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Gastrointestinal AVMs

I am looking for others with bleeding stomach and intestinal AVMs. Mine has been particularly bad this last year. Had 20 cauterized only to have them rebleed. I get three weeks of iron infusions every three months or sooner right now. Are there others out there like me?

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Comment by Alice (Allie) Elaine Mastello on October 7, 2014 at 10:34am

Welcome Laura. Sounds like you have been doing a lot of research. We need people like you in our groups. Answers are so hard to come by.

Comment by Alice (Allie) Elaine Mastello on August 12, 2014 at 11:32am

Just finished the book "Determination"....AVM book, by Keith Buff. Very good and helpful reading!

Comment by Alice (Allie) Elaine Mastello on August 2, 2014 at 9:02pm
Lol, yes I did overdo it, guess we all have that trait but it does make us strong :-)

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Comment by dancermom on August 2, 2014 at 6:48pm

May the 8 weeks pass swiftly, Allie. :)

Comment by Bacu on August 2, 2014 at 6:44pm
Hi Allie
Good to see that your up and about. Also good to see that your trying to be inventive - when you invent a way to clean the house without atually doing it please share with all of us! Don't over do!
Comment by Alice (Allie) Elaine Mastello on August 1, 2014 at 9:37am

Hi all. I am coming along here. Slowly making progress back, actually trying to clean house using a walker to get around with this boot. Trying to be inventive! Doing good...

Comment by Alice (Allie) Elaine Mastello on July 31, 2014 at 7:19pm
Yes I am definitely a type A, go go go personality. Benadryl HUmmm, I will try it, thanks
Comment by Bacu on July 31, 2014 at 5:57pm
Hi Allie, sorry about that ankle. Sometimes when we're feeling a bit better we try to make up time by doing things too too fast. Being a Type A I have been going nuts doing nothing for too long. Just started back on the treadmill a week ago and feel really great the last few days. Hope your recovery is fast. My husband has a hard time sleeping also. He plays tennis with a few doctors and they recommended that he take 2 Benydryl at bedtime. It is not habit forming and works for him. They said they take it nightly to help them sleep and recommended it to their patients. Get well soon.
Comment by Alice (Allie) Elaine Mastello on July 31, 2014 at 2:36pm

Hello everyone! A few days ago I made a misstep and twisted my ankle and pulled and tore ligaments. So I am wearing "the boot" and on crutches or walker for around 8 weeks. I had just ordered my new treadmill, how funny is that! I have a few more lessons in life to learn, obviously, patience being the one big one for me. Anyway, I am doing good, just hoping for a night's sleep one night. How is everyone?

Comment by Bacu on July 20, 2014 at 1:35pm
Allie, it works as a vasoconstrictor to stop or shrink the source of bleeding. Here is a link from a nurses site that explains it in my language (non-medical). I just don't understand the medical lingo on some of the sites. http://allnurses.com/general-nursing-discussion/octreotide-407878.html
Obviously, they use it a lot for gi bleeds from this site. My nurses at the Infusion Center tell me that the use it a lot for diarrhea in cancer patients.
 

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