Intestinal Bleed

[Randy]

Hi All: I've been out of commission for a while. I woke up one morning to go to work and noticed blood in my stool. Fearing the worst I rushed off to emergency. Internal bleeding was a big problem with my first bout of WG in 2008 and I was thinking a major flare. The Doctors were great, the rheumatologists on staff checked out all areas for any signs of WG, they did a chest x-ray which looked the same as my last one in 2010 and were 99% certain I wasn't having a flare. The GI doctors did a colon ostomy, and a scope of my stomach and upper part of the small intestine but could not find anything. They then did a CT scan of the small intestine and found a dark spot. I was rushed off to surgery. They do a scope thru a vein in the groin to the spot but when they got there the vein they thought was bleeding was ok. Next, I was sent to a GI specialist who does a deep scope that goes farther into your small intestine, by this time the bleeding had stopped. He did not want to do the deep scope because I have had so many intestinal operations (6), there is stitching and scaring and he felt the scope might end up doing more harm than good. I was then scheduled for a camera endoscopy. You swallow a pill with a camera in it and it takes pictures as it goes through your system. Like the colon ostomy, the prep it the worst part of the procedure. You have to drink the same terrible tasting liquid to clean out your system. This was done last week end, I haven't heard anything back yet, I'm hopeful that is good news. I would think (hope) that they would contact me right away if they found anything major.

I'm back at work,feeling good and am glad it wasn't the Wegner's. I was not looking forward to going back on to all that medication again. Just thought I would share this experience in case it should happen to any of you.

[Birdie]

You swallow a pill with a camera in it and it takes pictures as it goes through your system.

I formally request no posting of pictures without a warning in the title. :)

Sure is good to hear such a positive outcome.

[mishb]

Wow Randy, you get some crazy, scary symptoms.

I wonder what the bleed could have been from - curious actually.
You are correct though, that they would definitely contact you, and get you back into hospital, if it was anything serious.

Keep us posted

[Alysia]

Hi. I am sorry for the tough time you have being through and glad that you are doing better.
I have colon involvement of wg. When its wg activity (flaring or smoldering) in the colon there will always be, at least for me, more symptoms like joints pains, nose bleeding, coughing, ear pains etc. Never only one area. My colon is never normal and I cant eat lots of things, outherwise I get crazy diarhea. When there are issues only of the colon its prob a virus or eating something that I shouldnt eat. Food must be totally "clean".
Please update us about the results.

[Randy]

I don't think I want to see the pictures either.

[Randy]

I have the same problems, especially restaurant food.

[Birdie]

I don't think I want to see the pictures either.

Actually, kidding aside there is a documentary about that procedure. A reporter swallowed the camera and went through the process. The pictures were very high quality and very interesting.

[Dirty Don]

Yes, I got to watch excellent TV on both the computer & a wall TV of my sinuses and the hamburger WG created in there. Mmmmm, not an Emmy award for the ENT...but was interesting while weird at the same time...that's tooooo close to my dinosaur brain to be watching...yuk...reminds me of when some peeps on here went 'booger pic' crazy! Again, yuk...

[Alysia]

Yes, I got to watch excellent TV on both the computer & a wall TV of my sinuses and the hamburger WG created in there. Mmmmm, not an Emmy award for the ENT...but was interesting while weird at the same time...that's tooooo close to my dinosaur brain to be watching...yuk...reminds me of when some peeps on here went 'booger pic' crazy! Again, yuk...

One of the best threads....
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3378-warning-extreme-booger-pictures-ahead-not-safe-lunch.html

[Alysia]

I formally request no posting of pictures without a warning in the title. :)

Sure is good to hear such a positive outcome.

Just see the link in my last post above.
Especially Phil's star fish. A masterpiece.

[Birdie]

Alysia....

LOL...LOL...LOL...

[Randy]

yes, I remember the sinus one too, it was ugly looking.

[Randy]

Just thought I'd give everyone an update on my bleed episode. I went to see the GI specialist last week, He went on holidays for three weeks after the camera pill procedure so wasn't able to see him until now. The photos turned up with nothing. No tumors, no polyps, scars, or sign of cancer. Everything looked normal. He thought a blood vessel probably burst and this caused the bleeding and it was able to clot on its own. He told me this is not unusual in older people(I'm 65 but don't consider myself OLD) He thinks it is safe to travel since I have not had any problems since. I'm still a little nervous about that though. I do not have any plans to go anywhere so I'll just wait and see. My hemoglobin is still low but it comes up with each blood test so he doesn't think that indicates any bleeding. Every one assures me it has nothing to do with Wegners as I do not have any other symptoms. I'm not sure though. My Rheumatologist told me to come back if I had any weird symptoms but all appears to be normal so I will just watch carefully for anything out of the ordinary.

[Birdie]

Just thought I'd give everyone an update on my bleed episode. I went to see the GI specialist last week, He went on holidays for three weeks after the camera pill procedure so wasn't able to see him until now. The photos turned up with nothing. No tumors, no polyps, scars, or sign of cancer. Everything looked normal. He thought a blood vessel probably burst and this caused the bleeding and it was able to clot on its own. He told me this is not unusual in older people(I'm 65 but don't consider myself OLD) He thinks it is safe to travel since I have not had any problems since. I'm still a little nervous about that though. I do not have any plans to go anywhere so I'll just wait and see. My hemoglobin is still low but it comes up with each blood test so he doesn't think that indicates any bleeding. Every one assures me it has nothing to do with Wegners as I do not have any other symptoms. I'm not sure though. My Rheumatologist told me to come back if I had any weird symptoms but all appears to be normal so I will just watch carefully for anything out of the ordinary.

That's all great news.

Now from a techie curiosity perspective, how'd the pill camera work out? So big it was hard to swallow? I get from your post that it worked but did you see the pics? Were they any good? Did it require retrieval to view the images? Did the camera taste bad? Etc... OK, so I'm really curious about this...

Thanks,
Gary

[Randy]

The pill is about the size of a large vitamin pill. It was easy to swallow and tasteless. I had to wear a satchel with a sensor in it. It pics up the images and at the end of the day they load the images from it, into a computer. I didn't see any of the pictures, but he said they turned out very clear . There are something like 50,000 of them. It takes picture every few seconds. It must take quite a while to review them. Must be boring too.

[Birdie]

The pill is about the size of a large vitamin pill. It was easy to swallow and tasteless. I had to wear a satchel with a sensor in it. It pics up the images and at the end of the day they load the images from it, into a computer. I didn't see any of the pictures, but he said they turned out very clear . There are something like 50,000 of them. It takes picture every few seconds. It must take quite a while to review them. Must be boring too.

Thanks Randy.

With the exception of taste, which was attempted humor, those were exactly the answers I was curious about. That technology is amazing. A few years ago it was impossible. Reminds me of the 1960's movie, or maybe it was a TV show, where they shrunk a small submarine and crew then injected it into a person.

[Dirty Don]

Jumping on a techie bandwagon: my ENT allowed me to watch as the camera went in, down, around, and what felt like 'through' in real time - she had a computer screen & I had a wall flat screen above me to watch: 'see that, that's evidence of Wegeners'; see that, that's nothing but your sinuses are a wreck; see that, your esophagus has lots of mucous'. Other than some shifting around of the camera, it wasn't so bad. Sooooo much fun, I'd rather watch cartoons...BTW, I had results and dxes immediately...always left with something to work on & avoid cameras!!!!

[Alysia]

I remember Phil's post, saying he liked that camera watching, and wanted home version, to watch on Friday's nights...

[Randy]

They did the camera scope into my stomach too. They had to put me to sleep though. I gaged on it so badly that was the only way they could get it to go down. What I find amazing is that if they had found anything he told me they could go in through a blood vessel with a camera and what ever they use to repair it. Its amazing that they can work with equipment that small. Computer hard drives are getting smaller and you can pack more and more onto them. I guess it's similar technology.