Bowel issues and Itching

[CBCB]

Hi I have had PBC for about 9 years. Two uestions for everyone. 1. Has anyone experienced bowel issues requiring a bowel resection and Ostomy?

2. Just recently I have started to experience itching. Normally it has a fairly nasty rash with it and small hives. Is this the experience of others?

Thanks so much!

[Njh1975]

Hiya I was diagnosed in Jan this year after nearly 18 months of itching and tiredness, mine is always a rash with little hives it always seems to appear in the same places too which is mainly my hands and arms sometimes my feet get affected. I also get general itching just about everywhere, it's not normal where by you scratch and you get relief, the itching with PBC is quite painful and damned annoying it just doesn't let up. Not experienced too many issues with bowels so can't help with that.

Wishing you well

Nicola

[liver-bird]

Hello - I developed bowel problems after my PBC diagnosis 3 years ago involving pain and diarrhoea but the symptoms stopped as soon as I stopped eating gluten. Am currently being tested for Coeliac Disease which is another autoimmune condition.

Like you I experience some itching accompanied with a lumpy rash. This is mostly around my ears and head. I have noticed it is worse if I have eaten chocolate or sugary foods. I do not take anything for it as I can manage it at present and am hoping it won`t get any worse.

Best wishes Diane

[Cstar1079]

Hi! I do tend to have bowel Problems not sure if it's related to PBC, and not nearly as bad as a bowel resection. I have a lot of pain, constipation, loose stools, and when I have to go I HAVE TO GO! There is no holding anything. I also have the itching, it's really bad at night time. Usually my back, face, head, legs, and feet. Who am I kidding its EVERYWHERE. The Urso seems to help a bit though, if I accidentally miss a dose I have scratches on my body the next day from the itching. Idk if this helped you at all good luck

[CBCB]

Thanks everyone for your replies. It's good to have a forum for us.

Best to all.

[nickiwj]

Questran sachets I found was good to help the itching. It's strange though as at my early stage dignities of PBC when my bilirubin wasn't that high, I had dreadful itch. It felt like under my skin was on fire. Nearly 10 years on, my bilirubin has peaked over 100 and I have zero itching - you would think it would be worse 🤔

I am being listed for transplant once I move house (early August) after having my recent assessment outcome decided.

Nicki 💞

[PatriciaHebrides]

I had bowel problems for about 20 years- various investigations but no cause found. 5 years ago I was diagnosed with PBC after several years of itching.

3 years ago I discovered that not eating bread ie wheat and gluten my bowel problems stopped. I was tested for Coeliac disease - negative result, I am just intolerant to wheat and/or Gluten. I can eat for example the odd biscuit and have no problems.