I have lost all faith and trust in doctors

[Lesley_x]

Hi guys just wanted to rant as I'm quite distressed by this situation.

I can't get my head round my most recent visit to my GI. My faith in the medical profession was getting shaky but now it's at an all time low, especially after a weekend spent in hospital for severe abdominal pain!

I've been under investigation for inflammatory bowel disease. My recent faecal calprotectin tests which indicate inflammation in the bowel have been consistently high for months. I have had 3 results be positive and each one worse than the last, correlating beautifully with my steroid dosage.

When I got really sick (nocturnal diarrhoea, bleeding, night sweats) my ESR jumped from 30 where it has been for years to 51. My rheumatologist took one look at me, said I did not look well and gave me a steroid injection. My subsequent ESR was 2!! After this and some prednisolone I returned to a quality of life I never thought was going to be possible for me, sleeping through the night and able to eat without pain. Also went from going to the toilet 12 times a day to 'normal'.

Every time I have tried to get off the steroids I get sick again.

Most recently I ended up in severe pain and was admitted for pain relief. My blood pressure was 150/100 and my pulse 140 to give you an idea of the level of pain.

So with all this in mind, imagine my horror when my GI says I am only feeling better because of the feeling of well being steroids give you I.e. it's all in my head and all my high calprotectin results are nothing but false positives. His solution to my problem was to have someone come give me morphine when needed. I'm a 25 year old trying to live my life, this is not an acceptable solution to me!

Why do a calprotectin test and repeat it if you're just going to ignore it?!

I am so frustrated and feel like giving up with all these doctors. Whats the use if when you find something that works theyre not going to believe you anyway? Or when tests come back positive they don't act on it?

I am so depressed about this and don't know what to do. I am already seeking out a new GI but I know this crap will be in my medical records and that's not good.

[Carolina]

Get a second opinion.

Practice meditation and relaxation.

As Joe says, remember to keep breathing.

Do they do an MRI when you have the pain?  Or maybe it's a CT scan.  I can't remember.

I had an idiopathic (of unknown origin) bowel blockage in 2010.  My bowel was completely stopped.

The pain was unbeieveable.  They kept me in the hospital until either the blockage cleared itself or they would do surgery.

It cleared.  I was in the hospital for three days.  I'm so sorry for your pain Lesley.

The only thing I can say it that bowel and abdominal things are wicked hard to diagnose and treat.

Gastro-intestinal problems go with Sjogren's.   I'm sorry they can't do more for you.

Have they tried antibiotics?  I imagine.

I have no clue. 

Do keep us posted.  And RANT AWAY.

Sometimes that's all we can do, and then try meditation and relaxation again.

Hugs

Elaine

[Styx]

Why is he arguing that you do not have IBD? Are there any negative reports or is he just guessing? Have you had a colonoscopy?

It's probably time for a new GI regardless though. If he's not at least suspicious of IBD, that's concerning.

Styx

[slccom]

You are in England, aren't you? What a jerk!
Hugs, Sharon

[irish]

When a person has a high blood level, 12 stools a day and terrible pain----duh, seems like it isn't in the head. Does the doctor realize that when one has ulcerative colitis or one of the autoimmune inflammatory diseases the sed rate will go down with steroids. Find a new doc ASAP. With all this documentation it would seem that there should be some level headed doc around who could care of you. I swear some of these docs do stick there head where the sun doesn't shine and leave it there. No possible chance for education in the dark. Good luck. Irish

[Tivia]

I dont understand what kind of caveman medical profession you have there, but wow. If they did a colonoscopy they can see the ulcers or inflammation. If they did a small bowel series they can see any narrowing inflammation strictures. When they do mine even when I think I am in remission and feeling fine they tell me there is still some areas of ulceration. So if you are having major symptoms that should be visible wth are they looking at?? your feet. Get thee to a new gastroenterologist pronto! You need a colonoscopy 

[drylady]

Hi Lesley. I can relate with having gi issues and not getting many answers. I don't know your insurance situation but a new gi doctor may have answers. Also with doctors I've learned you may have to be really " assertive" and please know you have every right to ask questions.  Do you bring anyone with you to medical appointments? I have done that and the docs seem more receptive when you have someone with you. Keep pushing. 

[jazzlover]

How awful!! I hope you can find a new Dr .. one with a brain... soon!! 

[Winnie]

Lesley-x
I ditto all the good advice that you have been given.  You also may want to google IBD forums and see if you can get more support with the tummy.  I look occasionally at different forums to get suggestions.  It can be very helpful.  Don't give up, sunny days will come soon.

Winnie

[Reanne]

I agree with what the others have posted.  The doctor thinks you can lower your sed rate by "thinking the steroids helped?"  That is crazy.  I have a friend who has had stomach issues several months, finally they did a procedure and found out she has Ellison disease.  The local doctors that because she was an older single lady she just wanted attention and feigned illness to get it.  Hang in there!!  Find a better GI doc.

[SjoGirl]

Oh GI docs I have similar problems with mine telling me I probably have IBS when I was sure it was the medication he was giving me causing issues. I slowed down then stopped the med after a terrible episode and found thing cleared up some. I had to go back on the med as symptoms, terrible acid, returned, buy I'm taking much less medication than he is prescribing (many docs don't take one's height, weight and body composition into account and most meds are dosed for the average size man). I'm working with my PCP to go to a new GI doc. Good luck.

[Lesley_x]

Thanks for all your replies, I feel a little better having ranted on here

Carolina - I have been doing the GI rounds this year. I went to see one last November and I'm kicking myself for not fighting to see him on the NHS (I saw him privately for speed). He said I have inflammatory bowel disease but they couldn't say where and referred me for an MR enteroclysis, which I'm going for on Tuesday, a little too late as they lost my original referral. He said it's probably in my small bowel but as I've been treated with pred before investigation, there is the possibility of false negatives.

I then recently went to see another GI who thinks I have pancreatic insufficiency due to sjogren's and is starting me on Creon to see if it works. He is also scanning me for mesenteric vasculitis. He also wrote Crohn's? on his notes so he is thinking it too.

litliwlowa - They keep an eye on my liver. It's normal at the moment and does stabilise when I am medicated (on steroids at the moment). I asked the same GI what the liver disease WAS as he has never given me a name and he just waffled and said it's normal at the moment. I am AMA positive so it's likely to be PBC but no one will define it for me, so frustrating.

My BP is normal otherwise. On the Sunday before discharge when the pain had finally gone, it was 120/80 on the dot, a perfect blood pressure. I can be a little tachy on the steroids though.

My rheumatologist subtly hinted to me that my GI wasn't interested and wasn't communicating with him so I went to see another one. My rheumatologist has been an absolute lifesaver and I would still be glued to my couch unwell if it wasn't for him, he has given me the best year of my life by putting me on steroids.

Styx - I had a negative colonoscopy, but done on steroids. The GI who did it said it could be a false negative but unlikely. He also said my calprotectin levels indicate the crohn's would be in my small bowel rather than my colon anyway. I'm going for a small bowel scan on Tuesday.

What I cannot understand is that this GI (the one I am moaning about) at a previous appointment looked me square in the eye and told me there was inflammation in my bowel and it would probably be best treated with azathioprine and it was probably in my small bowel which is why it didn't show up on colonoscopy. My symptoms fit better with small bowel pathology anyway. So I can't understand what's changed between that appointment and this one. I am disappointed as I really trusted this guy.

[Styx]

Styx - I had a negative colonoscopy, but done on steroids. The GI who did it said it could be a false negative but unlikely. He also said my calprotectin levels indicate the crohn's would be in my small bowel rather than my colon anyway. I'm going for a small bowel scan on Tuesday.

I'm not familiar with the data on either of the things you just mentioned, but anecdotally, I've had a false-negative colonoscopy on azathioprine.

What I cannot understand is that this GI (the one I am moaning about) at a previous appointment looked me square in the eye and told me there was inflammation in my bowel and it would probably be best treated with azathioprine and it was probably in my small bowel which is why it didn't show up on colonoscopy. My symptoms fit better with small bowel pathology anyway. So I can't understand what's changed between that appointment and this one. I am disappointed as I really trusted this guy.

I've had some doctors yell at me during one appointment (because, you know, I piss lots of them off ;-) ), and then I'll go see them a few months later, and they'll have completely forgotten about their own rage towards me. I feel like some of my physicians are effectively schizophrenic.

He may not even remember what he said previously. Maybe you can gently remind him.

Styx

[Momedic]

I lucked out by finding my primary doc! His nurse actually has SJS!  She has been given the OK by the clinic to take a nap during the day just so she can cope with working the entire day!  I think this is fantastic! So, I am fortunate that he completely understands how Sjogren's can cause fatigue and so much more! I pray you find another doc that you can trust... hard as that is and can be!  They are out there... just very difficult to find!

[Lesley_x]

Styx - I had a negative colonoscopy, but done on steroids. The GI who did it said it could be a false negative but unlikely. He also said my calprotectin levels indicate the crohn's would be in my small bowel rather than my colon anyway. I'm going for a small bowel scan on Tuesday.

I'm not familiar with the data on either of the things you just mentioned, but anecdotally, I've had a false-negative colonoscopy on azathioprine.

What I cannot understand is that this GI (the one I am moaning about) at a previous appointment looked me square in the eye and told me there was inflammation in my bowel and it would probably be best treated with azathioprine and it was probably in my small bowel which is why it didn't show up on colonoscopy. My symptoms fit better with small bowel pathology anyway. So I can't understand what's changed between that appointment and this one. I am disappointed as I really trusted this guy.

I've had some doctors yell at me during one appointment (because, you know, I piss lots of them off ;-) ), and then I'll go see them a few months later, and they'll have completely forgotten about their own rage towards me. I feel like some of my physicians are effectively schizophrenic.

He may not even remember what he said previously. Maybe you can gently remind him.

Styx

I see him again a week on Tuesday for my scan results and I've decided I'm not going to take any of his bs. I've read up so much on what this raised faecal calprotectin means that I am well prepared to debate with him what it means. And it most certainly is not bowel spasm! It just shouldn't have to be like this, it's their job, and I don't think I should be doing it for him!!

My results have come back raised again so he can't really be saying it's false positives when that's 3 been raised over the course of around 10 months.

Disappointing to say the least. I can't understand what his motivation would be for ignoring test results. Is it because he would need to admit his previous diagnosis was wrong?!

I lucked out by finding my primary doc! His nurse actually has SJS!  She has been given the OK by the clinic to take a nap during the day just so she can cope with working the entire day!  I think this is fantastic! So, I am fortunate that he completely understands how Sjogren's can cause fatigue and so much more! I pray you find another doc that you can trust... hard as that is and can be!  They are out there... just very difficult to find!

That's incredible! Imagine being able to take a nap during the day, I would love that. I am so lucky to have a great rheumatologist who has invested a lot of time in me and adjusting my steroid dose. He really did give me the best year of my life and I'll be forever grateful to him for that, he gave me a quality of life I never knew was possible for me! So to have my GI turn round and say it's all in my head is frustrating beyond belief.