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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?

Members: 24
Latest Activity: Jan 24

43 Cauteries last time

Discussion Forum

Thalidomide and GI AVMs

Started by Madere (dancermom) Jan 26, 2014. 0 Replies

Here are some links to resources about thalidomide and GI avms:http://clinicaltrials.gov/show/NCT00389935…Continue

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Comment by Alice (Allie) Elaine Mastello on January 24, 2016 at 11:03am

Thanks you all for responses and discussions, it helps. My AVMs bleed continuously just at different rates of speed. I can not have the balloon procedure because I am loaded with adhesions that would make it far too risky. The drs agree on that one. My adhesions cause my bowels to twist, etc. One dr said I was a "train wreck" inside. My gastro and hemo dr also do not seem to have anyone in charge.

Comment by Bacu on January 24, 2016 at 10:34am
Hi All,
Allie, I'm sorry your having a flare-up again. It sure puts a damper on everything. The Sandostatin Lars Depot injections I received for a year must be working for me because I haven't had a flare up since starting them and my resection. The drug restricts the blood vessels which makes sense to me. And, the side effects I thought were from the drug were actually from the resection causing a lactose intolerance. So, I changed my milk from regualr skim to Lactaid skim (which I like more that regular) and I seem to be just fine. I will have my 2 year AVM free anniversary next month and feel completely back to normal. Have you all had the double balloon scopes? Perhaps the avms are out of the reach of the regular scopes like the major ones of mine. These DBS are only available through certain doctors trained to perform the procedures.
Comment by Michele Ferrier on January 24, 2016 at 10:10am

Bone and joint pain.

Comment by Michele Ferrier on January 24, 2016 at 10:09am

Hi bellagran and everyone, I also recently heard about hormone therapy to control both formations of and bleeding of AVM's. I'm curious which doctor prescibed that treatment. Or does your husband have one doc managing his case. I have a hemotologist and a g.i. doc and neither one seems to be in charge. I do know in my case, hormones can have bad side effects but no one really wants to even talk about drug therapy. Also, does anyone else get severe side effects from the iron infusions? I get severe bone and joint and bad hot flashes and night sweats. Thanks for your thoughts. Hope everyone is doing well.

Comment by WinningJane on January 24, 2016 at 5:17am

Snow, snow everywhere here on Long Island. Thanks for the suggestion bellagran. One never knows what will work for the bleeding. I sort of live with my fingers crossed. Allie, I am sorry that things are so rough for you,. Living with this condition is not easy!!

Comment by bellagran on January 23, 2016 at 9:05pm

I'm trying to get a message out about gastrointestinal bleeding. My husband has suffered through this since 2004 being treated with cauterization, running the gamut of every kind of treatment to stop the bleeding but it would always start back up. In and out of the hospital many times. His doctors visit two months ago was a shocker when the doctor suggested a birth control pill, Zovia. For two months now his bleeding has almost stopped and he hasn't had a transfusion for two months. This is just a friendly suggestion maybe you can talk to your doctor about! All the best to all of you!!

Comment by bellagran on January 23, 2016 at 8:57pm

Comment by Alice (Allie) Elaine Mastello on January 23, 2016 at 8:30pm
Did everyone do ok with the snow storm? Thinking about all of you. These AVMS have me discouraged here, I know you all know what I mean, I was in tears this morning, better now, one day at a time, prayers for all.
Comment by Alice (Allie) Elaine Mastello on January 10, 2016 at 7:58pm
Thanks, actually, Dr's are not doing anything, will see what happens in next month or two. The Dr seemed to not notice, she was too over booked and behind on her schedule , rather frustrating
Comment by Bacu on January 10, 2016 at 7:30pm
WinningJane, sounds like your holding your own right now. Hope it continues indefinitely!
 

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