Are all gastros terrible or is it just mine?

Just venting here. I've been flaring badly for the past month. My gastro listened to my symptoms and then asked: What questions do you have for me? And I asked: What can I do about the flare?

He went through my chart and noticed that my Fecal Calprotectin level dramatically decreased between March and August of last year, but he didn't ask what I did to accomplish this (I took Vitamin D, got a lot of sun, was intermittent fasting, started taking CBD oil, and was also smoking spliffs every day LOL).

I told him about the severe joint pain and muscle stiffness that drove me to pause taking Humira, and he said: Get a primary care physician for that.

I feel so sad after this doctor's appointment. I feel like there is really no one in my corner when it comes to this disease. My doctor has the demeanor of poorly-programmed AI chatbot, and has made me feel like there is nothing at all he can do for me. Which is... probably true.

Sigh.

I've got LDN on order. Maybe that will help.

I'm about *this* close to smoking ganja again, even though I am not very responsible with it... Pray for me, y'all.

If I were you and there was an option to see someone else I would. Even if just for a second opinion.

I'm like Keith. I fired the first 2. The third sent me to the specialist I have now... And I'd follow Dr. D. wherever he went. Like all relationships we have misunderstandings but we are able to work thru it. He's great.

My Colorectal surgeon... He's wonderful too.... My infectious Disease doctor.... Actually my whole team of doctors is pretty darn good. My PCP calls them the cream of the crop.

I'm Sorry you are having issues with yours. It's discouraging, difficult and overwhelming.....to some of us... When we think this is it. This is what my life is going to be like.... But... Yours with the response to the stiff joints... He didn't send you to a rheumatologist? I think I'd probably shop around and see another GI to see if there's a better fit out there. I've done that... And then I scurried back to my old doctor's so grateful that they were still there. (And praying they didn't find out I was cheating on them....)

Clo

Thanks so much for the support, everyone. It really means a lot. I've been feeling so isolated this week and it's nice to know that there are people out there who know what this disease is really like.

I live in a very small rural town, so there are not many GIs practicing, and even if I were to shop around, many aren't taking new patients or won't have appointments until the Fall. But finding a new GI is definitely on my mind.

I would not let driving some distance keep me from finding a new dr. I live in a very large metroplex, including access to a teaching hospital that is within 30 minutes of my home. I have gone through several gi's & was very fortunate to find an excellent one that is 35 miles from my house, 70 miles round trip. He is worth every mile I drive, I've been seeing him since 2004.

Go online & scope out drs out of your area & see what you can find.

Shocking no c-scope! Be your own advocate...and I agree with you getting a new GI.

q

@Sara thank you for the perspective! My doctor is stodgy and conservative but he does always listen to my opinion when I have one, and when I was first hospitalized he spent half an hour on the phone with my mom explaining the diagnosis (although he only asked to talk to her because she's a clinical pharmacist, haha).

I guess this thread has helped me see that my GI is not all that bad, but also that if I am unhappy I should advocate for myself and find someone else.

Thank you, all!

My GI is 90 miles from me and I have to cross the Hudson River and fight NYC traffic but it’s worth it for me.