Entyvio will do anything for me.

He refuses to authorize my Entyvio. I asked several times what I am suppose to do about my worsening symptoms and that I don't think Entocort is doing much. He says if things get worse to call. I repeat that I'm experiencing worsening symptoms and he says well you've had a lot going on. You've had shingles. So he finally says he doesn't want me to start tapering Entocort which I was suppose to do tomorrow, and that's it. He says his nurse will be in to schedule the colonoscopy and I should get in touch with the IBD specialist.

This guy was a complete ******. This was the first time I met him, and my understanding was he was just going to verify my shingles and authorize the Entyvio. Now, I've essentially been refused treatment, and have nothing to address my worsening symptoms.

Oh, and he asked if I'd seen a surgeon before, because cutting out the part of my intestine that keeps inflaming would solve my problems!!!

My instincts are to run away from this guy as fast as I can. Spending 5 minutes with me and talking at me is not a great way to start off. I don't know how much of this is because I pushed to get an appt or if this is just how he is.

I don't disagree with the idea of seeing an IBD specialist. I had no idea during the appt if my insurance would cover it, and I told him that. I have looked it up and he is in my network.

I also don't have any issue with having a colonoscopy, but my old GI told me that the CT scan would tell us just as much. I have to take two days off work...one for the prep and one for the scope, and almost every scope has either caused a flare, or worsened my symptoms.

Should I try and ride it out and do what this guy wants? Or should I go ahead and bite the bullet and find a new GI? Any thoughts?

Lol. Says you have mild Crohn's, then says you need to be referred to an IBD specialist. And would rather try surgery before medication.

Run for the hills and find a new GI ASAP.

PS: I'm in the same boat of thinking that Entocort isn't doing very much. Reduced from 9mg to 6mg a few days ago and so far there has been no worsening of my symptoms. If anything I'm doing a bit better than I was. My IBD nurse prescribed me more Entocort, but I'm not gonna take it: I just want to be off this stuff now.

He sounds like a straight up d*ck.
But he also seems to follow typical GI procedure.
Every time I get a new GI doc, they do the same damm thing, which is heap a lot of scorn on the actions of the previous GI. Basically, they're thinking, 'I don't know that guy. That guy isn't me. He probably did everything wrong, and so I'm going to do everything again, but better!"
As a result, they order a blood test, a colonoscopy, if you're even remotely due for another one, and they refer you to a surgeon.
I've had 3 GIs in 3 different states since 2009 and they've all done this!
My point is, no GI would give you Entyvio without really checking you out internally and that thinking he would read your chart ahead of time and then just sign off on Entyvio was a totally unrealistic expectation.
By all means, go find another doc if you think this guy was a super douche, but trust me, he or she will still order a scope, blood tests, and refer you to a surgeon.

The office manager for the GI department has been helpful. I talked to her Monday and told her that the new GI was not a good fit for me, and would anyone else be willing to follow my old GI's treatment plan. They had a staff meeting yesterday afternoon so it was good timing. She said they discussed my case and they all agreed that I needed to have a colonoscopy before preceding with treatment. The other GI is willing to take on my case, and she's going to see what she can do to schedule me to see him so I can meet him and see if I like him. They are down 2 GIs so this is crazy for everyone.

I have a colonoscopy scheduled for the 24th with the GI I don't like. I've got an appointment with a GI in a different clinic to see if I like him, and that's June 1. I'm hoping if I transfer out of the clinic that a new GI will be alright looking at the scope report. I'm going to call tomorrow and see what they say at the other office.

In the meantime, I'm trying to readjust my expectations that I'm going to have to start all over and not get immediate treatment. I think the entocort is affecting my mood, and I'm having a lot of anxiety. This is all a lot more emotional, frustrating, and difficult to deal with that it seems like it should be.

Thanks Gumby. I'm trying!!

I saw my GP this morning, and I go to a clinic that has all the specialists and everyone can see all the records. I really like that, but my GP told me she thought the two GIs in the practice had little to no experience with CD and that was why they were uncomfortable with my old GI's treatment plan. She recommended I go outside the practice. She told me she'd prescribe prednisone if I felt like I needed it while I was shopping around for a GI. That made me feel a million times better. She also recommended I go ahead and cancel the colonoscopy since a new GI would probably be the one who wants to do it, and she also thought it was an unnecessary risk based on my history of it either causing or worsening a flare.

I got one recommendation from her, and I think I'm going to finally go to the CCFA support group in town and see if I can get more recommendations there.

I hate that I'm limping along, but I feel better about this than dealing with some jerk I don't like.

Thanks for the info on the CCFA meeting Habs. That will help me manage expectations.

Turns out the big GI group in town only lets me make an appt with one doctor. I can't get appts with multi docs to interview them, so this is whole process just keeps slowing down.

Oh, thanks scifigal2k. That's a good idea. I didn't think about phrasing it that way. My therapist suggested I call to ask who is good at handling CD, but I know that wouldn't get me an answer.