Does anyone have a DX of the rare ‘GAVE Disease’ (gastric antral vascular ectasia) associated with your liver and portal hypertension?

[JennerLayne]

Had an endoscopy recently and had an esophageal web removed, along with a dilation to stretch the narrowed area. A biopsy of my stomach revealed GAVE disease or watermelon stomach (not to be confused with Graves). Apparently, blood vessels dilate in striped patterns looking like watermelons and cause bleeding. I’ve also been diagnosed with severe Anemia due to this bleeding. Can’t find much online and am wondering if anyone has personally been through this process. Continued bleeding? Portal hypertension issues? Varices? Stage of liver disease (AIH, PBC or other)? Doctors are all vague about treatment, prognosis, etc. Thanks!

[Caroll0605]

Hi, my husband was diagnosed with GAVE several years ago, and there is not much information anywhere about it. He also has decompensated cirrhosis, with varacies.My understanding is that the stomach oozes blood and in my husbands case necessitates blood transfusions regularly (every 4-5 months or so) because he becomes anaemic. He has had laser treatment (argon laser I believe) but this last time, last month he had radio frequency ablation which they hope might be better.

Sorry not much help, but if you need to know anything further let me know.

Carol

[JennerLayne in reply to Caroll0605]

Hello and thank you! That info helps and puts it in perspective that this may be a lingering disease for me which requires ongoing management. Now, when I see my Gastroenterologist soon, I can ask appropriate questions about the possibility of blood transfusions, trying laser or ablation surgery etc. Hope your husband is better since his last treatment.

[WaggyMamma]

Yes, I have it. Was taken into hosp 20mths ago with a blood count of 66ish. 3 bandings done. I've had 5 units blood but it seems to have settle around 100 & iron tablets top it up. Very interesting to see photos of my watermelon stomach!

MRI then found cirrhosis & portal hypertension & AIH DX followed. They think AIH has burnt out & I'm currently compensated (yeah!) I take 2 x2 omeprozole/day (morning & before dinner). I had a "top & tail" scope again in January & was recently sent a FIT (poo) test to do at home + bloods done yesterday. I'm hoping this means I'll be chatting to my Hep soon (6 monthly reviews).

I am careful what I eat & avoid spicy or overeating at this can be painful & bloaty.

I agree, very little info available. ☹️

[JanetH67]

Hi JennerLayne, such a late reply on my part but I've had GAVE as a side effect from long standing primary biliary cirrhosis for about 4 years diagnosed now (the GAVE that is); I've had PBC for 25 years.

I'm actually just out of the hospital today (flew bk to CDA from Fla last Monday) after another bout with melena (blood in stools sufficient enough to warrant an ER visit). They completed APC at ER in Canada (cauterization of the bleeding spots in the belly) and sent me on my merry way after 5 days admitted.

I've had about 10+ cauterizations now and maybe 20-30 scopes. Have also had a past variceal bleed that I survived! 🙌 The GAVE will be a long standing issue in most that develop it due to an underlying liver disease, as the underlying cause must be rectified first before the side effect can be resolved. Logical right?! I guess in some folks the GAVE will continue unfortunately.

I would suggest the best thing is to have a plan or cut off set of criteria upon which you base when to visit ER or not with GAVE bleedings. I used to visit ER every dang time, but that got old pretty quick when I'd spend hours in there and the Drs are just waiting to see if bleeding continues or self-limits (stops on its own/which it does most of the time w GAVE). I tend to now keep watch and if stools continue or worsen to blacker, tarrier then get to ER, and if my bleed resolved in a day (this can easily been monitored through stool colour) or two I don't go to ER. Everyone has a group of criteria that works for them when it comes to GAVE and symptoms and you'll find what works best for you.

There are usually very precise levels the med team will allow your hemoglobin levels to drop to as well, before they will act on a transfusion. Unfortunately they don't just top you up if you're feeling tired or drained out due to the slow bleeds (sorry to be a Debbie downer).

Please feel free to ask me any questions. I know I have more experience with GAVE than a few of the Drs I saw this week lol, bit I'll try to answer anything I can to the best of my knowledge.