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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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Latest Activity: 17 hours ago

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Comment by Alice (Allie) Elaine Mastello 17 hours ago

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 yesterday
Yes I am definitely a type A, go go go personality. Benadryl HUmmm, I will try it, thanks
Comment by Bacu yesterday
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 yesterday

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.
Comment by Alice (Allie) Elaine Mastello on July 20, 2014 at 12:59pm

How did they come up with this medicine for treatment, did they test your growth hormone? (I was reading about the link with the growth hormone.) I know, wonder down the road what problems will happen from the meds/ Isn't weird how the AVMs come about in our otherwise healthy bodies!

Comment by Bacu on July 20, 2014 at 11:26am
Allie, I don't have tumors either. The drug generic name is Octreotide. I take one 20mg shot once a month. The drug was not developed for treating avms, but controls the bleeding in some patients. Other than the avms I am perfectly healthy (yes, I knocked on wood). Will be interesting to see if the drug creates other problems down the road. Hope your feeling better.
Comment by Alice (Allie) Elaine Mastello on July 20, 2014 at 10:49am

I looked on line for the meds that you are taking Bacu. Not sure how that would work with me since I have no tumors. Thanks for your input.

Comment by Bacu on July 18, 2014 at 3:50pm
Allie, sorry to see that you are having a bad time of it again. Please know that we all are wishing you a swift recovery. Reading over the entries since I was last online I see that you are taking on a lot right now. Prayers are with you and your family. I have been doing well. The Sandostatin Lars Depot the doctor prescribed seems to be keeping the avm's at bay. Some hair loss from the medication but I can handle that over the bleeding. We'll see how well it worked when I stop taking it in December. This drug may be one that could help you.

Moderator
Comment by dancermom on July 17, 2014 at 11:33am

Warn welcome to Johntheelder. Please see John's comments on the Angiodysplasia discussion up above.

 

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