GI symptoms?

[jlove]

Hi everyone,

Has anyone dealt with any GI symptoms related to Wegener's? I noticed some blood in my stool today and I'm wondering if this is something anyone else has dealt with? I'm sure it's not a positive thing but I'm wondering if I should be alarmed by this.

Thanks!

[Debbie C]

I would mention it to your dr. simply because that seems to be one of the questions they always ask also if is is black and tarry , Better safe than sorry

[Alysia]

Hi
I have colon involvment of wg. my symptoms are aggresive diahrea, very painful spasms and stomchaches, loss of weight (even with pred). I dont think that I had blood. but I was not coughing blood as well eventough I have lung involvment. wg has different manifastations.
you need to check if it is IBD and you can easily check it using this test: Calprotectin - Intestinal Inflammation Index Test
I got strong positive in it. good luck and update us.

[ingemlb]

Hi Jess. I was diagnosed with Crohn's or IBD in 2010 when during a routine colonoscopy they found an inflamed ileum. I have had many years of bowel and colon issues. Lots of pain attacks and bowel blockages due to adhesions, IBS and lately IBD. Then they found some bleeding stomach ulcers. In 2012 I was told I had chronic gastric ulcers which were not caused by the Helicobacter bacteria as they couldn't find that in the biopsy.

Then early this year when I was hospitalised due to Vasculitis (severe joint pains) they did another gastroscopy and still found the ulcers there but my gastroenterologist believes it's all due to Wegener's and that the IBD diagnosis was probably incorrect. I was too sick at the time to do another colonoscopy but once things have settled down later in the year they will check it all again to see if the treatment is having an effect.

I do have bleeding from time to time. from June last year had severe recurring diarrhea attacks one which landed me in hospital for a week in November on a drip. Tests never found any bacteria or virus responsible my bowel specialist felt at the time that I must have had some kind of infection in June (travelling back from overseas) but never gave the bowels a chance to recover as I had too many trips away (Mum was sick and dying in NZ). Anyway ... by January all my joints were inflamed. During the same year (2013) I had recurring sinus issues ending with sinus surgery in October which also never really healed.

So now I feel it was all due to Wegener's. In my case my kidney, lung, liver and heart seem to be ok and all my problems are in the Sinus, eyes, mouth, and digestive tract from top to bottom. When the stomach ulcers bleed it's more like black tarry stools. When things bleed in the colon it's bright red but then I also get periodically inflamed haemorrhoids and they can also bleed bright red so it's not always easy to figure out what is what. I get a lot of spasms along the digestive tract. Sometimes in the oesophagus, sometimes stomach, sometimes bowels.

But yes... get it checked out. Knowing how aggressive Wegener's can be you don't want any permanent damage to your bowels or colon.

[Alysia]

my gastro doc says that in a colonscopy, Crohn and WG looks much the same....

[ingemlb]

my gastro doc says that in a colonscopy, Crohn and WG looks much the same....

Makes sense as it's all inflammation!

[Juliesjewels]

Ingemlb, how did you receive a diagnosis of wegeners without a biopsied granulomatosis? I've got all the symptoms but negative ANCA & negative nasal biopsy so they're only treating me with prednisone which isn't helping put disease in remission. I'm miserable.


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[renidrag]

Anca should not be used as a marker for WG. Do you have sinus problems? I only have lung involvement and was diagnosed after two Bronchoscopies. Never had a nasal biopsy. I think the most telling symptoms are in blood testing, especially the SED rate, CRP and Creatinine. Have you had any blood tests run other than ANCA?
Dale

[Alysia]

Ingemlb, how did you receive a diagnosis of wegeners without a biopsied granulomatosis? I've got all the symptoms but negative ANCA & negative nasal biopsy so they're only treating me with prednisone which isn't helping put disease in remission. I'm miserable.

Hi. there can be WG even with negative anca. AND - I had 2 false negative nose biopsies. but I do have WG. my doc did case conference about me, and after consulting with couple of experts, looking at the clinical pic, they concluded that I have wg.
since then I developed saddle nose, which makes me a weggie, with no doubts

[LisaT]

The ENT who believes I have Wegener's said he can diagnose it based on symptoms... I'm ANCA-negative and haven't had any biopsies. He's basing it on subglottic stenosis and obvious inflammation in my nose and throat, and pain and fatigue, I think. (My other docs don't necessarily agree though). It sounds as though you need a second opinion. From what I understand, the SED rate and CRP are pretty non-specific inflammatory markers.. They tell you when you have autoimmune inflammation, but don't narrow it down to which disease. I've had these elevated with polymiositis, then RA. Now they're not elevated although I feel like Wegener's (or similar symptoms if it's not wegener's) is not under control. It seems that this disease is unique in every person, and also overlaps or coexists with other autoimmune inflammatory diseases, so the diagnosis takes someone who looks at all of the signs and symptoms and blood tests and whatever other info they can get, and assesses the person and makes the call based on the whole bigger picture. For sure no one factor should cause them to rule it out, if all other aspects point to the disease. That's too dangerous.