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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: 25
Latest Activity: Apr 13

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 WinningJane on April 13, 2016 at 6:49am

Thanks Allie,

Comment by Alice (Allie) Elaine Mastello on April 12, 2016 at 3:54pm
So true, it is like the"ever ready battery", keeps on giving. Glad the bleeding stopped for now, hopefully you will be ok for awhile. Thanks for letting us know!
Comment by WinningJane on April 12, 2016 at 3:24pm

Just got home from Lenox Hill Hospital where I have been for a week with a bleed. I had 2 transfusions but they did not repair the bleed. It's a long horror story. In any case, I suddenly just stopped bleeding which never happened before. So they discharged me. This is one disease that keeps on giving.

Comment by Alice (Allie) Elaine Mastello on April 11, 2016 at 2:28pm

Yes, I so understand about trying to make any plans between the bleeds and getting iron. There is also problems trying to get the iron before you ferritin plumits once you know it is low or going down. It is so important to have a husband or wife, whichever the case may be that is supportive and understands. I recently underwent a lot of tests and they found by biposy that I have Barrett's Esophogus, which is scary in its own right. I will see my hemotologist tomorrow and visit with her as well as my gastro dr in May. I am thankful to have this support group.

Comment by WinningJane on April 9, 2016 at 7:05am
Thanks Bacu. In the beginning, I went 2 years between bleeds but now it seems yearly. I am tired of it. I feel sorry for my husband. It is hard on him. He never complains though. The hardest part of this disease is that making plans can be so hard, because you never know. But I am stubborn. I keep on making plans and hope for the best. Thanks for the prayers. It helps.
Comment by Bacu on April 8, 2016 at 6:55pm
Wow, I take a break from the internet/email and all hell breaks loose in our group. Winning Jane, I am sending prayers your way. Whether they do a resection or cauterize you will feel so much better afterwards. No pun intended, but it was a pain in the butt to go through all this. You've been around life almost as long as me so you know that this too shall pass. Sounds like you've got a great doctor treating you.
Allie, the avm in your eye is something I think we all are concerned about. Was your eye doctor familiar with treating them in the eye? Is there are treatment for them in the eye? Sorry your going to have another thing to monitor.
And, welcome Suri. I hope this group will help you and give you encouragement. These avm's sure mess up our lives while we deal with them. Seems as though you are dealing with yours almost constantly. The doctor put me on probiotics everyday after my resection. One local doctor recommended Align and my Birmingham doctor recommended CVS store brand (less expensive). I have tried both and have not noticed any difference. I do think they keep my system running smoothly. Perhaps they will help you also.
I had my yearly visit with my gastro doctor in Birmingham last week and told him that I decided I would not need to see him again for treatment, but that I would come back each year just to visit. I've just completed 2 years bleed free after my SB resection. Wishful thinking! Sure wish we could all get together for a AVM gab weekend somewhere someday!
Comment by WinningJane on April 8, 2016 at 6:34pm
Thanks Allie. Not sure yet exactly how they are going to fix. They are going in with a double balloon spyrus enterescope. Your prayers help.
Comment by Alice (Allie) Elaine Mastello on April 8, 2016 at 3:16pm
Will they do a resection surgery, or will a cautery work?
Comment by Alice (Allie) Elaine Mastello on April 8, 2016 at 3:07pm
Keep is posted!
Comment by Alice (Allie) Elaine Mastello on April 8, 2016 at 3:05pm
Prayers for you for certain, and thanks for posting this so we know how to pray for you
 

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