Unwell: Hi all, I’ve not been on here... - British Liver Trust

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Neph profile image
Neph
7 Replies

Hi all, I’ve not been on here for a long time. I have been suffering quite a lot the last 6 months. I have terrible pains in my legs, bones and muscles. I’ve been telling them I have pain in my liver and that I get confused a lot. My consultants keep telling me that my levels/bloods are fine. I recently had a sigmoidoscopy and endoscopy. My liver consultant came and spoke to me after the procedure had been done, and told me that I have varices (which are being banded tomorrow) he also said that I have portal hypertension and that my tipps is not working, hence the varices and portal hypertension. He also said that I have polyps in my back passage. So now the plan is to have the banding done, polyps removed and to have my tipps widened. What I don’t understand is how come the tipps and portal hypertension hasn’t been picked up from all the regular test that I have done. I.e bloods, ultra sound scans, mris with contrast. I am also suffering from severe depression which I am getting help with. But I just feel between my gps, consultants and other medical professions that they all keep passing the book to each other and nothing gets addressed as such. I understand that I am not there only patient, but I’m struggling to understand why they feel it to be appropriate to live like this, in this much pain. I understand that they can’t just magic a cure/tablet for the pain, but I feel like they are saying to me well your bloods are fine so it is not related to this condition so it’s nothing to do with them. Had anybody had any of the above procedures? I’m ok with having the endoscopy again tomorrow, but I’m unsure about the other procedures. Will I have to be admitted as an inpatient, will I have a general anaesthetic, are they keyhole procedures? Feeling very sorry for my self at the moment.

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Neph
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7 Replies
Howard_Sherwood profile image
Howard_Sherwood

I fully understand your low mood and anxiety at the moment prior to the various procedures that you will be undergoing. It could be that the stent used in TIPPS has failed and as a result your portal hypertension has increased. This may have occurred since your last scans which is why it hasn't shown previously. Banding of varices is very common in liver disease (directly related to portal hypertension) and is often done at the same time as an endoscopy – I had six done at the same time several years ago. Having undergone one unpleasant endoscopy I now always request both sedation and throat spray.

Good explanation of TIPPS procedure:

uhs.nhs.uk/OurServices/Radi...

Whilst undergoing this specialist medical treatment in hospital (either as an in-patient or out-patient) your care is the responsibility of the consultant. All your queries should be addressed to your designated consultant. If you are unhappy with their care, speak to your GP or whoever referred you to hospital.

I hope this helps and that your treatments go well and have the desired effect.

Neph profile image
Neph in reply toHoward_Sherwood

Thank you for taking the time to read and respond to my questions. All help, advice, and opinions are very much appreciated.

Tangointhenight profile image
Tangointhenight

Can't offer much advice but wanted to say I hope it goes well and you feel better soon

Neph profile image
Neph in reply toTangointhenight

Thank you very much

Isabelle2 profile image
Isabelle2

Hi

I’m sorry you are feeling low. I can’t help but hopefully once they’ve done the procedures you will feel better. Ending +++ thoughts

Isabelle

Isabelle2 profile image
Isabelle2

Sending +++ thoughts!

Neph profile image
Neph in reply toIsabelle2

Thank you for your support. My low mood has improved since I have posted on here. It really does help knowing I’m not the only person suffering.

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