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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Potential diagnosis help


12-07-2015, 11:16 AM   #1
GlasgowGirl86
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Potential diagnosis help

My story is I've had gastro issues since February. I've had a colonoscopy which showed previous inflammation in the colon but no active inflammation. Faecal calprotectin and blood results have been normal although these have always been done when I've been feeling a bit better. I've had numerous stool tests done to rule out infection and they've all come back negative. I recently got results from a small bowel MRI which shows inflammation in the small bowel particularly in the terminal ileum. I'm seeing a Gastro consultant on Wednesday. I'm just wondering if this is enough for the consultant to diagnose Crohn's or am I going to get fobbed off again saying I can't get any treatment because there's no definitive diagnosis?
Also I'm on 20mg omeprazole for acid reflux and indigestion but occasionally I'm still getting really bad epigastric pain and reflux so should I push for an upper GI endoscopy incase Crohn's is the culprit for that too?
12-07-2015, 03:54 PM   #2
Cat-a-Tonic
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Hi GlasgowGirl. I honestly couldn't say whether or not the small bowel inflammation will get you a diagnosis or not - it will depend on your consultant. Some doctors will only diagnose when they have definitive evidence (like if biopsies definitively show Crohn's). I would wager a guess that your consultant will likely send you for more tests to be sure. As you mentioned, an upper endoscopy would likely be a good idea. And a pill cam (also known as capsule endoscopy) might also be a good idea - it can visualize the entirety of the small intestine and could get a better look at your inflamed areas.

So, that would be my guess, that they'd likely want to do more tests to be thorough, before they put you on any medications for IBD. I'm not a doctor by any means though so that's just my guess! I wish you luck on Wednesday, please keep us posted on what happens. And I hope you do get a diagnosis soon and get on some good treatment so that you can feel better!
12-07-2015, 07:13 PM   #3
Lady Organic
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I think the new consultant will want to have a colonoscopy to see your terminal ileum.
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12-08-2015, 05:08 AM   #4
GlasgowGirl86
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They did have a look at my terminal ileum when I had my colonoscopy back in April and they found a tiny ulcer and not much else.
I'm hoping they give me something for the inflammation even if I don't get a diagnosis. I just want to start feeling better. Really struggling along with work at the moment.
12-08-2015, 09:48 AM   #5
Lady Organic
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April is long ago. They might want to corroborate the MRI with a new colonoscopy. colonoscopy is the best exam to visualize disease. good luck.
12-09-2015, 03:37 PM   #6
GlasgowGirl86
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Cat-a-Tonic you were spot on! No diagnosis yet. They want to do a pill cam and upper GI endoscopy plus a repeat faecal calprotectin. Although he did say the other consultant might not want to go ahead with the pill cam as there's possible thickening in the small bowel and the cam might get stuck 😁. So he may decide if it's too risky to start me on some treatment to see how I get on.
12-09-2015, 04:02 PM   #7
Cat-a-Tonic
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I'm sorry to hear that there's no diagnosis yet, but hopefully you will have one soon once these tests are done. As for the possibility of the pill cam getting stuck - they can do something called a patency capsule first to see if the pill cam is going to get stuck or not. The patency capsule is the same size & shape as the pill cam, so they have you swallow it and then if you think it might be stuck they can do x-rays to confirm. And if it does get stuck, it will dissolve and not cause an obstruction. So if there's any concern at all about the pill cam possibly getting stuck, then it's absolutely worth asking about the patency capsule.

Good luck with whatever ends up happening! Please keep us posted. I will think happy thoughts for you that you get a diagnosis and on some good treatment very soon!
12-09-2015, 05:07 PM   #8
GlasgowGirl86
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Thanks for the info on the patency capsule! I got told I would have to go for an operation if it got stuck but that seems like a much better option.
Still very frustrating being left feeling like crap with no treatment but the consultant was very sympathetic and put my referrals through as urgent so will hopefully only be a few weeks before things start happening.
12-16-2015, 05:57 PM   #9
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Hi I know the undiagnosis is so hard when something is seen. My specialists all want hard evidence (ie only from biopsies), which I havent had up to now. Luckily my GP couldnt bare to see me suffering so much so she started prescribing 5-ASA and that has turned me around.

Its great you're getting the upper GI and a pill cam to be extra sure. I had the patency capsule too. Please work on the consultant to get you on some sort of treatment if possible.
12-16-2015, 07:38 PM   #10
GlasgowGirl86
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You must have a better GP than me because mine refuses to start me on any treatment saying only the consultant can do that. I'm seeing my GP again tomorrow because I've started regurgitating my food :S so I shall pester again about treatment .
12-17-2015, 03:55 PM   #11
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Did you see your GP today?
I think mine is quite unusual to prescribe for IBD without a diagnosis. But I am getting probably the mildest drugs available and I am lucky that they help me.
You mentioned epigastric pain and reflux, has GERD been mentioned? I personally have no experience, but I know of it because so many members of this forum have it. Perhaps you can get more advice about reflux problems if you havent already.
And, are you taking your vitamin D? I had a discussion about it with my sister in law who lives in Glasgow. She said there are no recommendations for the general population to take vitamin D supplements. Strange that it is monitored here in NL but not there where it is even darker during the winter months.
12-18-2015, 02:33 AM   #12
GlasgowGirl86
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I did go to the GP yesterday who sent me to the hospital because my temperature and heart rate were high but thankfully they let me go home and I've to go back this morning for an ultrasound to check for gallstones. The doctor did say it's likely to just be gastritis because I probably have Crohn's.
There has been no mention of GERD but I'm going for an endoscopy next month so hopefully should get some answers then.
I don't take vitamin D but maybe I should be!
12-18-2015, 09:08 AM   #13
Lady Organic
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you can ask your dr to test vitamin D in a next blood test. A lot of us are crucially lacking vitamin D. Taking supplements easily put back my level to a normal and healthy level. sometimes even just a one capsule 1000 UI/day is enough.
12-18-2015, 11:40 AM   #14
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How did the ultrasound go today? x
12-18-2015, 11:49 AM   #15
GlasgowGirl86
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I'll definitely look into getting my vitamin D levels checked. We don't see much sun in Scotland and I'm quite pale so tend to stay out of the sun anyway so I could probably be doing with a top up.
Ultrasound was fine apart from the hours of waiting about afterwards to have it reviewed by a doctor. No gallstones found so they are going with gastritis and I've just to wait for my endoscopy. My temperature and heart rate are back to normal now as well.
12-18-2015, 01:56 PM   #16
Christi
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They should check for Gerd/Hernia i also sufferd from relux really bad and eventually diagnosed me with Gerd/Hernia early this year. Hope you get some results
12-18-2015, 03:35 PM   #17
GlasgowGirl86
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I'm just wondering what other treatment options are there for GERD because I'm on maximum dose of omeprazole and I'm still getting reflux?
12-18-2015, 04:02 PM   #18
Christi
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i use lansoloc 30
12-18-2015, 05:10 PM   #19
GlasgowGirl86
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Wasn't sure what that was so I had to google it! It's lanzoprazole so very similar to omeprazole, both proton pump inhibitors.
12-18-2015, 05:51 PM   #20
ronroush7
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I'm just wondering what other treatment options are there for GERD because I'm on maximum dose of omeprazole and I'm still getting reflux?
I am on Prevacid.
12-18-2015, 06:02 PM   #21
GlasgowGirl86
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Prevacid is also just another brand name for lanzoprazole.
12-18-2015, 06:46 PM   #22
my little penguin
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Nisson fundilication is the drastic surgery step sometimes needed
But carefate can be used to coat the entire stomach
Causes constipation though
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12-18-2015, 06:48 PM   #23
my little penguin
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Oh and they can combo ppi with h2 blocker ( rantidine- Zyrtec )
12-18-2015, 06:57 PM   #24
GlasgowGirl86
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I take ranitidine on top of the omeprazole when it gets really bad.
Don't fancy the sound of surgery or constipation much :S
01-05-2016, 02:45 PM   #25
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Did you see your GP today?
I think mine is quite unusual to prescribe for IBD without a diagnosis. But I am getting probably the mildest drugs available and I am lucky that they help me.
You mentioned epigastric pain and reflux, has GERD been mentioned? I personally have no experience, but I know of it because so many members of this forum have it. Perhaps you can get more advice about reflux problems if you havent already.
And, are you taking your vitamin D? I had a discussion about it with my sister in law who lives in Glasgow. She said there are no recommendations for the general population to take vitamin D supplements. Strange that it is monitored here in NL but not there where it is even darker during the winter months.
So, you took mild IBD medications without diagnosis, what did it help? were you diagnosed later?
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