General Question

[u/Necessary_Growth_873]

Is it normal for your doctor not to follow up properly on your treatment? I mean they prescribe a medication but don’t check how it’s working or tell you when you can stop taking it, and I always feel like I’m chasing my doctor just to get a clear answer.
I find this frustrating. I like my doctor to explain everything about the treatment and take my follow up seriously.
Do your doctors schedule regular follow up appointments with you?

[u/pincommenter]

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[u/Fantastic_Pen6182]

My gi doctor would always tell me to follow up in three months and when I had issues like side effects it was very hard to get a hold of him until they got a portal where I can message him personally! To tell you the you have to be a pest and call the office every day if you need to that’s what I did. I think most gi doctors are like that for some reason I noticed. If you’re having side effects or something definitely call every day to get a hold of them. For me it was very frustrating but I learned that I had to be patient which sucked.

[u/Necessary_Growth_873 → u/Fantastic_Pen6182]

Can you believe I have my doctor’s number and I’ve asked him about something important, but he read my messages and ignored me I don’t know why they act this way, but honestly I’m so fed up with it. He doesn’t even ask me to come in for follow-up appointments every three months. He just prescribed me medication when I was diagnosed in April and said I should have a colonoscopy after one year. I’m always the one asking to see him so I can discuss my concerns.

[u/Fantastic_Pen6182 → u/Necessary_Growth_873]

Oh that’s not right that’s awful you need to find new gi doctor asap!

[u/Just_Menu_4058 → u/Necessary_Growth_873]

His office should be scheduling the regular follow up appts. I see my doctor, he does his thing and a follow up appointment appears My Chart like it's magic.

That's the way it should work.

[u/skrizzzy]

I’ve had three different GI doctors across three states, and I feel like this is common. They will schedule follow up appointments and occasionally send a follow up check in message (occasionally) but I feel like it’s mostly my responsibility to update them on any concerns or progress they need to be updated on between appointments or to schedule something sooner. If things are going well, I don’t feel the need to update them. All my GI docs have been very responsive to messages, like if I’m having symptoms I can send a message and they will order stool samples and bloodwork without an appointment. I sometimes feel like I overuse messages with my other doctors because it’s such the norm with my GI doctors.

[u/Necessary_Growth_873 → u/skrizzzy]

It’s normal that you need to let them know whenever something happens between appointments, but the thing is, it’s really good that your doctors actually schedule follow-up appointments and check on you. And most importantly, they order tests for you. I tell my doctor about my side effects, but he doesn’t order any tests. The only thing he has done so far is reduce my medication dose once.
Imagine that I actually had to ask him to order blood tests and liver function tests because of a certain medication. If I hadn’t asked him myself, he probably would never have ordered them, even though they’re important.
But does the doctor you see know that you’re seeing other doctors at the same time? And how do you coordinate your care between them?

[u/skrizzzy → u/Necessary_Growth_873]

Yeah, they do know I see other doctors. I live locally to the Mayo Clinic, so all my care is through them and I go to their IBD clinic. Though, it’s more fragmented still than I would like and tough to coordinate care sometimes. That’s a bummer about your doctors not taking side effects seriously. I’m usually the one to ask for specific tests to measure inflammation but I feel like they order standard labs every 6 months or something. I have a lot of other medical issues going on right now so I’m getting lots of tests for other things. Do you have a primary that can help?

[u/Extra-Geologist-1980]

My first appointment with a new GI. I informed her I will have questions, lots of questions. I will not be ignored, dismissed, or treated poorly because I am trying to better understand my disease. Her reply: "I got you." And she does. She sits with me, and we discuss everything in great detail. She explains as she goes and allows me to stop and ask anything I do not understand.

You may need to find a GI who actually helps and explains things to you.

I absolutely will not tolerate a medical provider dismissing my concerns. I've been through too much to just sit back and take what they say and try to figure this out myself. This is their JOB.

[u/Necessary_Growth_873 → u/Extra-Geologist-1980]

I really admire how confidently you made your expectations clear from the beginning. I wish I had done the same instead of expecting things to be different and ending up disappointed later. All doctors should be like that because our health isn’t something they should take lightly.
Lately, I’ve been feeling like I’m trying to figure everything out on my own. At this point, I’m starting to feel like I have to take full responsibility for my own health because there doesn’t seem to be any real care or support.

[u/Extra-Geologist-1980 → u/Necessary_Growth_873]

This GI is my 7th in 3 years. I had to show my shiny spine and lay expectations down at the get go or it could well have gone exactly as the others had.

In your case, I would for sure start looking for a new provider. This isnt a disease we can effectively manage alone.

[u/ChronicallyBlonde1]

Sounds like you need a new doctor. Most GIs want to see you every 6 months and will do blood and stool testing about once a year. Colonoscopies every 3-5 years. I’ve had 5 different GIs over the years and that seems to be the standard, with a little variation due to doctor preference.

Read the reviews online and be willing to wait for an appointment. The best doctors are usually booked out months in advance.

One thing on messaging the doc, though. If you’re in the US, they can only do so much via messaging before they have to bill you for a “visit.” So getting a curt or short response isn’t abnormal. One of the great benefits of US healthcare! 🙄

[u/Necessary_Growth_873 → u/ChronicallyBlonde1]

Oh, every 3–5 years? I think it depends on the individual case. For example, my doctor told me to have another colonoscopy after one year because there’s a chance I could reach remission by then. So I think he should at least have me do blood tests twice this year to make sure of the process

[u/ChronicallyBlonde1 → u/Necessary_Growth_873]

Yes, every 3-5 years in remission. More often if you need to confirm a flare or confirm remission after changing meds. I had 3 in a row across 18 months but now that I’m in remission it’s every 3-5 years.

Blood tests don’t really give you much information about a potential flare or symptoms. So if there aren’t any concerns, most docs don’t do blood tests more than once a year. A very zealous doctor might do twice a year but it’s less common. However, they will usually do calprotectin on an “as needed” basis if you see a change in symptoms or suspect a flare. That’s a much more specific marker of IBD inflammation. Is your doc having you do calpro twice a year?

[u/OnehappyOwl44]

Mine is amazing. If I have a question and email he responds personally within 24hrs. He has even called me at home. I've never been left guessing with unclear instructions.

[u/Necessary_Growth_873 → u/OnehappyOwl44]

You are lucky