Is there anyone else who has intestinal AVM? I happened upon this site in hopes that my husband could be able to connect with people and families that struggle with this problem. I can’t begin to understand what he is going through. I think that he feels like he’s the only one with this AVM. Thank you for making this site available.
Dear Shayna - I have a twenty-one year old daughter who has Down Syndrome, and though she has been symptomatic since birth, and after years of tests, blood transfusions, and even exploratory surgery - she has finally been diagnosed with intestinal AVM. Actually, her symptoms disappeared for the last nine years, but apparently she has had a bleed and here we go again. What makes this harder, is that because she has Down Syndrome, it’s difficult to even find out how she feels - Is she in pain? Can she feel anything? I, like you are looking to speak with others with this condition, so that maybe I can understand what she is going through. So if you and your husband can help me with any info, I would appreciate it so much. I hope your hubby is feeling OK - Please let me know. Susie
Dear Susie, So far John, my husband, is doing well. He hasn’t had a bleed for a little over a year. My husband never described feeling much pain. If he had a significant loss of blood, he would feel dizzy, weak, light - headed and irritable. He would also develop a fast pulse, due to his heart compensating for the blood loss. The only way that we could know for sure if he was bleeding, was if there was blood in his stool in the toilet. Then we would rush to the E.R. Then the doctors would try to find the bleed with angio-grams and scans. At times the bleed would play hide and seek, so it would be difficult for the doctors to treat it. Sometimes, the bleeding would stop and they would send John home until he bled again. So far, my husband has had 90% of his large intestine removed in an effort to control the bleeding. The doctors say that if he bleeds again, they should be able to embolize it. I’m not saying that your daughter will go through the surgeries that my husband has because each case is different. I will talk to my husband for more details about pain or symptoms and get back to you. I hope that your daughter will feel better soon.
Shayna
Susan Johri said:
Dear Shayna - I have a twenty-one year old daughter who has Down Syndrome, and though she has been symptomatic since birth, and after years of tests, blood transfusions, and even exploratory surgery - she has finally been diagnosed with intestinal AVM. Actually, her symptoms disappeared for the last nine years, but apparently she has had a bleed and here we go again. What makes this harder, is that because she has Down Syndrome, it’s difficult to even find out how she feels - Is she in pain? Can she feel anything? I, like you are looking to speak with others with this condition, so that maybe I can understand what she is going through. So if you and your husband can help me with any info, I would appreciate it so much. I hope your hubby is feeling OK - Please let me know. Susie
Hi Shayna,
You might want to join the Extremity AVM’s subgroup. I believe there may be members there who have intestinal AVMs. If you go to the middle of the right hand side of the Main Page, you will find a link to the subgroup in the Groups box.
Take care,
Debbie
Hi again,
You may also want to join Spouses of AVM Survivors. If you go to the Groups section on the Main page and click the View All link, you will find a link to that group on the page that comes up.
All the best,
Debbie
Shayna said:
Dear Susie, So far John, my husband, is doing well. He hasn’t had a bleed for a little over a year. My husband never described feeling much pain. If he had a significant loss of blood, he would feel dizzy, weak, light - headed and irritable. He would also develop a fast pulse, due to his heart compensating for the blood loss. The only way that we could know for sure if he was bleeding, was if there was blood in his stool in the . Then we would rush to the E.R. Then the doctors would try to find the bleed with angio-grams and scans. At times the bleed would play hide and seek, so it would be difficult for the doctors to treat it. Sometimes, the bleeding would stop and they would send John home until he bled again. So far, my husband has had 90% of his large intestine removed in an effort to control the bleeding. The doctors say that if he bleeds again, they should be able to embolize it. I’m not saying that your daughter will go through the surgeries that my husband has because each case is different. I will talk to my husband for more details about pain or symptoms and get back to you. I hope that your daughter will feel better soon.
Shayna
Susan Johri said:Dear Shayna - I have a twenty-one year old daughter who has Down Syndrome, and though she has been symptomatic since birth, and after years of tests, blood transfusions, and even exploratory surgery - she has finally been diagnosed with intestinal AVM. Actually, her symptoms disappeared for the last nine years, but apparently she has had a bleed and here we go again. What makes this harder, is that because she has Down Syndrome, it’s difficult to even find out how she feels - Is she in pain? Can she feel anything? I, like you are looking to speak with others with this condition, so that maybe I can understand what she is going through. So if you and your husband can help me with any info, I would appreciate it so much. I hope your hubby is feeling OK - Please let me know. Susie
Thanks so much for the info, Debbie. Susie
Debbie Considine said:
Hi again,
You may also want to join Spouses of AVM Survivors. If you go to the Groups section on the Main page and click the View All link, you will find a link to that group on the page that comes up.
All the best,
Debbie
Thanks for the info, Shayna - I appreciate it. With Erin, it is impossible other than doing blood work, to tell if she has had a bleed, because apparently it is way up somewhere, and the blood is very dark. To top it off, when the surgeons did exploratory surgery, they found a Meckel’s Diverticulum in her small intestine and removed part of it. Unfortunately, this is the only place where vitamin-B is absorbed, so now she needs B-12 shots each week. Anyway, it is such a helpless feeling that when she has a bleed, I don’t notice. She gets anemic so quickly, and I always think “why didn’t I notice circles under her eyes, or that she is sluggish?”, but I don’t. I guess when you’re with someone everyday, it kind of creeps up on you. Keep me posted. Susie
Susan Johri said:
Shayna said:Dear Susie, So far John, my husband, is doing well. He hasn’t had a bleed for a little over a year. My husband never described feeling much pain. If he had a significant loss of blood, he would feel dizzy, weak, light - headed and irritable. He would also develop a fast pulse, due to his heart compensating for the blood loss. The only way that we could know for sure if he was bleeding, was if there was blood in his stool in the . Then we would rush to the E.R. Then the doctors would try to find the bleed with angio-grams and scans. At times the bleed would play hide and seek, so it would be difficult for the doctors to treat it. Sometimes, the bleeding would stop and they would send John home until he bled again. So far, my husband has had 90% of his large intestine removed in an effort to control the bleeding. The doctors say that if he bleeds again, they should be able to embolize it. I’m not saying that your daughter will go through the surgeries that my husband has because each case is different. I will talk to my husband for more details about pain or symptoms and get back to you. I hope that your daughter will feel better soon.
Shayna
Susan Johri said:Dear Shayna - I have a twenty-one year old daughter who has Down Syndrome, and though she has been symptomatic since birth, and after years of tests, blood transfusions, and even exploratory surgery - she has finally been diagnosed with intestinal AVM. Actually, her symptoms disappeared for the last nine years, but apparently she has had a bleed and here we go again. What makes this harder, is that because she has Down Syndrome, it’s difficult to even find out how she feels - Is she in pain? Can she feel anything? I, like you are looking to speak with others with this condition, so that maybe I can understand what she is going through. So if you and your husband can help me with any info, I would appreciate it so much. I hope your hubby is feeling OK - Please let me know. Susie