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Crohn's Disease Forum » General IBD Discussion » What would you think?


11-18-2013, 12:27 PM   #1
lsgs
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What would you think?

Having just had an extremely frustrating gastro appointment which I wish I had never gone to, I wanted you guys opinions on what my clinical picture now is...

1) High calprotectin
2) Intermittently raised liver enzymes and positive AMA
3) Recurrent cholecystitis
4) High ESR
5) Folate deficiency

-Diarrhoea 15 times a day with undigested food, mucus and blood
-Weight loss requiring hospitalisation
-Responds to steroids (proven by calprotectin and blood results varying with steroid dose)

Clear scopes conducted while on steroids, but no small bowel MRI as of yet.

I can't seem to get a gastro to take me seriously and I can't understand why. Other doctors do, but the gastros seem confused and don't want to see me.
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Sjogren's syndrome - 2009

Presumed IBD - 2012

Cholecystectomy, liver biopsy and lymph node excision - 2015

Primary Biliary Cholangitis - 2016

Bile Reflux Gastritis - 2016
11-18-2013, 12:43 PM   #2
belovednokie
 
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I am so sorry that you have to go through this, what are the doctors explanation for your test results?

I hear things like this happen all the time, this is one thing that actually worries me. From my understanding if you want certain tests done they can not tell you no, they have to do them. I had to do the same thing, I wanted them to do a colonoscopy, my doctor didnt want to do one untill my blood work came back. I insisted, so they did a sigmoidoscopy, thats how they found the proctitis, which was good because it did not come up in the blood work. They tested for inflammation and blood in my stool, test results came back normal but when they went in thats exactly what they found.
11-18-2013, 01:15 PM   #3
mish2575
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All those pieces together should have the doctor's attention. SMH

Have you tried switching GI's?
11-18-2013, 02:03 PM   #4
Essieluv
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Clearly, something is going on in your body to cause those symptoms. If your doc won't work with you, maybe you should switch to a new one? A good GI is hard to find, but once you do it's really helpful!
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11-18-2013, 03:41 PM   #5
fozheart
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Sounds like he is afraid to treat you because of the autoimmune problems? Maybe that is what he attributes the high ESR and ANA to. Do you have a rheumatologist? You need to find a GI doctor that listens! Seems silly to do a colonoscopy while you are on steroids!
11-19-2013, 11:10 AM   #6
UnXmas
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Your post interested me, as I get taken seriously by all my doctors (currently my surgeon and urologist, and GP; I used to see a neurologist and a rheumatologist, who also always took me seriously) but I have seen several gastroenterologists but never gone back because they just don't believe me - even after I was diagnosed. They now say that my test results do not correlate with the severity of my symptoms - that I shouldn't feel as sick as I do (and therefor it must be all in my head, caused by stress, my weight loss is due to an eating disorder, blah blah blah).

I take it you're undiagnosed? Who prescribed the steroids, and were they to treat IBD?

I'd always assumed it was my low weight that really got to gastroenterologists. They seem to rely a lot of test results - scopes in particular - and don't seem to care much about the actual symptoms I report.

What did your gastro say? That he doesn't think you have Crohn's, or that he doesn't think you need to see a gastro at all?

I don't know about your test results, but that much diarrhoea with blood cannot possibly be something a gastroenterologist should be dismissing. I guess it's possible your doctor views your weight loss the same way mine has been viewed by some doctors - perhaps he suspects you have an eating disorder. But I cannot see how he'd not see the diarrhoea and blood as something that doesn't need urgent treatment, except that it's a symptom you're reporting rather than something he's actually seen for himself. Do you think he doesn't care about it because he doesn't actually believe it's as bad as you say?

I know this seems horrible, that I view doctors with such suspicion, but in my experience, there are doctors who you need to be suspicious of. You clearly are reporting to your gastro symptoms that show you are very unwell and in need of a gastroenterologist's medical expertise. Either the gastro is a complete idiot and doesn't realise this (unlikely), or he doesn't believe what you are reporting to him and is instead basing his opinion on the clear scopes.

I know how tough it is to be treated this way by doctors. I found that if a doctor is not taking me seriously, trying to get him to change his mind is usually a lost cause. You shouldn't have to work at making a doctor take you seriously - that's not how doctor-patient relationships work. You need trust and good communication. Even if that means going through dozens of doctors until you find a good one.
11-19-2013, 08:28 PM   #7
fozheart
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I am wondering, did this GI dismiss you, saying that there is nothing wrong, it did he say that maybe the cause was from something else? How can he blow you off with a high sed rate and inflammation of your gallbladder?!!! And UnXmas, your GI's are not any better? So unfair! I am wondering, Isgs, if you are on an immunosuppresive drug, seeing that your liver enzymes are up and your folate levels are low.
11-20-2013, 04:23 AM   #8
lsgs
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I am so sorry that you have to go through this, what are the doctors explanation for your test results?
The GI's offer no explanation at all or they blame it on my other autoimmune disease which categorically does not cause these symptoms. Sjogren's actually tends to cause constipation due to lack of mucus and I can say for sure I am not having that problem! My appointment on Monday, he was dismissive and rude and did not explain or acknowledge any of the problems I'm having really.

All those pieces together should have the doctor's attention. SMH

Have you tried switching GI's?
I just switched GI because my previous one couldn't get to the bottom of it and called a psychiatrist and despite a clean bill of health from a psychologist who wrote to him, he still said my response to steroids was 'a feeling of wellbeing' and psychological (ignoring my vast improvement in blood results and FCP), and my 3 high calprotectin readings taken over a year were all false positives! This is when a few months prior he told me there was definitely inflammation in my bowel and he wanted me on azathioprine, then he changed his mind again. So this new one is just as bad really. He told me I had IBD he just didn't know where when I saw him privately last year.

Clearly, something is going on in your body to cause those symptoms. If your doc won't work with you, maybe you should switch to a new one? A good GI is hard to find, but once you do it's really helpful!
This was my new one! When I saw this guy privately he said, you've got IBD, I just don't know where. The trouble is I've seen 3 GI's in the past 6 years and they are beginning to use that against me and imply hypochondria, or certainly the GI on Monday did that. Said I'd seen too many doctors, there was too much input and this really irritated him tbh!

Sounds like he is afraid to treat you because of the autoimmune problems? Maybe that is what he attributes the high ESR and ANA to. Do you have a rheumatologist? You need to find a GI doctor that listens! Seems silly to do a colonoscopy while you are on steroids!
I have a wonderful rheumatologist who is willing to treat me for IBD even though it's not his specialty. If I want to go on azathioprine I've just to call him, but I'm trying LDN first. He says I have IBD, but he can't diagnose it cause it's not his specialty. And without a diagnosis, nobody takes you seriously really. I do have positive ANA (for autoimmune disease probably due to sjogren's) but the one no one has dealt with is the +ve AMA which is an antibody against the liver and normally indicated a condition called primary biliary cirrhosis and my rheumatologist again, off the record, said that's what is probably is but he can't diagnose it. These antibodies attack the bile ducts and now I'm getting cholecystitis... Coincidence?

Your post interested me, as I get taken seriously by all my doctors (currently my surgeon and urologist, and GP; I used to see a neurologist and a rheumatologist, who also always took me seriously) but I have seen several gastroenterologists but never gone back because they just don't believe me - even after I was diagnosed. They now say that my test results do not correlate with the severity of my symptoms - that I shouldn't feel as sick as I do (and therefor it must be all in my head, caused by stress, my weight loss is due to an eating disorder, blah blah blah).

I take it you're undiagnosed? Who prescribed the steroids, and were they to treat IBD?

I'd always assumed it was my low weight that really got to gastroenterologists. They seem to rely a lot of test results - scopes in particular - and don't seem to care much about the actual symptoms I report.

What did your gastro say? That he doesn't think you have Crohn's, or that he doesn't think you need to see a gastro at all?

I don't know about your test results, but that much diarrhoea with blood cannot possibly be something a gastroenterologist should be dismissing. I guess it's possible your doctor views your weight loss the same way mine has been viewed by some doctors - perhaps he suspects you have an eating disorder. But I cannot see how he'd not see the diarrhoea and blood as something that doesn't need urgent treatment, except that it's a symptom you're reporting rather than something he's actually seen for himself. Do you think he doesn't care about it because he doesn't actually believe it's as bad as you say?

I know this seems horrible, that I view doctors with such suspicion, but in my experience, there are doctors who you need to be suspicious of. You clearly are reporting to your gastro symptoms that show you are very unwell and in need of a gastroenterologist's medical expertise. Either the gastro is a complete idiot and doesn't realise this (unlikely), or he doesn't believe what you are reporting to him and is instead basing his opinion on the clear scopes.

I know how tough it is to be treated this way by doctors. I found that if a doctor is not taking me seriously, trying to get him to change his mind is usually a lost cause. You shouldn't have to work at making a doctor take you seriously - that's not how doctor-patient relationships work. You need trust and good communication. Even if that means going through dozens of doctors until you find a good one.
I totally get it. My trust in doctors is pretty much shot. The trouble is I've seen 3 GI's in 6 years and they are now saying I am seeing too many doctors and having too much input? My concern is that, even though I have a clean bill of health psychologically, they will revert back to the anxious/hypochondria/young woman thing if I start doctor hopping to find a decent one. It sounds like my GP is going to do this for me though!

The irony is the GI conducted the scopes while on 50mg of steroids (and an 80mg kenalog injection that would still have been working), took 2500 off me then sheepishly told me it could have been a false negative. Now, however, he does not acknowledge it could have been a false negative.

This GI hasn't seen my weight loss, my previous GI did and eventually I needed hospital admission I was losing weight so rapidly. My new GI has only seen me steroid chubby though! It was my rheumatologist who prescribed the steroids, he is willing to treat me for IBD but can't diagnose it. He will even prescribe me azathioprine, I just have to make the call.

To be honest I don't even know what this GI said, he's repeating the calprotectin then seeing me in 6 months which is not really satisfactory at all. He kind of just said mmhmm to everything I said, talked me down for questioning things and really got ripped into me and the doctor who prescribed me LDN. Felt about 2 inches tall by the end of the appointment.


I am wondering, did this GI dismiss you, saying that there is nothing wrong, it did he say that maybe the cause was from something else? How can he blow you off with a high sed rate and inflammation of your gallbladder?!!! And UnXmas, your GI's are not any better? So unfair! I am wondering, Isgs, if you are on an immunosuppresive drug, seeing that your liver enzymes are up and your folate levels are low.
He gave the impression he just doesn't know, and that really seems to irritate him?? That's the vibe I got from him. I don't think he's saying there's nothing wrong, just that he can't piece it all together into something meaningful. But he is taking that frustration out on me because he doesn't know how to answer my questions. I mean I had a really horrible cholecystitis episode a few weeks back and needed repeated buscopan and diclofenac injections to settle it (took about 2 weeks) and I told him that and he barely acknowledged it, just said there was too much going on and too much input. I was hoping he might investigate why it's happening since this is my third attack this year, one required hospitalisation!

I am not on a immunosuppressive drug at the moment, I'm taking LDN and my sed rate has come down quite a bit... I was on stupid doses of steroids for a year though.
11-21-2013, 05:37 AM   #9
UnXmas
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I totally get it. My trust in doctors is pretty much shot. The trouble is I've seen 3 GI's in 6 years and they are now saying I am seeing too many doctors and having too much input? My concern is that, even though I have a clean bill of health psychologically, they will revert back to the anxious/hypochondria/young woman thing if I start doctor hopping to find a decent one. It sounds like my GP is going to do this for me though!
Ugh, I've heard that before now too - "you're seeing too many doctors, you've had too many tests". But I have found that the doctors who do take me seriously, do not care how many doctors I've seen. It's the ones who wouldn't have taken me seriously anyway who pick up on the number of doctors as a sign of my hypochondria, attention seeking, or whatever other insulting mental disorders they come up with (which they seem to use interchangeably).

When they believe they've sussed a person out, doctors - perhaps like people in general - interpret everything so that it supports the view they've established. Seeing many different doctors is a sign of mental instability to one doctor, but to another doctor, it's the sign of a disease being difficult to diagnose.

I wouldn't go back to this GI if I were you. It sounds like he's a lost cause. He'd only change his mind if your health got so bad there was no way he could dismiss it, and you don't want to have to wait until that point. (That's what happened to me.)

How badly do you need an official IBD diagnosis - is your rheumatologist able to treat it adequately?
11-22-2013, 02:48 PM   #10
lsgs
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Ugh, I've heard that before now too - "you're seeing too many doctors, you've had too many tests". But I have found that the doctors who do take me seriously, do not care how many doctors I've seen. It's the ones who wouldn't have taken me seriously anyway who pick up on the number of doctors as a sign of my hypochondria, attention seeking, or whatever other insulting mental disorders they come up with (which they seem to use interchangeably).

When they believe they've sussed a person out, doctors - perhaps like people in general - interpret everything so that it supports the view they've established. Seeing many different doctors is a sign of mental instability to one doctor, but to another doctor, it's the sign of a disease being difficult to diagnose.

I wouldn't go back to this GI if I were you. It sounds like he's a lost cause. He'd only change his mind if your health got so bad there was no way he could dismiss it, and you don't want to have to wait until that point. (That's what happened to me.)

How badly do you need an official IBD diagnosis - is your rheumatologist able to treat it adequately?
Thanks for the reply

It's all become clear now why the GI was so obnoxious and snippy. I had a review with my LDN doctor and apparently my GI is seriously opposed to LDN as he prescribed it for one of the GI's patients, the patient got better, and the GI didn't like being shown up. The GI then responded by complaining and getting the GP (LDN doc) up in front of the health board, defence union, GMC etc. Got myself a great gastro there.

As you say, my last GI did nothing until my boss (a doctor) sent me to A&E and he had to then admit me, I was too sick by then to walk or stand for more than 30 seconds, passing out in the shower etc, rake thin. I guess I figure if I got a diagnosis I might get taken more seriously in that if I need help, doctors won't fob me off until I'm too sick to ignore (it's exhausting having to beg for help when you feel ill!) and I would get access to an IBD nurse who can be invaluable. I just want to be given a bit of respect and dignity and that's not going to happen without a label for the inflammation in my bowel. From a psychological point of view, to me it's always unresolved and I'm always searching for what is wrong. If I could make peace with it, I wouldn't care, but it's easier deal with something when you know what it is! Since I've started getting complications too, I've felt more like I need to know what it is to know what I'm dealing with.

My rheumatologist is a great guy and he seems sick of me not being taken seriously and seeing me suffer despite the clear evidence that there's inflammation in my bowel. He has certainly, quite clearly, voiced his opinion on the disinterest my gastro has shown. I think he has realised despite his efforts I'm getting nowhere with gastros, which is why he is willing to treat it. And I do trust him but it's not his field - it's putting pressure on him to treat something he is not confident in treating, and he is obviously not going to experienced in this. He said himself, he doesn't know how to monitor it. At the moment he is my only route to conventional drug treatment though and if LDN fails me he will treat me.

Anyway, I am hoping his letter is suitably pathetic and my GP will refer me elsewhere. I don't want to go back to see him, like you say.
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