08-15-2012, 09:17 AM   #1
Join Date: Jul 2012
Location: london, United Kingdom
No diagnosis

Hi Everyone

I am like hundreds of you out there, undiagnosed and crying for help! I have been suffering right sided abdominal pain for the last 11 years now and all I can say is that every year the pain gets worse.

In 2002 I had my gallbladder removed by keyhole surgery as the doctors thought this was the cause of my pain. The pain got increasingly worse with stomach cramps that are worse than labour pains, alternating diarrohea and constipation, mucus in stools.

I have had so many tests done, CT Scans, Barium Enema, capsule endoscopy, Barium Meal Follow Through , Breath Test, Colonoscopy x 2, and MRI Scan.
Feacal Test.

The Colonoscopy showed that part of my bowel that should be positioned on the right side has been pulled over to the left, making it impossible for the scope to get anywhere near my small bowel, the consultant has said it is too risky for them to carry out another colonoscopy.

The Barium follow through showed up ulceration and slight narrowing of the terminal ileum, but they said that this test is not always conclusive, I then suggested that if they carry out another one and get the same results then surely the results must be conclusive.

The Breath test suggested that I have bacterial overgrowth.

I have been begging for a laparoscopy to be done, but the surgeon just keeps fobbing me off with this could cause scar tissue and make your pain worse, I understand you can get scar tissue but I need a diagnosis and the only way they are going to see anything is by going in there.

I have lost a stone in 1 month! Has anybody else had this kind of delay in diagnosis?
08-15-2012, 09:29 AM   #2
Senior Member
michaelearnest's Avatar
Join Date: Aug 2012
Location: Cuyahoga Falls, Ohio
I have not had that diagnosis but I am wishing you all the luck in the world.

Michael Earnest - "Never Give Up on Your Gut"

Original DX - Crohns - 1987
Sulfa zine, Asacol, Pentassa, Remicade
Cal/Mag 125mg x2
Vit D 1000iu X 4
Ultram 50mg (As needed)
Resection Surgery - 2006
Currently on 50mg Imuran

Facebook Page - Kicking it for Crohns - Please go Like my page

Email - [email protected] - Email me with any questions - 25 years experience!
08-15-2012, 04:27 PM   #3
StarGirrrrl's Avatar
Join Date: Sep 2010

My Support Groups:
Have they booked another Barium test for you, and are they giving you treatment for the basterial overgrowth?
2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
08-16-2012, 02:00 AM   #4
Join Date: Jul 2012
Location: london, United Kingdom
Hi Stargirrrl

No they don't seem to want to give me another Barium, I take Ciprofloxacin for the Bacterial overgrowth, doesn't relieve any of the pain though.

I am just so depressed at the moment, this is years I have been suffering, like many of us on here, but it shouldn't be that we have to suffer pain, I cannot do anything that I used to be able to, like play golf, swimming, I used to be very active, now I just about have the energy to get up and shower.

I just don't know who else to turn to. Thanks for replying. Hope you are not suffering at the moment.
08-16-2012, 08:55 AM   #5
StarGirrrrl's Avatar
Join Date: Sep 2010

My Support Groups:
You're welcome, I am always suffering at the moment,like you

Have you thought about asking to be referred to another Hospital?

St Marks in London is supposed to be a great Gastro place, would that be possible for you to get to from where you are? Your GP or current Gastro Dr can refer you.
08-19-2012, 07:23 AM   #6
Forum Monitor
Join Date: Oct 2010
Location: NY

My Support Groups:
Hi. 11 years is LONG!! Have you had an MRE? (abdominal MRI after drinking LOTS of contrast fluid) Maybe this will help confirm the findings on the SBFT?
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)

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