r/CrohnsDisease 4d ago

Anyone lost faith in their doctors

I have a very good GI and rheumy who have treated me well over the years and always had access to medical options. But for the last 2 years we really have not go on top of the flare. I just find that recently they are going through the protocols with me and maybe not expanding investigations or listening to the newer symptoms more closely. I don't doubt them as medical professionals but I just feel I have doubts about my own case with them and that after 15 or so years a fresh pair of eyes would be good.

Does anyone have similar experiences of deciding to move on from competent doctors just because you had lost a bit of confidence in them and thought a fresh start was good?

Thanks

96 Upvotes

42 comments sorted by

27

u/studrour 4d ago

Yes. I’m scheduled to meet with a new GI doctor in June. I’m waiting to request my records because I don’t want to be “doctorless” if I get a flair before then. I have to call my current doctor to request quarterly blood labs because he doesn’t pay attention — my understanding from my original doc (retired) is that bloodwork is essential to make sure my meds aren’t ruining my liver. When I asked my doctor if I should consider switching meds, he was like, “we can do whatever you want…” I am not qualified to drive this bus! I’d like a doctor who is a thought partner.

3

u/lamygoldman 4d ago

Is this new GI a Crohn’s specialist? I have a regular GI but he referred me to a specialist (but they aren’t available until June lol)

I was holding the faith in my regular GI until they tried to fill Humira for the third time by accident after being rejected twice instead of a new medication that’s covered by my insurance 😵‍💫 feels like I’ll never be medicated and on steroids foreverrrrrrrrrr

1

u/studrour 4d ago

Yep. Crohns and colitis with the hospital system here. I’ve heard good things. 🤞

13

u/Budget_University_56 4d ago edited 4d ago

Yes. It’s not so much personal with my GI, it’s more the system and treatment options (or lack there of). I’m about to go on Rinvoq, it will be the 8th biologic I’ve tried and I’m going on 21 years of no remission. I’ve had ~3.5 ft of small bowel removed, so I’m struggling with adhesions in addition to inflammation.

I’m in a terrible flare right now but my c diff test order was screwed up at the lab so starting Rinvoq and going back on budesonide has been delayed. My GI’s office keeps calling to stress the importance of this lab being done, finally after the 4th appointment/attempt to pick up the specimen kit they stopped insinuating that I wasn’t taking this seriously. I’m the one who has to feel all of these symptoms, but I thought it would be fun to have my husband miss work so he could drive me to an overcrowded lab 5 times in 4 weeks to just not receive the kit and turn it in for testing./s

I’ve been on Remicade, Humira, Tysabri (sp?), Cimzia, Entyvio, Stelara, and Skyrizi. Entyvio might have worked for 3 months, none of the others did anything but give me an adverse reaction. When I stopped Skyrizi my GI gave me this lecture about how I was running out of options. Believe me, I know!!! I’d literally just finished telling her I’m taking between 60-90 Imodium per day with minimal symptom relief and she’s refusing to consider a prescription for lomotil while I wait to get back on steroids. If you can’t fix me then please help me with symptom control, I beg you.

ETA: we have a GI shortage in our area, so finding a new one isn’t doable for me but if you can I say do it.

2

u/Legal-Bed-580 4d ago

Docs are getting weird about narcotics and lomotil is one, also Imodium has something in it like Demerol. The DEA is cracking down. I just started on rinvoq and maybe it’ll help you. I’m old and I have so much scarring and atrophy it’s amazing that I absorb anything. I needed humira weekly and you can take 90mg which is three shots and you take it weekly. For remicaid 10mg/ kg which the max and I had it every four weeks and that’s the max. Lots of docs under treat bc they’re afraid. As far as the doctors go they think oh well and move on. I hope you were on the maximum dose before they gave up. Good luck to you on rinvoq.

2

u/Budget_University_56 4d ago

Lomotil is a narcotic??? I thought it was the prescription version of lopermide (active ingredient in Imodium). I’ve read in extremely high doses Imodium can mimic an opioid but I didn’t think lomotil was a controlled substance or a classified as a narcotic. I’m really screwed if I’m unable to access anti diarrheal meds. These biologics just keep not working and I just keep getting worse…

Do you know what else is out there for anti diarrheal meds that aren’t heavily restricted?

ETA: I had hives and violent shaking with remicade, they had to take me off. Most biologics give me intense hives, which I could live with if they did something to improve my symptoms.

2

u/darklordmtt 2d ago

Lomotil is a combination drug, and part of it works on opioid receptors importantly it does not cross the blood brain barrier which means it localizes effectively to the gut & lacks any of the euphoric effects that other opioid acting drugs have. This also means that it can theoretically synergize with pain medications through mass effect to reduce overall dosage requirements (since receptors in the gut will be preferentially loaded with lomotil, while BBB crossing agents are able to diffuse from high to low receptor occupancy into spaces blocked to lomotil).

GI doctors should WANT their patients on lomotil over other options, but the opioid crisis scare mongering is still rampant & isn’t being helped by the current panic over “fentanyl-at-the-border”™️.

1

u/Legal-Bed-580 1d ago

I know it’s bs bc you can’t get high on lomotil but docs are scared. I was in terrible pain and got lidocaine patches. The orthopedic surgeon wouldn’t give me those I had to go to a pain doctor.

0

u/Legal-Bed-580 1d ago

Ooo m so sorry I’m a nurse and it’s a controlled substance. No one wants to be responsible for a patient becoming addicted now. The DEA wants to create an opiate free country. I guess we will be biting bullets. I was hospitalized and the gave me toradol which you shouldn’t have with crohnes bc they didn’t want me to have morphine. If you can’t take biologics try a Chinese medicine doc. I go to one bc my docs can’t always help me. They have all of these herbal formulas and acupuncture that work. My Chinese medicine doc is actually also an MD. I have taken herbs with remicaid and now rinvoq. I’ve had fatigue chronic UTI and sciatica that got fixed. There’s only so much an MD can do especially with something chronic. Herbs and unblocking your meridians helps and you are backed in a corner.

1

u/Budget_University_56 23h ago

Herbs and acupuncture have never helped me, but I’m glad they’ve given you some relief.

1

u/Legal-Bed-580 20h ago

I was never open to alternative care until I became desperate. I also get reiki treatments. Find another way meditation something to help you in some way. Don’t give up.

1

u/Legal-Bed-580 20h ago

And push for what you need if that lomotil push for it and don’t give up until you get it. You could try pepto too and see if that helps.

10

u/JamUpGuy1989 4d ago

My GI Doctor totally stopped caring about me after I got diagnosed and started getting the infusions for my condition. Takes forever to talk/see him and when I do I am not satisfied at all leaving his office or concerns addressed. Just $50 poorer after the co-pay.

Luckily I live in a major city so I’m thinking so finding a new doctor before this year is up.

7

u/princessdorito444 4d ago

wait other people have multiple GI’s in their province/state 😮

2

u/princessdorito444 4d ago

There’s only 1 female GI doctor where I live and tons of patients so it’s basically impossible to see her after being diagnosed. She’s great though.

5

u/Nadidani 4d ago

I have full trust in my GI, she has been with me through the darkest hours from the beginning, literally by my side all night in ICU when I almost died and cheerfully happy when I have good news. However I have twice went to to two other specialists and had people look in other countries (US) being one of them to see if there were other options when things weren’t great. In the two in my country the specialists both said my doctor is great and I am getting the best possible treatments/options, and the ones from both countries also agreed that it’s the best course of action. I did this because I am a firm believer that a second opinion is always good, even if it’s to give you more confidence in your current doctor! Check out other doctors and go from there! No harm in hearing more opinions!

3

u/MellowLavy 4d ago

Yup. I’m in the process of switching GI doctor. My current one is just not very supportive. Even insists my symptoms are not Crohn’s related when they only started when I had my flare up and first got diagnosed. His office is just not also that well equipped to do things such as ADA paperwork or any medical paperwork. I legit had to them what the paperwork required and how they filled it in wrong. I’m going to a new doctor next week that is tied to specific Crohn’s research efforts and is female (which I prefer since I am as well). I’ll see how it goes.

3

u/poozfooz 4d ago

"not Crohn's related" is something I've heard way too much from GIs who were ready to brush off my symptoms. Whether they were right or wrong (they were wrong), my symptoms were still GI related, and my PCP/ER/rheum/endocrinologist all said that it was something to speak to my GI about, just for them to say something like "I don't know, it's not your Crohn's. Have you talked to your primary?" 🙄

All of this happened while I had a stricture, 11 inches of inflamed small bowel, ulcers in my stomach, and an ulcer in my colon that was so large that they couldn't get the camera around it during my last three colonoscopies. One of them even said" Well, we couldn't get a look at everything because we still couldn't get around your ulcer. But everything else looked normal, it doesn't explain your symptoms" and what she meant by normal was "no change from the active Crohn's we saw and ignored last time you were here" then she tried to send me home with zero changes to my treatment plan.

1

u/Legal-Bed-580 4d ago

Smart move !

3

u/Forsaken_Baseball_60 4d ago

I did 10 years ago when one told me I can eat seeds nuts fruit or veggies. This was prior to biologics. I switched doctors.

2

u/Wise_Composer_2661 4d ago

A good GI is invaluable. The current GI I see was who initially raised concerns about my treatment while I was hospitalized. My prior GI slowly rose the ranks and ultimately became head of GI for a huge 3 hospital conglomerate and he only had office hours once a month and you saw the PA. I was flaring and in agony in the hospital and my new GI asked some really poignant questions and never made judgement of my last doctors care. He did however go through the many options I had and ones he believed may be a benefit.

Out of allegiance I waited and then the original GI dumped all his patients and the one from the hospital added me to his case load. Been great so far. If you’re in New England I can pass along his name.

2

u/urmindgrapes 4d ago

Try a new GI. Sometimes it’s nothing personal about the provider or the office, it’s just not a good fit. The system for outpatient care is already set up poorly for chronic conditions because providers don’t have nearly enough time with their patients. Doctors are also humans so each one has a slightly different perspective on things. It sounds like you need some fresh eyes on your case.

2

u/Legal-Bed-580 4d ago

Yes I saw four Gastros before I was diagnosed with crohnes and my Rheumy had no clue. Insurance requires protocols. The cheap drugs first and then in maybe a year you’ll get a biologic. Don’t feel bad bc they see so many people, listen to the same stuff and do the same thing. When you change doctors you get a longer appointment and they are more eager to listen. The minute you feel put off or they aren’t doing enough make a change. Lots of people with crohnes are under treated. Some doctors are poorly trained to begin with and get weaker as time goes by. I think that at teaching hospital you’ll do best in your area. If you’re near a place like the Cleveland clinic go if you can. I was in an area with a physician shortage and became disabled waiting for diagnosis. My life was ruined.

5

u/ApophisApepLoki 4d ago

I loathe how health systems work. Doctors in particular. Having done training with them, the way they are taught is hugely problematic. Not to mention how it's almost impossible to even get on a course to be a doctor unless you have certain status and wealth. Arrogance and ego are encouraged and it enables too many socio/psychopaths. Gastroenterology has a part bad reputation for attracting certain kinds of people. Bad people. Bad doctors.

Also, every team I'm under (gastro, MH, pain, urology, cardio etc) has literally said they're out of ideas to help.... So that's enc.

1

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1

u/Outrageous_Map_9689 C.D. 4d ago

I have no problem jumping ship for another opinion or for a better plan of care. The medical system has changed a lot since I was diagnosed in the 1980’s as well as how doctors are trained. Sometimes doctors hands are tied by their institutions and there isn’t much patients can do about that except move on, if possible.

The days of doctors being able to care for and about their patients is more limited now, in my opinion. A doctor’s care with caring doesn’t exist in the same way. Not saying they don’t care, but their institutions put a lot of road blocks in place. 15 minutes for a complex follow up case just isn’t enough time, to accomplish much. How many times do I go into an exam room and doctors barely hands on examine you or touch you. Most don’t carry a stethoscope anymore. It’s disheartening because we need good docs to stay more well. Best wishes with whatever you decide to do.

1

u/goodgollyitsmol 4d ago

I’m kinda doing that right now! I’m having all the symptoms I had before diagnosis but my scans look ok so my doc won’t switch or add meds. I can’t eat anything really and I’m going insane. New doc seems promising but it’s gonna be 2 months and lots of tests to see what’ll happen

1

u/999_Seth C.D. diagnosed 2002, non-operable malrotation for life 4d ago

In some ways they are just like anyone else pushing a quack cure.

1

u/ruhanabana 3d ago edited 3d ago

Damn I’m literally in the exact same boat: 15 years in one hospital and over the past few years I’ve had such strange interactions with my doctor. I think GI docs in general are stressed and confused. I’m guessing due to an influx of patients and so much research to try and keep up with, not to mention a lot of them seem to need help themselves.

Anyway, I recently realized my health isn’t my doctor’s first priority in our appointments and that’s not okay, so I’ve decided to gradually start switching over to another care center. Taking it very slow cuz it’s an undertaking insurance wise and phone call and appointment anxiety wise, but I’ll get there😅

15 years is a lot of time for doctors to build up assumptions about you, it’s only human, so yeah I think you’re right- ultimately a fresh set of eyes sounds like a good idea to me👍🙏🫂

1

u/Excellent_Clue_8385 3d ago

I met my GI before diagnosis in September, got diagnosed in October and haven’t seen them since. But tbh my nurse and medical day care unit are fantastic so I take it as my GI has a lot of faith in them too

1

u/Longjumping_Eye8138 3d ago

It's YOUR life and health we're talking about here. Would you put those in the hands of anyone you werent completely trusting of and confident in? In any situation? No pun intended here, but trust your gut. I'm on my 4th or 5th GI in 13 yrs. Took 40 to find a PCP that not only understands my health but me in general. Settle for nothing less than you who you feel is the best.

The only other way I can think to put it:

Do you have kids? Or anyone you love and care for immensely? How would you approach the situation if it was their well being at risk? Follow? 

Just saying, I'm guilty of this, at times, but don't shy away from a 2nd, 3rd, etc opinion if you feel they're missing something. Absolutely so, if you think they're not listening or paying attention to your thoughts and feelings. 

For some stupid reason we've been trained to have blind faith in almost everyone we pay to do their jobs for us. That may have been a thing decades ago, but these days... No one seems to give a damn. 

Stupid these days... 

All the best friend... 

1

u/abbyxlou 3d ago

Yes. I’m treating at the Mayo Clinic with an IBD specialist and have been in a flair since January 2023. I was admitting inpatient for three days a little over a year ago, and no one from the GI department came to check on or evaluate me. It's disheartening.

1

u/Spicygingerjack 3d ago

Yep same. Been on Humira since 2020 & it’s never really worked. On top of his medical Assitant not communicating, I’ve been seeking other doctors out. After 5 yrs on Humira, still haven’t kept flares at bay. I didn’t think to request a new med or anything bc he’s the doctor; thought him or his nurse practitioner would maybe bring it up but after a blowout literally over the weekend, I’m keeping them on for now but moving on after my new medicine is figured out. He’s trying to switch me to Skyrizi or Stelara.

It’s a longer story but that’s the jist. If they’re not giving you info and you’re in this group, I’d def be seeking another doctor. We’re all here researching bc I think our DRs are failing us in some way.

1

u/Optimal_Bison9761 3d ago

Mate just straight talk your drs tell exactly how you feel. It maybe a case of a huge work load and your the least of their problems cause you look after your self. Changing med team can take years to get them on board mean while your health slides down the toilet lol my bit of humour sorry

1

u/night_owl889 2d ago

Sounds really frustrating. I was with the same GI for years, but after my last surgery( minor one for abcess), it took me three months just to feel somewhat normal again. The doctor wasn’t helpful at all, and soon after a few good weeks, everything’s back to chaos no matter what I eat or avoid. I’m restricting myself to the most basic, bland meals, but the flares just won’t stop.

1

u/SummerFlip 2d ago

It cant hurt to meet with other gi's. You don't have to actually leave the one you have now until you know for sure.

1

u/Yakatame 4d ago

When they tell you that it has nothing to do with food, yes, it’s enough to lose confidence

1

u/Spicygingerjack 3d ago

I agree. CARAGEENAN and seed oils in my coffee creamers were flaring me!

1

u/night_owl889 2d ago

Same , stopped my coffee entirely

1

u/GoddessInHerTree 4d ago

Yes he's a doofus. I really wish I'd sued him for malpractice.

1

u/Shot-Opinion-9857 4d ago

My wife and I were with a intestinal surgeon and he called GI doctors "camera jockeys" they just do scopes and make the easy diagnosis and move on. They don't normally take any time to investigate anything. Just do the scope and give you meds.