I was in Hospital for a week over Easter..I thought was told it was Varices but it was PHG (Portal Hypertensive Gastropathy)

[Gerbera01]

I am out of hospital, had all Varices known to man double banded, and 3 blood transfusions. I saw my Gastro specialist this week and he informed me that NONE of the varices had bled, it was PHG! He also confirmed that was the same issue the last time I went into hospital a year ago! So not one varice has bled in me, they banded them just in case they do try and bleed. Have any of you had this bleed before? Who knows how long it was bleeding for before I noticed the symptoms which are, I believed to be consistent with varices but weren't that at all, so that's twice now. Am I an odd one? Curious to know if this has happened to any of you? I hope not! All they have done is increased the daily nadadol beta blockers 80mg from 40mg. That makes me feel even more fatigued, but I have to take em!

[AyrshireK]

My husband had 7 burst varices when he was first diagnosed. At his first endoscopy they banded all 7 plus also diagnosed portal hypertensive gastropathy of the fundus. PHG is changes to the stomach lining leading it becoming more friable/fragile. He's never been diagnosed with any bleeding from his PHG but has subsequently had 42 varices banded.

Hubby isn't on any beta blocker because a trial of carvedilol caused him all sorts of toilet issues and his liver specialist said it was no good after he'd already suffered a massive bleed.

Katie

[Gerbera01 in reply to AyrshireK]

Thanks Katie, there isn't anything on this forum about PHG, that I could find anyway. I might just be the oddball who has problems with it! 🤪

[Bootandall]

Hi Gerbera01, I'm another oddball so don't feel like you're the only one lol. I was diagnosed with PHG after endoscopy, I also have mild varices. No bleeds, knock wood, but I am taking a beta blocker (metoprolol). I was hospitalized while I was being treated for Hep C, before my PHG diagnosis, with unexplained hematuria, this was on the weekend of course, and stopped before anything else happened. While no one has ever linked the two, I think it might be related. Still trying to figure it out, seems to be a mystery.

[Gerbera01 in reply to Bootandall]

Hmm, well I'm pleased I have company with this! Atleast your PHG hasn't bled. Bleeding from PHG musn't be all that common with chirossis? Well, I can't seem to find much about it! It seems that Varices is the common denominator for internal bleeds and not PHG. I have both, but never bled from the varices! Like you, knock on wood! Either one is not nice to have! Thanks for your reply, i'm in good company!

[Bootandall in reply to Gerbera01]

Well they did give me antibiotics and said I probably had either a urinary tract infection or a kidney stone that passed, and either way that was the treatment for both. I don't know why I didn't remember that until now, sorry, this is in regards to the hematuria. I was admitted through the emergency room, which was a zoo, and I had a scan but I can't think what kind. Had back pain and was dehydrated often during this period, and work was just becoming hard for me. So does the portal hypertensive gastropathy bleed, I thought it might ooze a bit, sorry, not a nice picture. I've never heard the word friable before, so still trying to figure out what exactly is happening. At first I thought it meant the tissues changed, like in Barrett's, to protect the stomach lining, but pretty sure that's not right. My impression is that PHG is relatively rare.

[Gerbera01 in reply to Bootandall]

I dont think antibiotics gets rid of PHG, it's there to stay...i think!? It is caused by Portal Hypertension, again, pressure on the blood capilerries slowly ooze blood into the stomach. I was really tired, still am! I have no idea how long it was bleeding for? But my bloods showed a very low iron count for a while in the lead up to going to hospital. It shows up as patches in your stomach, with a mosaic pattern, I don't know much more about it. The Gastro just said I had to take a higher more frequent dose of Nadadol (beta blocker). I used to be on Metroprolol, but he changed it. So because of the large dose, I'm feeling even more fatigued, exhausted at work after just a few hours, but that is also a combo of my iron levels still on the low from the bleed too. Just have to carry on, boots and all along with this mysterious PHG!

[Bootandall in reply to Gerbera01]

I was taking the beta blocker before they diagnosed the PHG, didn't know that it could cause fatigue, that's all I need. What kind of work do you do? I lost my appeal for disability and need to find a job. I'm afraid I won't be able to keep up, but I'm going to have to get with it.

[Bootandall in reply to Bootandall]

So Gerbera01 you are saying that the PHG caused bleeding so bad you needed transfusion?! Can I ask you how did you know you were bleeding? I know I wasn't really clear, what happened to me was l started bleeding bright red when I peed, so I went to the emergency room. It was a weekend, and no specialists were on call, and by the time I saw the doctors six hours later, the bleeding had stopped. I'm surprised they hospitalized me at all, the scan showed nothing, but I was taking treatment for Hep C. I expected the hospital to contact the liver doctor, not sure if they did, they gave me antibiotics and sent me home the next day. I was only diagnosed with PHG after a subsequent endoscopy. I am super impressed that someone was available for you at Easter, surely it was a drastic measure to get out of cooking for the holiday! 😉

[Gerbera01 in reply to Bootandall]

Sorry about the work situation. Change career work from home? There is an increase in jobs whilst working from home. Or find part time work you can manage?

[Bootandall in reply to Gerbera01]

I will be doing just that, thanks again for the advice!

Can I ask, how did you know you were bleeding from PHG? I'm very worried that will happen to me.

[Gerbera01 in reply to Bootandall]

Yes sorry, was getting to this. I didn't feel myself from the minute I woke up. Had a hot spell, temp spike at work, and I felt tired. Got home, ate, felt nauseous. Stood up, nearly toppled, felt faint. Went to the loo, and as I knew something was happening I sort of pushed a tiny bowel motion out, black Tarry, I sign of hemmoraging from varices or in my case the PHG. Same symptoms as varices when they bleed I believe. That was that, hospital etc. I had 3 or 4 blood transfusions over a few days. Yes I was lucky to receive gastro specialist help on Easter, they go from hospital to hospital when staff are low on holidays. But please don't get worried about yr PHG bleeding, I think a lot of us with chirrosis that have varices also have PHG, it's just that mine bleeds! It doesn't seem to be common. So forget about it, carry on, keep healthy, you know, good diet, exercise, plenty of water, with a good dose of smiles and laughter!

[Bootandall in reply to Gerbera01]

Thank you, l will carry on, same as all of us here, and make the best of things. And I'm very sorry you had to spend your Easter holiday in the hospital, no joke, and that everything is going well for you now. I don't mean to beat the idea to death, l was just wondering if the hematuria might have been caused by the PHG, in hindsight, but of course there may be no scientific way to say for sure. I do not have any history of kidney problems or UTI. It does seem to be an "unknown" sort of condition, with not a lot of information exchanged about it. I'll be sure to look out for black, tarry stool or coughing/vomiting what looks like coffee grounds, classic signs of internal bleeding. We live very near the hospital, so that's some small comfort. Take care 😘.

[Gerbera01 in reply to Bootandall]

Well, I don't know about the hematuria sorry! But it didn't seem to hang about with you. So fingers crossed it was just a one off. You get all kinds of crazy symptoms and ailments, and unfortunately there isn't always a straight forward answer as to how, why and what?? Thanks re Easter, yeah I had a pity party about that, timing was terrible. Had my Easter bunny when I got home. Don't be worried, you are doing really well. 😊

[mrob0823 in reply to Bootandall]

I have mild varices (grade 1 small) and also PHG. What I can't figure out is the correlation between portal hypertension, varices and PHG. I would think the severity of PH would affect the severity of varices and PHG but that's not the case for me and sounds like you. Did your doctor ever provide insight?