Any advice

Hi, about 2-3 yrs ago, my husband started feeling unwell with variuos symptoms, - fatigue, stomach/abdominal/back pains, nausea, itchy back/stomach, the list gradually lengthened. He was diagnosed with Diverticulitis about 18mths ago. Few months after he had a Fatty Liver. Last December was diagnosed with Primary Biliary Cholangitis after having awful time with terrible symptoms, it was quite scary actually. He was then Prescribed Ursodeoxycholic Acid.

The Urso seemed hit the spot for a while, symptoms eased for few weeks. Then different ones would appear, visited doc few times, he suggested search Google which I had😱 as he wasn’t clued up on Liver problems, and also to contact Liver Nurse.

In between all this blood tests were taken and waited weeks for results. After phoning for a blood result and hoping to make an appt for Liver update, husband was told that he was in the queue for that but that Cancer patients come first.

Because of ongoing stomach issues, through doc, finally got appt with Gastrointerology consultant. Reading from notes it was thought gut problem was from Diverticulitis. He was put on Fybrogel. And waiting see dietician, again. He was sick as a dog while on it so stopped after couple weeks.

Liver bloods are ok apart from one which is borderline. So he’s supposed get bloods checked more often.

Because of all this, him not feeling good, not knowing what stage PBC is at, ongoing symptoms and no one to discuss it all with, that’s why I’m writing, in the hope that someone out there can give advice or just listen, or just something!!

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Hi Bobby440

Sounds like you both have had a time of it.

Unfortunately good bloods with PBC dosent mean no symptoms. Urso is used to slow down the attack but many of us still get the symptoms, good days and bad days. Also,with his stomach issues has he been tested for celiac? Its closely connected with PBC sufferers, not all have it but there are a few.

If you havent already join the PBC foundation,it is full of information and help.

Take care.

Angela

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Hi, thank you for your reply, celiac has been ruled out. I will contact PBC foundation. Thanks

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They are a great , full of information and great people.