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Crohn's Disease Forum » Support Forum » So confuzzled.. what the heck is going on!?!?


05-08-2012, 10:20 PM   #1
Leebie3
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So confuzzled.. what the heck is going on!?!?

had my follow up appt with the GI today and he said there's nothing wrong with me.. WTF!?

He said that given my faecal calprotectin was negative he would be VERY surprised if it's crohns.

so I asked why the CTE had shown inflammation and reactive lymph nodes then and he said the scans can be wrong, it was possibly just an ?artefact?.

He said we'll do the colonoscopy to which I advised I have already got appt with public system for monday for that so he's written a letter to add a gastroscopy as well.

Then he said there is something in the small bowel but he thinks it might be a stricture.. he said the CTE report said there is a narrowing (umm NOWHERE on the report does it say that.. it says NO sign of obstruction or stenosis!) so we will do a pill cam after the scopes show nothing (so he must be pretty confident they won't) then went on to say that although the pillcam can be dangerous if it gets stuck at the stricture it might be good if it does because they can "whip me into surgery and take the stricture out at the same time as the cam.. done and dusted. problem solved" WTF!?!?

He said he's a little confused why I am anemic (I don't have a functioning uterus so not from that) and said we need to see what's going on in the small bowel.

so what is going on?? The report said there is inflammation and enlarged reactive nodes consistent with inflammation but GI saying no inflammation.

report says no sign of obstruction or stenosis but doc says he thinks there is a stricture.

HUH!?!? I am so confused and have no idea what to think.

oh, and I asked why I am in so much pain and having bleeding and the runs etc then.. he said "I don't know" and shrugged his shoulders!

This is THE best gastrologist in the city!
05-08-2012, 10:39 PM   #2
kiny
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because they can "whip me into surgery and take the stricture out at the same time as the cam.. done and dusted. problem solved" WTF!?!?
I would get another doc if he actually said that, that's insane.

There is no way, no how that anyone should ever do a pill cam if there's the potential of it getting stuck, that's why there is a pre-cam that dissolves, not to mention the companies that make them (philips etc) forbid the use of their cams if they can get stuck.
05-08-2012, 10:48 PM   #3
tots
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Leebie3=
I am so sorry you are having this trouble! It is so difficult as it is without the
Drs making it harder.

I hope the best for you!

Lauren
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05-09-2012, 12:05 AM   #4
archie
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That all sounds very confusing, he sounds like his mind was maybe on other things. At least you've the scopes to go so maybe that'll shed some light if not definitely get a 2nd opinion loads of people do
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05-09-2012, 12:36 AM   #5
Jennifer
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I'm gonna try tagging some people from that sort of general area and maybe they might have some other GI docs that you may be able to see. Tonim, pjmel, Lulu, and Dusty, do you know of any good GI docs in your area or someone that Leebie3 might be able to see? Thank you!
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Diagnosis: Crohn's in 1991 at age 9
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Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
05-09-2012, 06:45 AM   #6
DustyKat
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Thanks Crabby!

Leebie is a fair way away from me in another state. Maybe ask in the Queensland Local Support Group???

Now, if you ever come down to NSW then I can surely give you the names of some fab GI's and surgeons.

Dusty. xxx
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05-09-2012, 07:21 AM   #7
Lisa
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I would be asking him if he was reading the right chart!!!!!!.....wtf is right - something definitely sounds OFF!

Hope you have some afindings from your scopes - and agree maybe time to find a different doc for another opinion!
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05-09-2012, 11:03 AM   #8
Gculk
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I would get a second opinion before doing anything of import with this fellow. He sounds absolutely bonkers. By saying take the pill cam and get an obstruction he's gambling with your health. By not being consistent between reports and what he's telling you, he's being careless.

Just because he's the 'best' in the city doesn't mean he's not human. One of the people here saw someone who wrote a book on IBD, and got a wrong diagnosis.

Best of luck
Nathan
05-09-2012, 01:53 PM   #9
Jennifer
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I know my GI worked 4 hours away. We went that far because he was the best (and probably still is). If you're able to travel (have someone else take you even) then it'd be a great benefit to you.
05-09-2012, 05:50 PM   #10
Leebie3
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thanks guys.. you rock :-)..

so you really don't think I'm just crazy? It was my GP that called me and said yes, I do have an IBD not him so I guess I was wondering if he and I just got it wrong.. Is it possible the GI got a further report? but then why would he print the one I have out to give to the scopist so they do a gastroscopy as well.. oh...so confusing.
05-09-2012, 06:02 PM   #11
Catherine
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You need to get copies of everything in case you decide to get a second opinion. Are all GI in Darwin members of the one group?

How would it be possible for you to travel for second opinion?

Good luck with the scopes.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

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Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
05-09-2012, 06:06 PM   #12
Leebie3
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I have copies and I have the films and disc of the CTE. Darwin? no idea (I'm in Cairns) I *could* go to Brissy I expect but I really don't know that I am bad enough to warrant it. although I guess if I need to be in hospital for pain relief then I am bad enough for it to be affecting my life. without a diagnosis though I dare say they will stop admitting me. they awere already getting a bit nasty before the CTE showed inflammation. You saw the report that I typed out yeah?
05-09-2012, 06:09 PM   #13
Catherine
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I forgot where you were. Just put Cairn into my comment.
05-09-2012, 06:11 PM   #14
Catherine
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If there is more than one group of GI in Cairn, you would be best to get a second opinion from someone in a different group.

Are you feeling any better?
05-09-2012, 06:16 PM   #15
Leebie3
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no, no better.. If I wasn't having the scopes on monday I'd prob be in hosp.. eating makes it hurt more. lots of mucus farts lol fissures bleeding. getting more anaemic. although I'm liking the weight loss :-D
I just can't believe that there is nothing wrong. My pain is consistent with where they saw the inflammation on CTE (ileum)
05-11-2012, 03:13 AM   #16
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Leebie3, I see a GI at the Townsville General Hospital, she is very good. I will PM you with her details.
05-11-2012, 03:57 AM   #17
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Leebie
How are you doing today?
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05-11-2012, 04:20 AM   #18
Leebie3
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thanks for asking kip :-)

Had my pre-admit for scopes on monday today and the nurse is just as confused as I am! He said I'm having both scopes so just wait and see what they find.. they have written on the referral letter that I'm to have numerous biopsies and I voiced my fears re pain during the scope and he said the doctor that will be doing it pretty much leaves the sedation up to the nurses.. if they think I need more they can give me more ;-)
05-11-2012, 04:48 AM   #19
Kip1
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Cant believe the the bother you have had with this doc. It is no wonder you have no confidence in a doc that cannot read whats in front of him in black & white.

My own GP said that it was only a clinical diagnosis that I have so may not have crohns (that was yesterday) so I pointed out that I did have a colonoscopy in november & they spotted the crohns then & the surgeon even brought some students in to take a look at what crohns looks like.
Apparently the GP is ignoring this report & is now saying the clinical report doesnt count.
Just felt ???????
My gp is usually pretty good too so I was like you WTF!!!!
Definitly make sure you do get some pain relief. As you are in so much pain now you will definitly need it even though they try to avoid you getting it so the proceedure runs much quicker.
05-11-2012, 05:05 AM   #20
Leebie3
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that is SO wrong kip :-( WTF is wrong that they can't read?? seriously? I know they're fallible but this our LIVES they're messing with!

yeah, will need max sedation. the last colonoscopy I had they maxed me out and i STILL was in so much pain I was apparently pushing the doc away so they ended up giving me more sedation than they're usually happy to give just to knock me out..
05-11-2012, 02:32 PM   #21
Jennifer
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If you have it done at a hospital than you could be put to sleep rather than being given Versed and some relaxer before the procedure. They usually do this with people that don't respond well to regular sedation.
05-19-2012, 10:42 AM   #22
tonim
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Hi Leebie, Sorry i have been off the air for a little while. I am in Townsville & have a fantastic GI through the public Townsville Hopsital. My sister in law also has crohns and her GI is private, here in Townsville. So let me know if you would like the details of either of these. I have recently had to have surgery, so also know of a fantastic surgeon here in Townsville.
It is very hard to cope with what you are going through, when you have doctors who seem to not know which end is up... It does not instill confidence that things will get better for you. I have been very fortunate, that I have always had this, and you should too, so please dont settle with what they are putting you through.
Take care and please get in touch if you need anything, even if it is just to chat. I am only a few hours away.
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