Hi I would like to ask if anyone suffers from really annoying stomach issues? I have PBC AIH overlap. I take urso 500 mg twice per day, prednisolone steroids, and mercaptopurine.
I admit to not taking the urso as I was told to by my consultant but it tends to bloat me out and make me feel uncomfortable. This past three weeks, my appetite has vanished, I feel more tired, I have acid reflux, feel as if something is stuck every time I eat, have really bad burping after eating, am very constipated and feel nauseous. I have also started itching, at least I think it's related. I thought the itching was due to a bite I have had. It feels as if bugs are crawling on my body and worse at night. I feel at the moment Iam alone in this and remember about the forum which I have not been on in ages.
I am due to have bloods done and will make an appointment to see gp this week, but my consultant said she would see me in 12 weeks at my last appointment which was on the 2nd August. I wonder if anyone else can relate to this; and also could this be my condition moving forward.
What do I do about the eating problem. I have been unable to eat for 3 days this week, I am just so fed up with it all, this itching is new to me I only experienced it once before and that was just after diagnosis in 2012.
Also do you recommend I take the prescribed dose of urso....and if so will the bloating etc calm down. I have no idea why this has started to play up now. The only thing is I am under a great deal of stress am caring for a friend who is terminal. Wad told by consultant that I couldn't do care work any more due to infection to me because due to meds for AIH I am immune supressed, I also have no help at home and my husband hasn't got a clue. Am tempted to tell him he can leave because I have something that can't be cured...he is 14 years younger than me as well.....It is so difficult for me at the moment and I have no idea what to do next.
Thank you for your help
xx conniefused.
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Alley27
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All these are symptoms of pbc I've had most of these problems myself before starting medication, I'm taking urso and questrian, I take 250 mg urso 3 times a day they tried increasing my dosage but didn't work out and up to 4 questrian drinks per day. I've had the bug bite itch and it's awful it will drive you crazy questrian should help and hopefully the urso will help with your other symptoms. When your having the itch try wearing 100% cotton as this seems to help too. As for eating little and often is all I can say its hard when everything tastes like cardboard but maybe try juices/smoothies?
You sound like your having a terrible time in general and I really hope things start to improve tackle one problem at a time and I hope the info/advice helps x
So sorry to hear of the miserable time you are having.I have PBC and Sjogrens and pancreatic inflammation,gastric reflux etc.I am on Prednisalone and pancreatic enzymes,and I went on Ursofalk 2 years ago and had the bloating initially and indigestion.I started on 500mg once a day and now I am on 10000.I found it was a gradual process to build up the Ursofalk over a few months and some days lower dosage.Now 2 years on I can honestly say it has made a massive difference to being able to eat and itching is improved also.I find it best to take it at breakfast time and lunch and avoid evening.
I also began a regular dose of probiotics.The good ones can be quite expensive and you can't get them on prescription but I find the Boots own make is excellent and you can get them 3 for 2.They also help with the bloating.Maybe try to eat something nourishing little and often and keep to low fat.When my pancreas flares up I eat porridge or skimmed milk rice pudding and stewed apples till it settles
Everyone is so individual so those ideas might not suit you but 8 honestly feel the Ursofalk is good but very gradual build up to the full day.The doctors tend to weigh you and tell you what you need and start on the full dose
Sorry too about the other stresses in your life but if you were feeling a wee bit better in yourself with your digestion issues and appetite things might feel a wee bit brighter.I get so down about everything when I am going through a bad spell health wise.
All the best and hoping for improvement for you. X
I recently read that in-patients to hospital are given a probiotic drink daily in their convalescence. Although I think it could be a good thing, I don't reckon much of the fact that you are sent home on the advice to buy this very such brand (that I know is expensive)!
Hi Connifused, I am on 500mg urso twice a day too, I too was bloated and badly constipated but my gp put me on lactulose which has helped with both issues and also helps a bit with the brain fog!! For the acid reflux I take omeprazole 20mg once a day. I would take your urso twice a day and ask for lactulose and see if it helps
Hi Guys and thank you all for your replies. I have been given some sound information. So this is my PBC. It's difficult for me because I also have AIH as well. I am going to buy some readybrek as porridge is too rough for me at the moment. I usually use semi skimmed milk, but will try skimmed, and I will also buy in some low fat rice pud..I do like rice pud.
I would like to know if it is ok to take questran with the urso and can I get it on prescription...and yes Lindz....everything does taste and feel like cardboard....I take omeprazole 40 mg twice per day as it is and I want to reduce this because our stomach needs some acid to digest food, what if omeprazole is not really that good for us.....this itch is a nightmare though...has it got worse for any of you if you are under stress? last night I at least got 3 hours sleep because I had a cool shower, I have turned the radiator way down in my bedroom and put on old fashioned cotton pj's lol....
Please bear with as am trying to answer everyone. I understand eating little an often might work but I don't eat unusually large portions, I suppose can work on that.
cuttysark made a really good point about taking urso through the day but not in the evening..I may try two in the morning with breakfast, one at lunch and one around 6pm.
Thanks sing sing for the info re lactulose. I am going to arrange bloods for tomorrow and will ask my gp for lactulose.....we all need to go ya know lol.
As for other stresses in my life, I am going to visit the person who dragged me in to being a carer today and am telling her I can't do it any more as I don't want the responsibility of caring for someone else when I need to take care of me.
PS conniefused. You are not alone with AIH/PBC as there are quite a few on this site I've seen. I only have PBC as you probably know by now and only take the urso.
The Ready Brek or other instant porridge you make in a bowl with milk, try buying a bag of flaxseed or millet that is flaky and putting that in with it to add further nutrients. Holland and Barratt sell a good one, might seem expensive but it does last and you keep it in the fridge after opening.
Another good one to buy is ground rice, Tesco or Sainsburys sell their own brand that I tend to buy. This can be used as a breakfast or pudding. You simply make it in the pan by slowly adding milk and it goes thick within short space of time and resembled semolina (wheat) pudding. If you are feeling adventurous you can try adding cocoa powder to either the Ready Brek or ground rice. I sometimes pop cocoa in my Ready Brek or supermarket equivalent. I prefer adding my own to make it chocolatey due to the fact you get control over the sugar content of which I do not add any.
Hello conniefused.
I think stomach issues can be prevalent with PBC and moreso once we are taking urso. I go through periods where I don't feel that hungry myself and do find food a turn-off a lot more these days. I put it down to being almost 50 and a natrual occurrence as we get older. I know I am apparently going through the peri-menopause now and don't seem to feel one of the symptons I used to do just as Istarted my monthly cycle, a bit of bloating and a bit of temporary weight gain teamed with a good appetite for a few days so I can't stop but wonder if it is due to hormones too.
I do also think that urso being a form of acid can cause temporary problems for majority of us on starting it but I think that with urso, as I found on starting Dec 2010 you have to persevere and keep on taking it and with me my bloating and heartburn I did suffer vanished within 3mths on urso. I have since suffered urso when receiving a diff pharmaceutical co's urso and recently due to the 300mg urso being withdrawn, the new 150mg I now take did cause heartburn again temporarily.
Now the itching you are describing definitely sounds like PBC related. That is how I feel like at night, normally start by 11p.m. and then it lasts until 5a.m. I explain my itching as someone falling in a clump of nettles or even being stung at random by wasps.
Don't despair as the itching is apparently nothing whatsoever to do with the progression of PBC. It's said to be how the used bile is handled in the system and with PBC due to having a compromised biliary system, that's why. I have the occasional night when I hardly itch and then some it is worse.
Regarding eating, the odd day where you don't eat much won't do you any harm, it's if it becomes persistent. Try eating little and often but also make sure it is of good quality and nutritious. For eg I'd rather reach for a banana than a choc bar/biscuit.
If you don't feel overly-hungry at lunchtime, try having a bowl of breakfast cereal, I do at times.
I'm struggling a bit at the moment due to taking a short course of iron tablets, they have been making me nauseous but that seems to have vanished in the last few days.
Don't get down if your next bloods aren't as good as you would like, I myself have bloods that go up a bit it seems certain times of the yr and then back down again at another time. I have also found that times when I have felt really awful, the bloods have been surprising in a good way but when I've felt on top of the world they've not been as good. You just never know with PBC it seems.
I think we all get down at times even after acceptance of PBC. I reckon it is due to the fact that it is there every day. Even tho' I try to get on and forget about it, at night when the itch comes, it can be difficult. Each time I reach for the urso, it is a reminder.
A good thing to avoid if possible is not to have too much fats in the diet, that can cause more stomach acid and more bile is generally required for digestion.
I tend to cut out any caffeine containing drinks after evening meal, red tea is good.
Hard as it is, try to focus on living your life and enjoying it otherwise the PBC will have one over you.
dear Connie I started taking urso capsules and started getting a terrible pressure in my chest and feeling bloated, then followed the most loudest burping one after the other, then being and feeling sick for days, once I stopped the urso it all stopped. They changed the urso capsules to medicine and also gave me omoprezole but the same thing happened, I felt at a loss as I knew the urso had brought all my bloods to near normal so it was keeping the pbc at bay. Anyway I came up with a plan, when I start feeling the pressure in my chest I stop taking the urso after a few days and a couple of burps, no more, it passes and I start taking the urso again. I figured missing the odd couple of days every couple of weeks is better than stopping altogether, I hope I have been of help and good luck and merry Christmas xx sue
Lots of good info from all the replies -helped me too! Just another thing about diet I was remembering.When my pancreas flares it is so hard to eat and I mentioned the rice pudding and stewed apples but another thing that has so helped me over the years has been pineapple.You would think it might be hard to digest but I find it excellent either tinned in its own juice or fresh as long as it is ripe.It seems they have some kind of enzymes in them that help you digest and even the tinned have it too.I have chronic reflux and have been on esomeprazole for 10 years but the pineapple never upsets me at all and when your mouth feels foul it is fresh and pleasant to taste.
Also a good point Peridot made about the probiotics yes they are used by the NHS and I am sure would help so many of us ,yet we are not able to get them on prescription unless you have pouchitis from a previous bowel re-section. My gastro consultant told me that and recommended I take VSL5 but would have to buy them myself.They were hugely expensive-like twenty pounds a week or so in the high dose I needed so that is when I discovered the Boots ones did the same for me instead.
Honey,STOP.BREATH in and out of a few minutes,Boy o boy lots going on with you Hun,sounds like you need to just stop . Take your ursodiol ,I think that would help you,eat just fruits and veggies and soups lean meats to start this will help you feel less bloated.drink plenty of water.Stress can make everything a whole lot worse ,tell you husband how you feel exactly,what do you have to loose,he may be more supportive than you think,if not just do your thing and don't let I'm bring you down.I think the itching can come and go,don't stress over it unless you just can't stand it anymore,good luck with everything,I speek from experience.
Hi Cecile, thank you for this...yeah loads going on, and to be honest I am knackered from caring for this friend, who does have her own family, and the itch is driving me nuts.....I will take the urso and hope the bloating stops...I like my fruit and veg but meat sits too heavy for me and hospital dietician said I need high protein diet as do all people with liver conditions. Also said I should try a gluten free diet....ok but that is expensive when on budget. I do drink lots of mineral water though.....stress, with me that's very high at the moment....but today I told my friend I don't want the responsibility of caring for her because I need to care for me. she has agreed to get outside carers which she would not do previously so that takes a lot from me, and I will tell my husband exactly how I feel about everything, I may even tell him to leave as this illness is with me for the rest of my life.
I also Have AIH, and a couple of other issues which makes things a little confusing...but I am ok. Thank you for your help, all of you, sometimes you just need to speak to like minded peeps.
New year looks promising, am going to volunteer at the well woman centre on reception and counselling; I also have a place on a business admin course, so I may be able to get back into part time work.
Thank you again
Hope you all have a wonderful Christmas xx conniefused.
Sorry you have all this pain..I have Pbc and fingers crossed I prity much eat as I used to be for being diagnosed..
If you still love your husband and he loves you.. You should not ask him to leave because of this condition.. You can if managed lead a long life.. With a few bad bumps in the road.. When I was first diagnosed I was only married 7 months and felt like you do.. I felt I don't want to hold him back he's young too and didn't sign up for this.. He was horrified I would say such things... In reality all I wanted was reassurance that he was OK with the condition.. Which was unfair as I wasn't and am still not. But we ride every little bump together.. In sickness and in health.
Hi all, I hope you all had a good Christmas, and thank you so much for your help and understanding....it has been very welcome and very helpful. I still have the itch but one night this week, 28th, I managed to get a decent nights sleep as the itch was much less. I now seem to have a pattern with the itch...it gets worse after 9pm no matter what I do, lasts until around 5am then, during the day it's not as bad...I suppose if you can get an idea of the cycle...you can plan around it....and if we get at least one comfy night; we can manage.
I am taking the urso, I would like to know if there is anything we can take for the fatigue as this is a huge issue for me as is digestive issues and constipation....I am going to see Gp about the questrian though as it might help my itch.
I do feel a little better since contacting you guys and hope this will continue....in the New year I intend to live my life and not let the AIH/PBC hold me back. I know there will always need to be life changes along the way, but that's ok. As for my husband, he did not pay any attention to what I was saying which led to a row where I eventually told him never again to ask me how I am feeling, then I don't have to tell him, and he doesn't have to feel sorry for me or have any kind of conversation with me about it...he seems to not care.
I am ok, and see things very differently since the chat with my hubby, at least I know where he stands in this matter and that I have decisions to make.
To all you wonderful people on here, xxx I wish you all a happy, healthy and prosperous new year.
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The Dreaded Itch 
Liver Pain - Due to medications or is condition worsening?
Pbc
Does anyone on here think that maybe the dosage per kilo for Urso is wrong and needs to be reviewed by those who do that? I do.
