Last week wasn't fun. I had recently read the book by The Reverend Richard Coles "The Madness of Grief"- most unwise and I don't recommend it. His husband died from chronic alcoholism and a bleed. On Wednesday I started throwing up a lot of blood. Was on my own, terrified and convinced I was dying, called 999, ambulance blue lighted to me very rapidly and blue lighted to Stoke Mandeville who were amazing and I was banded under General within the hour by the senior consultant there. I was in for just under a week and was well on the mend after two days. I have follow ups to come
My question is- how common is it to have more than one bleed as I am understandably completely paranoid?
Written by
theoldboiler
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Unfortunately it is possible to have more than one bleed (though my hubby was fortunate just to have the one massive one). His doctors instigated an aggressive banding regime and he had 42 varices banded over the space of two years - going every 5 weeks or so for an endoscopy. Since 2014 he's been having an annual endoscopy only and no further varices have formed that could bleed.
I hope you have gone under the care of a hospital consultant for all your follow up and continued care.
Bleddy Hell Katie - that's a lot! Yes, he will continue to look after me. I have another endoscopy in 4 weeks as there are definitely more varices there
Hubby had his latest endoscopy this week and no further varices were found in the lower part of his oesophagus - he has some higher up but they are safe from bleeding. Because his liver has been stable now for some time and he's had no further banding since 2014 they are talking about reducing his endoscopies to every two years which will make hubby do a happy dance.
Katie
Hi,
We are sorry to read that you had a variceal bleed. Your consultant should be able to advise you on the risk of more bleeds as they can explain the grade of varices and how many bands they placed etc.
It is positive that the team are planning to re-scope you in a month, we would suggest that if you experience any signs of bleeding before then to seek out emergency medical assessment.
Read my history!!!!!! I lose blood every single day in volumes Yes I am anaemic, yes I have all symptoms associated with liver cirrhosis, but there is little point (for me), going to A&E as I just get told (after long, long waits), that there is nothing they can do for me.
After nearly 4 years of trying to understand this bleeding problem (and seeing various consultants), another Consultant, from a different department, wrote a letter to me, to inform me that my bleeding problem was down to a disorder called ‘Chronic Thrombocytopenia’ in addition to the Cirrhosis Please note - no clinic interview, no tel consultation, no person with whom I could have a discussion about this!!!!! (Not an unusual scenario in my story).
So, having no-one to discuss this with, my only recourse was to look at Dr Google!!!
On this site we are constantly encouraged not to go down this route Are there any other options?????
As you know I really feel for you as we have had many conversations about each other's conditions!! You have and are going through so much and NOTHING has been done to help you. The treatment you have had is appalling. Thinking of you as alwaysAll my love Lynne xxxx ❤️🤗💜🤗
First and only symptom I had of liver disease was vomiting up nearly all the blood in my body causing a stroke, I then had to back for regular banding and took propanolol for portal hypertension, 2 years later it happened again but as I knew what was happening was treated much quicker.As you have had a variceal bleed you will now be monitored and should be going for regular endoscopy, mine were monthly for a while.
You can also cut down the risk by stopping alcohol, eating a healthy diet and regular exercise.
I don't drink any more. Exercise is limited but I try and do some every day. Diet has always been healthy. Thank you for the help. Next endoscopy will be soon
Thanks Hilary but I’ve never drunk alcohol. My source problem is NASH. I only weigh 8 and half stone and I cannot exercise due to serious mo vilify issues. Regarding stress - as most medics have put most of my problems down to Mental Health (in often arrogant, patronising ways), I am now in fighting mode!!!! After years of being a wallflower putting up with this nonsense, I have, justifiably, changed my strategy, and I will no longer keep apologising for my existence.
I do not presume to judge the motives of others - I merely explain mine. All of us need to be cautious in our assumptions of others’ motives, as I am with you. I really am sorry for your experience and hope it never worsens for you. Good luck xxx
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