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Posted 9/13/2022 10:49 AM (GMT 0)
What are your best tips on how to advocate for yourself and be forceful with doctors when you think they are not taking you serious and or when you feel something is wrong but they dismiss it? What was everyone's length of time from first seeing a doctor to finally getting a diagnosis?
Posted 9/13/2022 1:42 PM (GMT 0)
Be persistent
Don't be intimidated
Speak the facts of how you are feeling without downplaying or exaggerating your symptoms
Develop a 2-way dialog with doctors so they really listen to you

During my last big flare I knew I was really sick -- I couldn't walk from my car to my office at work without having to rest and no one was listening to me. I finally went to my PCP and asked him to run every test he could think of, that I had good insurance and he wasn't paying for them anyway lol. He did. And during one test (an echo cardiogram) I passed out while laying down, BP tanked and the techs were freaking out. Since I was already at the hospital, I went to the ER and they discovered that I needed blood and iron infusions. I had had blood tests just a couple weeks before that and my hemoglobin was only slightly low, but it apparently dropped pretty quickly. My GI finally listened to me and we stopped Entyvio and started Humira which didn't work either.

I had started mildly flaring in January. Tried everything I could think of and went to the doc in March. I asked for an Entyvio levels check and whether we could move the infusions to every 6 weeks. At the time I only saw a physicians assistant and she kept fobbing me off -- telling me there was no such thing as an Entyvio level check and that the infusions couldn't be moved closer together, gave me Uceris. Right before my next infusion in May I asked again about the test and was told I didn't need the test for insurance to approve moving the infusions closer together but insurance denied the request because I didn't have a levels check and no recent scope. Luckily I was able to get the scope in June and of course it showed that I was moderately flaring. But I still had to wait to get the levels checked in July. Insurance finally approved 6 weeks in late July since I didn't have antibodies and I started every 6 weeks in August -- 5 months after I asked for the increase -- and by that time I was severely flaring and Entyvio was no match for it. I had 2 6-week infusions and then October is when I needed the blood transfusions,

That flare taught me to not to just blindly trust the medical professionals and to be more persistent when something is wrong. In hind sight, I should have sent the PA info about getting the levels checked and more frequent dosing. Entyvio was still fairly new at the time and they didn't have many patients on it. We, as patients, often know more about medications than the medical professionals do because we have more time to research things since we only have 1 patient to take care of (ourselves) rather than the hundreds of patients a GI practice has.
Posted 9/13/2022 2:24 PM (GMT 0)
Thanks you for your reply CCinPA....I admire how you were so persistent and how much detail you have given of your experiences.
Posted 9/13/2022 3:02 PM (GMT 0)
Be persistent! I will say that my doctor is the best! He listens and spends a lot of time explaining things. If I have an issue and call him, someone always responds very quickly.
Posted 9/13/2022 3:29 PM (GMT 0)
If this is your gastroenterologist ignoring you, perhaps your primary care dr can help out. You have mentioned before eye & joint issues. These are things your primary care can make referrals, like an appt with an ophthalmologist & send you for plain film xrays. Have you considered finding a different dr? It's worth trying if you keep getting ignored.

Good luck.
Posted 9/13/2022 3:56 PM (GMT 0)
I find my GI very very good. But clearly I have extra intestinal stuff going on. I find my rheumatoligist doesn't give me much time or credence because I'm not presenting with swollen and stiff joints and my scans and bloods are clear. Though clearly my IBD is doing something more to my joints than my colon. It is frustrating.
Posted 9/13/2022 5:04 PM (GMT 0)
I’d been seeing a GI in a city an hr away for my diverticulitis attacks but hadn’t seen him for almost 2 years after my surgery (8 inches of colon removed and reconnected).

I don’t remember now what my original symptoms were now but I went back to my GI who did a CT scan with a colitis diagnosis. A few days later I woke up to bloody diarrhea so went to my local hospital ER. I took my CT scan and diagnosis but all they focused on there was my triple-high pancreatic enzymes so they admitted me with a diagnosis of pancreatitis. I knew pancreatitis presented with severe high left sided pain and I had none so I knew that wasn’t the problem but they wouldn’t listen. They had “traveling” GI but not on staff. One came in and agreed with me it wasn’t pancreatitis, said colitis can throw off numbers like that and was going to do a colonoscopy the next day. Nothing happened the next day and then I found out he had left that morning. Next day a different GI came in and all he did was give an order for steroid enema and that would be all I needed I had no instructions for how long to hold it so only did for 20 minutes. After 9 days in that hospital with 2 different GIs and 3 different “hospitalists” I was getting worse and all that was offered to me was Imodium!!!

I checked myself out and went back to my GI an hour away who advised me to go to his hospital ER. Which I should have done right away but it’s pretty miserable being in a hospital an hour away from your family and friends. There ensued another 9 days in hospital semi intensive care as by then my heart rate was close to 100 and not dropping at all.

I guess my moral of the story is if you can’t find a dr to listen to you find one who will. That’s easier said than done, I know and soooo time consuming because it always takes 2-3 visits to find if a dr is a good fit or not.

After I left the hospital I found out that my old GI didn’t take my new insurance so I floundered for awhile til I find a local GI (who had trained as a fellow under my old GI). He was so great! He finally got me on the way to remission. But then he moved away. I still miss that guy. Back at my old GI office now but with a different dr. He’s good but I still wish my Dr O hadn’t moved He was a great listener and so empathetic. And he was fun too — I like a dr I can joke with.

Anyway I can only advise patience and persistence. If a dr brushes off your concerns it might be time to shop for a new one if you can’t make them listen.
Posted 9/13/2022 5:28 PM (GMT 0)
The best way that I advocate for myself is to show up prepared. Doctors' visits can be overwhelming and easy to forget important information to discuss with the doctor, so I make a list of my current age, medications, symptoms (with dates), and any other issues. I then make a list of questions that I want to discuss. I print out a list for myself and also the same list for my doctor. I give it to the doctors, we go through the list and I write down the answers and suggestions that they make. My GI appreciates this and I get very productive visits out of it.
Posted 9/13/2022 5:52 PM (GMT 0)
What medication are you on to treat your UC?

It sounds like you have been with this rheumatologist for a bit, what is his diagnosis? What about getting a 2nd opinion with another rheumatologist?
Posted 9/13/2022 8:39 PM (GMT 0)

ks1905 said...
The best way that I advocate for myself is to show up prepared. Doctors' visits can be overwhelming and easy to forget important information to discuss with the doctor, so I make a list of my current age, medications, symptoms (with dates), and any other issues. I then make a list of questions that I want to discuss. I print out a list for myself and also the same list for my doctor. I give it to the doctors, we go through the list and I write down the answers and suggestions that they make. My GI appreciates this and I get very productive visits out of it.

This is great information!
Posted 9/13/2022 9:40 PM (GMT 0)
My GI loves it when I bring a typed list of questions too! I did that when I met him (looking for a new GI) and that sold me! Sometimes I even send him a message in the patient portal before my visit rather than bring a paper with me.
Hope you get some help!
Posted 9/13/2022 10:13 PM (GMT 0)
YES, always advocate for yourself!!! Don't except horrible or subpar care or flat out lies from doctors. MyChart is good for getting everything in WRITING as proof and so they can't gaslight you. I have more to add on this topic but am too worked up right now.

Always, always, always advocate. I learned this early on and still sometimes mess it up.
Posted 9/14/2022 12:02 AM (GMT 0)
I also add previous medications to my list, reactions to medications, and any symptoms or improvements since my last visit.

My GI gets a copy of the paperwork, I have a copy for myself, and we go over the list together.
Posted 9/14/2022 6:57 AM (GMT 0)
The first appointment is where I get the information. Asking questions about that information comes during the second appointment.
Posted 9/14/2022 9:16 AM (GMT 0)
Keith, do you send a copy to your doctor via portal (if yes, how many days in advance) or do you bring with you? From what I read you are seeing Dr S. in the city. Do you travel to see him or have online visits?
Posted 9/14/2022 12:48 PM (GMT 0)
I print them out and bring them with me. He’s very familiar with me and my case; I’ve been a patient of his for 18+ years and have followed him from Mount Sinai to NYP Cornell and back again to Mount Sinai.

My health is pretty stable so I don’t ask many questions through MyChart.

I live about an hour and 15 minutes away, it’s worth it to me to travel to see him.
Posted 9/14/2022 4:35 PM (GMT 0)
After last colonoscopy in 2017 my Dr wanted me to go on Humira or Remi.
He told me this in recovery room after colonoscopy
He was my Dr for 30 plus years and he knew that I could take care of my UC pretty well
Not as knowledgeable as some on here but mentally tough to handle this disease
Well I said NO to Remi and Humira
Was tired of meds after 30 plus yrs and I didn't want to deal with side effects of biologics
Told my Dr right in recovery room it's time for surgery
So I'm happy I stuck to my guns and did what I thought I needed. Luckily my Dr agreed with me
He didn't disagree. He gave me name of father/son team at Mount Sinai in NYC before I left hospital
I didn't use those Drs but put the wheels in motion for surgery
Good decision
Keith btw Dr Shukla has moved to Northwell Health up in Westchester. Bummer
Posted 9/14/2022 6:58 PM (GMT 0)
Also, I don't hesitate to get a new doctor if I don't feel they are taking me seriously. I guess that's one of the biggest ways to advocate for yourself.
Posted 9/14/2022 8:08 PM (GMT 0)
I think a good bit of us assumed it was Charlie's gastroenterologist that was not listening to him/her.

As it turns out it's the rheumatologist not the gastro. From what Charlie has said the rheumatologist has done labs & xrays that came back normal. I have asked Charlie what was the rheumatologist's diagnosis but no answer on that. I think if a person is unhappy with their dr, it's time to get a new one.

Also, we don't know what medication Charlie is on for UC or when the last scope was.

Keith gave some great info about preparing for a visit.
Posted 9/14/2022 11:54 PM (GMT 0)
I don't have any issues with my lady surgeon,she is in charge of any surgical issues.
Then again to advocate for myself just before she did a rectal stump exam.
I told her "First Do No Harm." I did not want her sticking her finger through the end of the
rectal stump, Death Vader is only 3-4 inches long. She was super careful.
But if I did, say with a gi doc, I might say I have been studying
IBD since before you were born.
oldmike
Posted 9/15/2022 9:47 AM (GMT 0)
Charlie,

I pretty much do what Keith does. I make notes with any symptoms, medications currently taking, questions, and possible treatments. I send it to them in the portal the day before and I take 2 copies in with me. I do this with each doctor. It helps me and them.

On my rheumatologist... My GI sent me to my PCP, who sent me to my rheumatologist. Testing took a couple of months. I'm bone on bone in both knees so there was a diagnosis. It's been 6 years and we are still working on it. She did send me to a surgeon for a second opinion and I did get shots in my knees. It helped for 3 weeks. I've gotta go back in to see him.

Oh... And when my CRP level is high.. my joints go crazy. I'm in so much pain I can barely walk.

Clo

Post Edited (clo2014) : 9/15/2022 2:50:03 AM (GMT-7)

Posted 9/15/2022 11:06 PM (GMT 0)
I really like my GI. I feel that he's an advocate for me and my health. He makes sure that I understand everything that we discuss and what to expect, I never feel rushed when I'm in his exam room. He's offered to get me medications prescribed off-label (lots of paperwork and rejections from the insurance company). I may have been one of the first people on HW to take Stelara.

I fired 2 other GIs before I lucked into finding this one and I will travel for him. For most of the time I've been his patient he didn't accept insurance (It's a NYC doctor thing), I would pay out of pocket and it was worth it for me.
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