Double Balloon Clear - What Next?

[MrF]

Hi,

Currently trying to get a diagnosis for my symptoms pinned down.

Symtoms:

Chronic mouth ulcers.
Arthralgia in joints.
Weight loss (58kg and dropping slowly) (Also, male and 5ft 9)
Soft stool or diarrhoea. BM 4+ per day.
Some cramps, relieved on evacuation.
Fatigue.

Investigations

FBC : Normal, Normal and raised ALP
Calprotectin: 165 and 135 (after 6 weeks of budesonide)
Colonoscopy: Normal and negative biopsy.
Gastroscopy: Haitus hernia, chronic gastritis.
Barium MRI: Normal.
Capsule Endoscopy: small ulcers in ileum.
Double Balloon Enteroscopy: looked normal, awaiting biopsy

Medication

6 week trial of Budesonide. (Very good response)

So, I've had a few tests over the last year and none have been that illustrative.

I've seen 4 Gastroenterologists (referred about for various tests) (3 of which are big names in UK IBD) and each say it looks like Crohns.

The purpose of the DBE was to histologically confirm the pill cam but that's not looking likely. Also, DBE was 8 months after pill cam.

So, my question is what should I do next?

Surgeon recommends another double balloon as Crohns is notoriously difficult to find.

I'm starting to lose faith, is it normal for it to be this elusive?

 

[shamrock15]

If three say crohn's, why are they not treating it as crohn's? Have any symptoms returned now that you are off budesonide?

 

[ronroush7]

There are several people on here are undiagnosed. Keep looking until you have a diagnosis.

 

[my little penguin]

Have you seen a rheumatologist
Spondyloarthritis can cause sub clinical GI stuff

Also MRE might help woth a dx
Good luck

 

[MrF]

Hi, I lost a stone in about 6 weeks when I came off Budesonide and my mouth ulcers and diarrhoea came back. That was 6 months ago now though and I've just sort of lived with it since then.

They are reluctant to medicate without a tissue diagnosis because of the risk of medication?

Thanks for all the replies

 

[Jabee]

Wow. You are stuck between a rock and a hard place. Many GIs won't give a crohn's diagnosis without a biopsy that shows granulomas even though a minority of crohn's patients have granulomas. But I am honestly confused as to how your consultants think medication is more dangerous that continuous intestinal inflammation. You've lost a stone since discontinuing Budesonide; it stands to reason that the DBE was clear because you had responded to the medication and your intestines had healed. You should definitely contact your consultant (s) and let them know what's happening. A good physician looks at symptoms and test result for a diagnosis; not everyone fits all the clinical boxes. It certainly looks like crohn's; it's not normal to have mouth ulcers and diarrhoea. I hope you can persuade your doctors to let you continue the Budesonide, schedule you for an emergent DBE, or put you on a different maintenance medication. So sorry this is happening.

 

[ronroush7]

Wow. You are stuck between a rock and a hard place. Many GIs won't give a crohn's diagnosis without a biopsy that shows granulomas even though a minority of crohn's patients have granulomas. But I am honestly confused as to how your consultants think medication is more dangerous that continuous intestinal inflammation. You've lost a stone since discontinuing Budesonide; it stands to reason that the DBE was clear because you had responded to the medication and your intestines had healed. You should definitely contact your consultant (s) and let them know what's happening. A good physician looks at symptoms and test result for a diagnosis; not everyone fits all the clinical boxes. It certainly looks like crohn's; it's not normal to have mouth ulcers and diarrhoea. I hope you can persuade your doctors to let you continue the Budesonide, schedule you for an emergent DBE, or put you on a different maintenance medication. So sorry this is happening.

Agree

 

[Scipio]

Weight loss (58kg and dropping slowly) (Also, male and 5ft 9)
Soft stool or diarrhoea. BM 4+ per day.
Some cramps, relieved on evacuation.
Fatigue.

Investigations
FBC : Normal, Normal and raised ALP
Calprotectin: 165 and 135 (after 6 weeks of budesonide)
Colonoscopy: Normal and negative biopsy.
Capsule Endoscopy: small ulcers in ileum.
Double Balloon Enteroscopy: looked normal, awaiting biopsy

Medication
6 week trial of Budesonide. (Very good response)

The above partial list alone would be more than enough for my GI to diagnose Crohn's. In fact I was diagnosed based on anemia + right side abdominal pain + 6 cm of small bowel thickening seen on x-ray + a few apthous ulcers seen in ileum by capsule endoscopy. Everything else including colonoscopy and biopsy was normal.

In your case the elevated calprotectin rules out IBS. And the rest of the pattern looks a lot like Crohn's.

IMO you need a bolder doctor. With 4 GIs, including big names, saying Crohn's, what is everyone waiting for?

 

[MrF]

The above partial list alone would be more than enough for my GI to diagnose Crohn's. In fact I was diagnosed based on anemia + right side abdominal pain + 6 cm of small bowel thickening seen on x-ray + a few apthous ulcers seen in ileum by capsule endoscopy. Everything else including colonoscopy and biopsy was normal.

In your case the elevated calprotectin rules out IBS. And the rest of the pattern looks a lot like Crohn's.

IMO you need a bolder doctor. With 4 GIs, including big names, saying Crohn's, what is everyone waiting for?

Hi,

Just heard that the DBE and biopsies came back clear. The suggestion I have had back from the surgeon is to review the capsule endoscopy findings and perform a DBE from the mouth down if it makes sense.

Really frustrated and wondering if anyone has experience of differential diagnosis. I've heard about Behcets but don't meet the genital or eye symptoms.

Thanks for everyones help.

 

[ronroush7]

Hi,

Just heard that the DBE and biopsies came back clear. The suggestion I have had back from the surgeon is to review the capsule endoscopy findings and perform a DBE from the mouth down if it makes sense.

Really frustrated and wondering if anyone has experience of differential diagnosis. I've heard about Behcets but don't meet the genital or eye symptoms.

Thanks for everyones help.

Sending support. I hope you get answers soon