Watermelon stomach and stomach surgery
Posted 12 December 2008 - 05:28 AM
Posted 12 December 2008 - 05:59 AM
Welcome to the ISN forums! It's good to see that you have found us as a source of information. I'm so sorry to read about your mother and what she is going through with watermelon stomach. 15 laser treatments is a lot.
I can't offer any advice from personal experience, but I did just read about a new treatment called cryotherapy and that has proven to be successful. You can read the abstract on our Watermelon Stomach treatment page. Just click on the link.
I know we have a couple of people with G.A.V.E. and I'm sure they'll chime in with some advice and experience. I wish your mother the best in whatever she decides. Surgery is always such as hard decision. Please keep us informed on how she is doing.
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International Scleroderma Network (ISN)
Posted 12 December 2008 - 06:06 AM
Posted 12 December 2008 - 09:33 AM
I was diagnosed with watermelon stomach at the age of 47. It was discovered when my hemoglobin went down to 6.1. I had two transfusions at that time. When the doctor did the endoscopy I wasn't actively bleeding so he did no treatment. I was put on iron tablets and my hemoglobin went up to 14. I had no bleeds for 2 and 1/2 years. On the second bleed I got two transfusions and had the argon plasma coagulation treatment. I then had another treatment 6 weeks later. That was June, 2007. I am not on iron and I haven't had any more bleeds. I am one of the fortunate ones. I am so sorry that your mother is having so many problems. I do know there is someone on here that has had part of their stomach removed. I think there is someone else on here that tried a new treatment, but I can't remember the name.
Posted 12 December 2008 - 11:15 AM
Posted 12 December 2008 - 07:37 PM
Can't help you with first hand experience in watermelon stomach but wanted to welcome you. Sorry your mother is going through so much. Someone will help you out with whatever their experience has been with some of the treatments offered.
With gentle thoughts,
Posted 14 December 2008 - 01:14 PM
Posted 15 December 2008 - 01:28 PM
I was actually afraid I would not be on here for a while (if at all).
MCINM: I am so sorry to hear of your Mother's problems with G.A.V.E. I have suffered with this condition for many years. I turned 60 years old in November ~ and I underwent surgery last January to remove a portion of my stomach that was bleeding (slow bleed). I think the surgery was very difficult for me and I was in fairly good health (no heart problems etc.). I lost 35 pounds and was in the hospital for about three weeks. I also had a problem after coming home and ended up back in the hospital for another week. I too had many transfusions and endoscopies with APC (Angon Plasma C....laser treatment). Unfortunately, I had a small spot at the very top of my stomach also. I was told that they would have to keep an eye on that small spot. In November, I had that spot lasered and that was not successful at all. Today I saw a "stomach specialist" in PA and had the endoscopy with APC once again. I have no idea if this will work and I don't think anyone else does either. BUT I did like the doctor ~ he at least sounded hopeful. I have to get an iron infusion, blood work every two weeks, and return in six to eight weeks to have the procedure done again. This doctor said, "I think we can get this under control." In November I was told, "There is nothing more I can do for you." SO>>>I'm feeling rather good at the moment.
Please try to understand if you Mom does not want to have the surgery ~ it is not easy. I'm not at all sure what I would be thinking at age 73, having to go through all of this. My thoughts are with you both.
Please stay in touch and stay positive!!
By the way, where does your Mom live?
Posted 17 December 2008 - 10:01 AM
I am so sorry to hear about all the treatments and surgery that you have and I really appreciate you sharing your information with me. It sounds like you have gone through a lot. It is interesting that you had part of your stomach removed and they are still doing laser treatments. I wonder if my mother-in-law should just keep with the treatments because I don't think she could handle the surgery. The doctors told us this week that she has bile coming up in her stomach that ruins everything that the laser treatments fixed so you think they could find a way to take care of the bile. My mother-in-law lives in Atlanta, very close to me and my husband. Thanks again for the information and I hope you heal soon. I might ask you more questions later if surgery turns out to be the only option for my mother-in-law.