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!

[Alysia]

Makes sense as it's all inflammation!

he said that there are granulomas in the colon both in wg and in Crohn, which look the same.

[ingemlb]

Ah ok. In my case they just found an inflamed Ileum.

[Alysia]

not in every wg there are granulomas. even in the lungs. this is my case too, no granulomas. thanks God.

[ingemlb]

Alysia that's interesting. They haven't found any for me yet. Inflammation (non-specific) in just about every part of me but no granulomas have so far shown up. So I guess that's something to be thankful for.