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: May 23

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:…Continue

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Comment by Alice (Allie) Elaine Mastello on May 23, 2016 at 10:51am

It is great to hear from you all! Thanks for "checking in". We need to do that more often. Bacu, 2 years, wow! I pray that good stretch keeps going! I am doing ok, sailing along as you all are, lots of things to "balance". This year is moving along pretty quickly, it seems. Enjoy the sunshine!

Comment by WinningJane on May 23, 2016 at 6:17am

Bacu, so glad you have had no bleeding for 2 years!!!! Good to hear from you too. I just keep on making plans and keep my fingers permanently crossed! It's good to keep in touch so thanks Allie for getting the ball rolling.

Comment by Bacu on May 22, 2016 at 7:22pm
Hi Gals, Good to hear from you. Thanks for checking in. I'm sorry your having problems with your back and Barret Escphagus Allie. I've been having a bit of acid reflux and cut out the occassional glass of wine and it seems to be doing the trick. Chocolate seems to create acid for me also. This waiting for the Poop to hit the Fan really stinks. No bleeding for 2 years now, going for 3. Keeping you all in my prayers.
Comment by WinningJane on May 22, 2016 at 5:37pm

Hi Allie. Thanks for checking in. Sorry for your troubles. I, too, am doing okay. Of course you know it's not easy but we keep on keepin' on.

Comment by Alice (Allie) Elaine Mastello on May 22, 2016 at 10:47am

Wanted to take a moment to "drop in" to say HELLO. I have been busy getting procedures on my back since I have 8 collapsed disks, right now it boils down to pain management, someday a big surgery. I was also diagnosed with Barretts Eshopogus. I get my iron checked in a few weeks. Thinking of everyone however and wanted you to know I am doing OK.

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.

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