Hi folks,not posted in quite a while.....Had endoscopy done Friday gone, long story short.
Altered blood was found in my antrum.
Unfortunately they had to band 4 varices,they were large,but said no sign of bleeding from them.
Several other small varices ,so another endoscopy in 6 month.
Portal hypertensive gastropathy, with no bleeding. Vascular lesions
Watermelon stomach.stomach lining friable, Gastritis, erosive with no bleeding.
They didn't even go through the report as running very late.
Only when got home read it.
Ive contacted endoscopy department, hep consultant, liver nurse, gp....all to no success with a reply as of writing this. Medication, told to keep on current dose of carvedilol, and to up my lansoprazole to 30 mg twice daily.....I'm already on that dose.....someone didn't read my Current medication list I gave them!!!!!
I'm just a little concerned, as to where the blood has come from,as everything seems to say no sign of bleeding..... but some was found.
Ive not noticed that I'm passing any blood from either end....sorry if to much info!!.
Thanks for reading. Just any ideas really.
My best. Chris
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redpoint72
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What a mind blowing result. I think (in my non medical professional way) if they've managed to band varices then is that possibly where blood had come from?
Have You tried ringing your Consultants secretary?
If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
I'm sorry that your in limbo regarding meds and current situation regarding the endoscopy and banding
May I say your really brave !! I have dodged all my endoscopy since 2017 , I had a bad experience and that was with so called sedation .. I just can't go thru having them .
How are you feeling? I do hope you find answers Chris, I know if it were me I'd be phoning the gastro team and my hepatologist secretary .
Hello Linda love..Great to hear from you. As mentioned before, I've contacted all who I should contact regarding the endoscopy and blood,im playing the waiting game for some sort of response. I will try again tomorrow 🤞. They are so busy.
How am I feeling???.I have been feeling extremely tired of late,also Fed up to the back teeth love......ultrasound is months behind.
If no response tomorrow, im leaving it,what will be ,will be.
I can't keep pestering them, as that's what it feels like.
This endoscopy was not a good one at all.....I didn't do well.
I very much hope that your settled in your new home? And the 3 amigos 😺!.
Hello Linda.Thanks for taking the time to reply love.
Ive spoken with my liver nurse not long ago....she is great though,very reassuring....so feel abit more settled since then.
She has seen the report,so has mentioned it to my hep consultant.
She thinks the blood has come from my stomach lining, to do with the portal hypertensive gastropathy....I had a big bleed from that nearly 2 years ago.....so similar, just a smaller scale.
There isn't alot they can do apart from up the dose again of lansoprazole.....I saw a dietician 2 years ago,about certain food triggers.....so I have to steer clear of certain types of food. Only bland foods really!!!!
My Ruby is doing ok thanks......its certainly never quiet with a siamese in the room!!😆.
I'm glad you've settled in your new place,,thats worth alot,just to feel settled.
Oh I'm so pleased, you have some answers eventually, your consultant secretary seems a but like my one, she's very helpful and takes time to answer you .
..
So not really much they can do then as opposed to your diet and meds , but good thing is your mind must be at ease today, especially on how worried you were regards to where the blood came from
Aww I'm happy to hear Ruby is good 👍, just love siamese cats ,I've always wanted a burman or Egyptian mow lol ..
hope you get the answers soon. Your report is quite detailed so that’s a positive. Ours tends to be much less detailed, just whether varicies found and banded or not.
I’m sorry you are going through all of this and not supported satisfactorily from the medical side. While I don’t have advice for you because I don’t know enough I would say BE A PEST! You need answers on this long journey you’re on. The medical people would be very persistent I would imagine if they had to go through what you are to get answers.
I experienced a terrible endoscopy too and I really don’t want to have another.
I'm slowly getting somewhere, it just takes a while to get to speak to the right person!!.
Thanks for replying,its good to know someone is out there,especially if your single like myself,it can be a lot at times to cope with when your on your own,no one to have a cuppa with.
My mum is just out the hospital from getting two varcies banded , but has been feeling really tired , pain in stomach , not sleeping , pale , itchy skin and only when they done blood tests they found out her blood count was 49 then got taken into hospital, mum was asked if she had been passing blood , and she didn’t think so as she had never seen any visibly blood but her stools were dark , so she was told that she could of had a small leaking bleed in upper gastro … and by the time it passes through your body it comes out black, maybe something to keep an eye on , or get bloods checked , as you and my mum sound similar . How much carvediol you on , and mum on40 mg lanzoperazole twice a day and Spironolactone for portal hypertension and enlarged spleen. Take care and hope u feel better soon .
Hello love,I hope mums feeling a bit better,she is lucky to have you around. I responded to your post the other day didn't i?. My carvedilol dose is 12.5 mg daily, so my liver nurse,is wanting to up that,she needs to clear it with my hep consultant.
I should be receiving blood cards in the post in the next few days, as she was wondering if I may be anemic again......so bloods will be taken in the next week or so. I couldn't see any sign of blood loss at all,but I suppose it doesn't have to be a massive amount.
Hope you get your blood tests done soon a as nd get the results to make you feel better and yes you may have never noticed the blood …hope things get better for you to .
Hi Redpoint, it would be rare for the endoscopy team to go through in much detail the meaning of any results from your endoscopy. They may go through a summary of it it but usually they'll let your own consultant complete the assessment with regards to what the results mean for you and whether any changes in medications or management are needed as a result. I'm guessing once your consultant gets to see the report they'll be in touch if anything needs changing before your next appointment. Or, if not, they may just wait for your next clinic to go through them with you.
Just looking at what you've written its good that they didn't see any evidence of bleeding from the varices in your eosophagus. Clearly the presence of large varices that needed banding will be of note, but if this is not a change from previous then it may not be as significant a finding and may not necessarilly lead to any change in management.
The report makes several remarks about the lining of your stomach, including the phrases friable, watermelon appearance and vascular lesions etc. All of these things can lead to some blood loss. However, this isn't necessarilly the type of drastic blood loss that comes with say a burst varices. Its more of a gradual weeping sort of blood loss that comes from say a bleeding ulcer or from something that may have just scraped the lining of your stomach. Vascular lesions include things like ulcers. They clearly didn't feel, despite the blood, any emergencency intervention in addition to the banding was necessary, probably due to the fact they didn't see any active bleeding at the time. So that at least is a good thing.
If any of the issues above are new then these will be flagged to your consultant and I'm sure they'll be in touch if anything does need to change.
As you say stomach lining is not to good,but they are limited with what they can do,I did have a massive bleed nearly 2 years ago, ulcers caused by portal hypertensive gastropathy, which is cirrhosis linked. I spoke to a dietician, 2 years ago,so I'm very careful what I eat,as to not aggrevate my stomach, they are going to increase my lansoprazole dose,to try and prevent things getting any worse. as you say,it was good that there wasn't any active bleeding seen from anywhere,but obviously altered blood there all the same.
To be honest,they have usually said quite alot after my endoscopy, and I've had quite a few now ,I've lost count!!!!
They were just so rushed of there feet,but that doesn't stop us worrying about it.
hi im sorry to jump on your reply but could I ask when you say you had a massive bleed, was it blood from back passage, Iv had a 3 day bleed in April then a positive fit test and had my colonoscopy on sat but that was clear thankfully but still in the dark as to where it came from, list a large dark blood clot too and need to find where this bleed has come from wether it could be from my upper gi thank you
so very sorry to hear that, I had a colonoscopy as passing bowel blood thrn large clot, so had to do a fit stool test which was positive resulting in a bowel colonoscopy which was clear so really can’t understand where all the blood has came from wether it be my stomach or oesophageal
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