Big Specialist Appointment Anxiety

[ARSalerno3]

Hey everyone, so I finally have my long awaited Crohn's specialist appointment next week and I'm pretty terrified. Had a really bad experience with the guy who diagnosed me. He later refused to treat me. Or rather said he said I would be fine without medication and I continued to get sick and he stopped returning my phone calls, I waited 15 weeks before finally trying to find a new doctor. And that's not an exaggeration, I wrote it down on the calendar, once I got to the 15th week, I gave up. My pharmacist was asking me about how the doctor thing was going and I told her and she was like "maybe he died..."

So anyways, really terrified that I will waste several hours driving to this specialist, get told "eh, you don't need medication" and then send me on my several hours drive home with no help, again. Any suggestions? I got all my records transferred from the last gastroenterologists and from the hospital, including the colonoscopy, endoscopy, fluoroscopy, and IBD blood panel. I have my diet/sickness journal ready to go, it has dates and times (the old doctor refused to let me tell him anything from it, which if not for my mother's intervention, I would have just left the room immediately), I have my medication list, is there anything I'm forgetting? I'm really upset just in general about this lol. I almost canceled last week out of cowardice on the grounds of "if this doc doesn't treat me, I'm truly out of options, unless I want to drive like 6 hours to the next specialist."

What do you guys think? Any advice would be appreciated. Thank you for your time.

 

[my little penguin]

Did the last doc give a reason for not treating ?
Did the colonoscopy show anything on images ?
Did you have the biopsy slides sent for review at the be place?
Pathology typically sends the slides but only if the new place wants to see them .
MRE /capsule imaging sent ???
Last bloodwork for inflammation sent ?
List of meds tried -when /dosage /what happened and when stopped .
List of symptoms before dx .

good luck on your appt
You might be surprised
Also you don’t have to see a Crohn’s specialist
Just have a gi who is willing to listen and work with you .

 

[ARSalerno3]

The last doc, no, he just said it wasn't disrupting my life enough to warrant anything else. As for the colonoscopy, no, nothing was found other than evidence that made them suspect Crohn's in the first place. I know nothing of the biopsies, other than what they told me. I did get the pathology records transferred too, all test results that I knew about, I had sent, x-rays, scopes, I would assume the biopsies, they're important but who knows, the last doctor was...irritatingly unhelpful. Although we did not do any of those capsule tests, I'm genuinely unwilling to go through more tests now.

Speaking of tests, and my unwillingness to do more, that stems from the bloodwork and fluoroscopy. I sent the bloodwork and they BETTER be cool with it because the last 2 times they made me do the IBD blood panel, I fainted and was out for minutes, puked as soon as I woke up the one time and I was furious, I told them nurses they owed me my breakfast back, because I initially REFUSED to do second IDB blood panel...I was actually super furious about that one....then the fluoroscopy was a surprise. They just told me I had x-rays in the morning. I didn't expect to be there from 8am to 2pm, and to miss work, and to have to call from the exam room to get someone to put out my dog, feed my animals, and then I was sick for 4 days. For the record, that was the sickest I ever was. I had a fever the whole time, my "spot" hurt (where most of my inflammation sits when I get sick), like, I'm already chronically constipated, let's add to it.

Meds, I've tried nothing for the Crohn's other than my consistent heartburn, which has been super cured by the heartburn meds. The other symptoms, the fevers, the mouth ulcers, yadda yadda, those go untreated.

And as for the specialist, so there are only 2 hospital/doctor networks in my hometown, one is where I was going, and the head of their entire GI was the terribly unhelpful doctor, and the staff all said if he can't fix me, no one can, so the second he stopped trying, I jumped ship. When I attempted to go to the other one, and transferred my initial records, I got a call from their GI department and they said "since you have Crohn's disease and it's been untreated since July 2017, we're requiring you to see a specialist, we're canceling your current appointments and going to reschedule you with the specialist." It was super weird, they treated it like I had to see a special oncologist. And super inconvenient because the GI doc I was going to go see was 15 minutes away, now I'm driving about 2 hours away.

And your point about listening, the head GI doc was WHOLLY unwillingly to listen. When he asked "what brings you to me" and I go "Ok so one July 7th, 2017, I got sick for the first time and..." and I go to tell him the symptoms, and the occurrences, I have my list of dates, and he goes "No no, I don't care about the past, I want to know what brings you here today." Without skipping a beat, I told him "Well I didn't die in my sleep so there's that." And my elderly mother was not amused, I was, certainly I was lol. But then I explained to him "you want my history or you just want to skip to tests because it sounds like you're not gonna listen" which was accurate because he didn't listen.

He also then got really hung up on my mom having Celiac, and he tried to treat her and she's like "no stop, I have a Celiac specialist I see, my son is your patient." And then he lectured us about Celiac for almost a half hour, and then, THEN looked at my Celiac test from 2017, 2019, and 2020, and he was like "huh...negative." You can see why I left him. He was unwillingly to listen, I was hardly able to even get a word in. It made me so upset, I kinda just withdrew the rest of the day, I gave up. Took my dog to the park, went back home, went to bed. At like 5pm. So because of that, I am very, very afraid to see this new doctor. Like, I'm afraid of her already. Not because of who she is but of what she could NOT do, if that makes any sense at all.

Thanks for the reply, I really appreciate it.

 

[my little penguin]

The thing with crohns is if you go on some type of meds most require regular blood draws .
These check sed rate , crp , anemia , liver function , kidney function etc….
My adult child has been getting blood draws done every 3 months since age 7 .He is now 20.
Pathology slides are the physical slides and not just the paper report .
It helps to have a concise history on paper with dates -one per line of significant things like symptoms started July xyz -colonoscopy and date
Fluoroscopy and date etc
Basically 1-2 pages typed you can bring two copies
One for you and one for the doc
This way they have the history and you can fill in if they need more info .


If blood draws are an issue the new Gi office probably has a medical coping psychologist on staff.
They help with things people have trouble with
Pain ,blood draws , needles for meds that are shots or iv ‘s
so they can be very helpful and are specific to chronically ill patients who have more to deal with .

only need one or two session for my son when he started out
He took humira shots at age 9 which stung like a wasp sting . Thankfully the humira has changed and doesn’t sting anymore but the psychologist helped my kiddo not be in pain from the shot .

good luck

 

[ARSalerno3]

Already have the dates and definitive timeline, both handwritten and in record form, like medical records form. The written one is about 28 pages long. and I pride myself on my record taking, since I am a professional historian. That added to the insult when the previous doctor refused to even let me go over those notes...

I don't know if the biopsy slides will be sent to the new doctor, only because the previous hospital is well known for their unwillingness to share, to the point that our governor has to regularly sue them to make them do it.

SO blood draws you say, well then. I either need to be sedated before hand or just give up. Because I can't keep fainting and I can't keep puking, my dentist is tired of fixing my teeth and is tired of me puking from my Crohn's.

As for the psychologist part, no need, I already have a therapist. Been seeing her for 10 years, my blood phobia is not one to be conquered any time soon.

If it's a shot, I would rather eat the shot, I'm ok with needles, it's blood that's the issue.

This is starting to already look to be a genuine lost cause...

 

[my little penguin]

There are ways around your blood draw issues
Remicade is by iv infusion
You can get your blood taken while laying in a bed when they place the iv at every infusion .
Infusions are once every 8 weeks.
The monitoring requirements are different for every drug.
There is also een.
Exclusive enteral nutrition
Basically formula only (peptamen , vionex, boost etc…) with no solid food
No blood tests for that one
Crohns exclusive diet is a combination of een plus very specific foods in a specific order Again no blood work
The new Gi would be aware of these
just ask
However scopes /imaging may need done again if it’s been a while since your last scope .
Explain to the doc what happens when you get blood taken /work with your therapist on cognitive exposure behavior therapy .
It won’t happen overnight but explain to the therapist the health need .

 

[ARSalerno3]

@my little penguin

Hello, I figured I would add this here, I finally saw the doctor and it was a complete waste of time. The only things she said is, 1 ) she wants my mouth ulcers biopsied, she did not schedule it nor tell me who does that. 2 ) she wants me to see a dietician, which they tried to set up and I kept telling them that appointment was too early, and I slept right through it. I guess no one cares if you work nights like I do. 3 ) see a motility specialist and never see that Crohn's doctor again. Straight up, she just turfed me, pawned me off to another doctor who I have to wait half a year to see. And 4 ), her best idea, was to wait till I have another flare up, try and get an ambulance to take my to the hospital, to expedite the ER process and get scans of my spot that always hurts while I'm in bit flare up, to see what's going on.

I am very unhappy with being thrown out to this new doctor who I didn't give them permission to schedule me with. I've like flipped a coin every day to figure out if I'm going to cancel it or not. It's very far away, physically, and it's a long time from now, and I've lost so much respect for medical professionals that like, I suppose the motility doctor is a clown. Like with a red honk nose and white makeup and big funny shoes, at this point.

The new doctor, who I will never see again, was nice enough to show some respect when she asked to check my spot, the one that always hurts when I get a flare up, she actually asked permission. The last doctor just went to town and nailed my spot and I wanted to puke immediately. I wasn't feeling too bad that day, so she got to see a bit heap of nothing. On top of that, she that repeating a colonoscopy, or another endoscope would be pointless, so that was nice. They also had all my records, which was a load off my mind.

I will almost assuredly forget about my motility appointment, and when I get the reminder, I will flip my coin again about canceling or not. It's a huge waste of gas and money to go there. I don't think I should have to pay them for literally getting no treatment but what do I know.

My apologies for the long thing, I thought a long time about to say. If you read this, thank you, if anyone else reads it and has input, thank you in advance.

 

[my little penguin]

Dermatologist biopsy mouth ulcers
They are looking for another cause -sweets syndrome is one possibility as are others.
Motility docs are worth it .
Depending on where the slow gut is happening -gastroparesis (delayed gastric emptying ) can cause a lot of pain and issues .
My kiddo had mild gastroparesis in his stomach/duodudem for years and had to take meds /eat small meals .
It’s better now but without the delayed gastric emptying study we would not have know what was causing the problem .
Motility docs also deal with guts that are too fast .

good luck

 

[my little penguin]

Here is why it’s important to see the other docs
I have seen more than a few parents on here with kids who “had crohns” but something seemed off -they didn’t get better or the symptoms didn’t fit it scopes were weird
Only to find out once they saw a different type of doc it was actually something different going on
Sometimes more than one thing that had different treatment
I know it’s annoying but it’s good they sent you to someone else instead of just saying “its nothing go away “
Abd not suggesting a path forward

 

[ARSalerno3]

Well, I have no referral or recommendation for a dermatologist, so I guess I could call and get one. I do see my new dentist next Monday, they may have an answer.

We'll see about the motility doctor. I will need a ride as it will be entirely too early for me to drive that far. I don't appreciate having to wait another 5 months for a doctor who has, to be honest, a 1/3 chance of being helpful.

As for not suggestion a path forward, that's something they did. The path forward is "get sick, go to hospital, let's have a look" or "see this guy who will take months to see and will be a gamble." Those aren't paths forward, those are stasis, those are what I've been doing since April 6th 2023. Waiting to see someone lol. That's not me being mean to you or disrespectful, or anything, I'm just saying "I'm tired of waiting but what's another 5 months, I just waited half a year for nothing."

Thank you for the input. I know the real answer is "see the motility doc and hope he can just magically fix things" but like, that's also too ideal. I just want to be able to eat enough, safely eat, and still like, do anything. I have withdrawn from all my friends, because I won't eat in front of them anymore, or with them, and that puts me in an awkward spot. I hate going to the restaurants and telling the server "nothing for me, not even a water."

 

[jadegreen]

So sorry this has been a struggle. Eating feels like a minefield when you have a GI disease. On the one hand, we have access in the U.S. to some of the best docs in the world, which is a gift, but on the other hand, our medical system is slow and burdened. We really don't have as many doctors as we need, so waits can be long. But hang in there, and have hope. Just go see the doc, that's a form of showing yourself some love, even it if doesn't solve 100% of your problems. Bowel motility is not a joke. I myself have low bowel motility, and it's not really fun.

Sometimes it can take a while to find the right doctor, and I think the second GI doc you saw was really trying to do the best she could for you by suggesting other docs and tests. There are things that some docs simply can't do for us, but we keep trying. I'm still looking for a good GI doc since I moved a year and a half ago, and it's frustrating, but we can't quit. Gotta keep up the good fight.

 

[ARSalerno3]

@jadegreen

So I did meet with my new GI doc's personal dietician and she noticed some issues, none of which are food related, she thinks I have lupus, which is news to me. She says my symptoms are all over the place and not episodic but more like "long period of time being sick" then a "long period of time being ok" so she requested an ANA test for me. The doctor refused to issue it and said "we'll just do it in May" and I was then told by the dietician to request one from my regular doctor, who interestingly refused. He asked why, and I told him why, and I wasn't really kind about it because I don't feel the need to be kind anymore.

There is a huge degree of irony here, because I hear the ANA is a blood test, and I do not do well with them, and my regular doc, every single, every single time I go to visit, the nurses try to draw blood on me and I very kindly tell them "no." So I don't get why he won't give it now when I'm LITERALLY giving him the thing he keeps asking for. Like they wanted to prick my finger for some test the last time and I was like "not going to happen." This is the same office where the nurse then took my blood pressure and asked why it was so high and I was like "oh I don't know" even though the real answer is "stop asking me for blood, I have an hour drive and don't feel like fainting and puking up my breakfast, like every single time we do a blood test."

So that's where I'm at. Unlike Crohn's, lupus apparently has a definitive test, or at least, autoimmune diseases are detected in that, so that's nice. Of the 3 doctors I've seen, one said Crohn's, one said "I don't know what you have" and the other said "high likelihood of Crohn's" but now that she got the report from the dietician, she's like "lupus maybe." I only saw the new doc for maybe 20 minutes, she at least let me go over my history, but the dietician met with me for an hour and a half, I was like blown away, she said all my other issues aren't age related, like my eye pain, my wrists and ankles being busted, in conjunction with the fevers, mouth ulcers, but then dizziness, chills, AND THEN GI issues.

Though part of me, legitimately, part of me is beginning to consider that I am just crazy. My therapist says she can't do anymore, because these problems are medical, like real actual doctor problems, but then I tell her they don't listen, she gets frustrated and near blames me for either not being mean enough or too submissive to the doctors. To be fair, of the 10 years I've seen her, I've spent 7 of them extremely sick so she's seen me at my worse, like when I dropped from 130lbs down to 119lbs when I first got sick, dropped literally in a month. Though my psychiatrist said the same thing, these are not mental problems, they are real ones and real doctors need to be involved. But I don't know...really starting to think I am crazy. If not that, I am ASSUREDLY cursed. By like, a witch or something. Clearly I wronged someone in like 1st grade and now it's coming back on me lol.

Thanks for the comment, sorry my reply was so dreadfully long.

 

[jadegreen]

It's all good, you're allowed to vent. Well, sometimes it can take time to find the right therapist. Trying to find someone who can help you learn the skills to cope better with your phobia may be the best route. Ask around, call people, ask if they can teach you some skills in a timeframe of 3-6 months--something like cognitive behavior and exposure therapy. I realize fixes aren't always automatic, but surely someone must have hit on the right ideas for this issue. My dad use to faint from blood draws, but as he ages, he has to get them more often. He hates them, but he doesn't faint anymore, so there's hope for you too.

I'm glad the dietician was listening to you better, and had some ideas. Sometimes these non-doctor personalities are more curious about the ins and outs of people's health problems then many doctors.

It's really weird that no one will order that test for you. I find that if I insist on just ruling something out "for my peace of mind" a doc will go ahead and do it, esp if it's so cheap and non-invasive. I looked up the cost for the ANA test on healthcare blue book, and it should be somewhere between $20 and $50. No big deal.

Who knows if you are cursed or not? However, some docs are really just not good at what they do. I recently had to leave a PCP practice because a doc refused to talk to me about a medication she prescribed to me without discussing risks and benefits with me first. Isn't that her job? (HINT: yes, that's her job).

 

[my little penguin]

Can you get a referral to a rheumatologist?
A different one from last time
Ana is a good test
But a rheumatologist may see the big picture and get more value in testing multiple rheumatological diseases on one blood draw
Since blood draws are not something you want done .
Fingers crossed you can get testing ordered

 

[ARSalerno3]

I did actually get a hold of my PCP and he did finally order the test, and he asked me to call the labs and find one around my area to find one with a dentist style chair. He said laying down makes it way easier. He also said bring some cold water and a small snack to eat when I'm done. He said to inform the nurses ahead of time, given the last time I fainted for a long time. I do have to go to my doctor though, he said he wants to see me because he said this is the first he's hearing about the eye pain and other problems, which I said "I was just assuming there were age related."

I have been informed that we humans are not supposed to be in constant pain, which this is actually news to me.

@my little penguin With regards to the rheumatologist, I did try to schedule, I don't need a referral, they have nothing like...for a year, but my regular doc did order multiple autoimmune disease tests, he said he's going to look them over with the dean of medicine at their place (the current dean used to be my PCP for like 10 years, so he knows me). I will admit, I am afraid of the test, and I'm not thrilled with having to go down to the South Side to get seen but that's the best I can do really. I just hate having to call off work to go do it. It's the most gonzo thing, my doctor's office won't schedule more than 4 days in advance, and they are always amazed that I don't walk to the place, and I go "no, I'm 18 miles away, an hour drive, I come here because the doctors are good."

@jadegreen I've had a lot of doctors over the years like that, I've come to realize some people are genuinely bad at their jobs, even though they're fully "trained." Those people tend to either only be in it for the money, or tend to have some personal issue they aren't working through, in my opinion.

 

[jadegreen]

I did actually get a hold of my PCP and he did finally order the test, and he asked me to call the labs and find one around my area to find one with a dentist style chair. He said laying down makes it way easier. He also said bring some cold water and a small snack to eat when I'm done. He said to inform the nurses ahead of time, given the last time I fainted for a long time. I do have to go to my doctor though, he said he wants to see me because he said this is the first he's hearing about the eye pain and other problems, which I said "I was just assuming there were age related."

I have been informed that we humans are not supposed to be in constant pain, which this is actually news to me.

@my little penguin With regards to the rheumatologist, I did try to schedule, I don't need a referral, they have nothing like...for a year, but my regular doc did order multiple autoimmune disease tests, he said he's going to look them over with the dean of medicine at their place (the current dean used to be my PCP for like 10 years, so he knows me). I will admit, I am afraid of the test, and I'm not thrilled with having to go down to the South Side to get seen but that's the best I can do really. I just hate having to call off work to go do it. It's the most gonzo thing, my doctor's office won't schedule more than 4 days in advance, and they are always amazed that I don't walk to the place, and I go "no, I'm 18 miles away, an hour drive, I come here because the doctors are good."

@jadegreen I've had a lot of doctors over the years like that, I've come to realize some people are genuinely bad at their jobs, even though they're fully "trained." Those people tend to either only be in it for the money, or tend to have some personal issue they aren't working through, in my opinion.

Yes, that constant pain thing! That was me once, "Oh, I'm NOT supposed to feel all my food moving through my body all day? Oh, I'm NOT supposed to have back pain from my childhood up? Oh....." I wish I could say all my pain was gone, today is a "not so good" day for me, but...at least I have some answers and can work on things as I'm able.

But this all sounds like good news! It's annoying to have to go so far, I know I'm always trying to avoid driving a long way, but, alas, such is the way of the world.

And I totally agree, some people get into medicine for the wrong reasons. We really need more good docs in this world!

 

[ARSalerno3]

@jadegreen

All I know is my therapist is hoping it's a definitive Crohn's diagnosis since it can be treated (so she says) but she's far more worried about a lupus diagnosis, which see says has no outcomes, so that's fun. My test is next Friday, the 8th, so that'll be a hoot. The whole situation has been genuinely tired and fed up with medical professionals. Like, I've had to see a dentist for a few months now, because my regular one just stopped accepting my insurance and while I initially found a replacement, I went in for just the intake, they took an hour, and still didn't see me, and I had like, a life, so I just left. Also, check this out, at the door to that dentist it said "No patient restrooms. Please use the bathroom before entering." That sign SCARED me half to death, I almost ran away.

Imagine having the gall to say that to people with GI issues and then making them wait a full hour before you even can schedule a cleaning. So needless to say, anyone with an MD at the end of their name is someone I def don't want to see or even hear.

 

[Scipio]

@jadegreen

All I know is my therapist is hoping it's a definitive Crohn's diagnosis since it can be treated (so she says) but she's far more worried about a lupus diagnosis, which see says has no outcomes, so that's fun.

I'm not sure what your therapist means by that. Crohn's and lupus are different diseases, but they are similar in that they are both incurable but both can be "managed" to reduce and control symptoms and reduce the risk of long-term damage. They are also similar in that both involve an over-active immune system and/or an excessive or inappropriate immune response that results in damage to healthy tissue.

 

[ARSalerno3]

@Scipio

Yeah, it sounds like she's super not liking the potential of lupus, which I mean, I'm not thrilled with either but I've not been thrilled with anything since like 2012 so lol. Both are autoimmune diseases if I remember correctly, but I think Crohn's is classified weird, like in IBD, which are themselves autoimmune, but like a sub-set. So yeah, I'm just tired of all the mystery and worry. I kinda stopped caring after the specialist blew me off.