Am I alone?: This may be a little gross to... - PBC Foundation

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Am I alone?

Jess5377
Jess5377

This may be a little gross to some but do any of you have really loose stools after taking your Urdu when u eat. It’s like my food goes straight through me and some days it feels like I will not make it to the rest room in time I get such diarrhea. Am I alone ? Also sometimes when I eat I hurt Like my liver is aching. And some days it is terrible bloating and gas.

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Yes ! I do have similar problem constantly. I have spoken to GP. had colonoscopy etc

talked about it at hepatology clinic but no-one is picking up on it.

You are the first person to put this on here, I guess it is not a pleasant subject to talk about but thought if I replied to you others might follow. Are you in UK ?

I think tummy issues can be part of PBC, I sometimes get this if I eat the wrong foods I don’t tolerate too much fat or wheat.

I had all the usual checks at the hospital and everything was deemed to be caused by IBS. ( nothing else could be found) Thus an elimination diet was followed with a dietitian, to find the offending foods and I do well when I avoid those foods.

However, any change in bowel habit must be checked out by your doctors , not everything is down to PBC.

Hi there

Yes I’m suffering the same thing, had the same colonoscopy and other tests. Just given stool sample to test pancreatic enzymes. They want say weather it ibs or anything else. I personally think it’s the uso.

I don’t have that response, and I am sorry that you do. Could something else be causing it? I would ask my med person .

I had this after no problems for two and half years, it went on for 3 months then I had tests and was told to stop taking URSO as I was having reaction to it. Speak to your Gp and see if it’s anything to do with URSO or not, don’t just stop taking it. Good luck

These are common symptoms so don’t worry to much, it happens to me then I’m ok for a few weeks.

That said it’s horrible when this happens.

Have a look at the PBC foundation

Patient information booklet

I’m sure it’s on the website

Www.pbcfoundation.org.uk

I started with this problem about 4 years ago. I was diagnosed with pbc a couple of years after and prescrbed urso. My bowel condition continued. I had all the usual checks and nothing untoward was found. I cut out dairy fats and some animal fats from my diet and it was successful ! My consultant then advised I take multi vitamins to help restore the diet imbalance.. hope this helps

You aren’t alone. I have my urso at night, when I need the toilet I tend to need it pretty urgently which can be difficult if I’m away from the house, it all started when I began taking urso so I’ve put it down to that. Eating foods with a higher fat content makes it worse so I’ve switched to low fat and this has helped.

These were listed as common side effects for urso:

headache, dizziness;

mild stomach pain or discomfort;

nausea, diarrhea, constipation;

cold symptoms such as stuffy nose, sneezing, sore throat;

hair loss; or.

mild itching or rash.

rxlist.com/urso-side-effect...

I had TERRIBLE gas and bloating...and loose stools as well. I've been diagnosed for a year and a half now but I'm sure I had it longer since liver enzymes have been up for a few years. What inexplicably helped relieve all my symptoms was intermittent fasting. I had been keeping up with the research on how it decreases inflammation and decided to try it when my alk phos went up again. To my surprise it not only lowered my enzymes, it took away all symptoms I was having as well. And all I do differently, is delay my breakfast or first meal each day until noon and limit all eating to between noon and 6 pm each day. I feel a lot better and that's all the motivation I need. There is a growing body of research on the benefits of reducing our eating "windows" and how it allows the body to switch metabolically from digestion to repair. That said, we are all different. I hope you find a solution that suits you!

I have suffered for over 11 years now with severe diarrhoea, bloating, blockages, cramping nausea etc and have had every test going. They took me off urso for a year and still didn't stop so I feel it is the pbc. They have put it down to ibs but I think that's their easy way out. I don't suffer with any other symptoms like the itch. I do get liver pains.

Hope this helps?

You are not alone. I was diagnosed just over a year ago and also put on Urso at the time of diagnosis. I had a horrible first 6 months on the urso with dizziness, diarrhea, stomach/liver pain, headaches, muscle soreness, back pain, vomiting.....I had to go on disability for 6 months due to these side effects but stuck it out and continued taking the pills as my GP was confident that once my body got used to it I would be ok - he was right. These last 4 months or so I have been great and almost “normal”. I did however find there were triggers that would define how I felt - stress and fatigue were huge in just overall feeling unwell. The stomach/liver pain, diarrhea and vomiting - ALL food related. I had to stay to a strict “real food” diet. I ate healthy before but since the urso medication - no processed foods, no fried, greasy, high fat, high sugar, saucy, anything. Only whole grain bread, or homemade bread and baking, fruits, veggies, chicken, fish, whole grain rice, lentil pasta. I even have to wash the grease off ground beef once it’s cooked. Was a total learning curve and trial and error thing but it forced me to eat really well - and I feel so much better now.

Try to eat whole, healthy foods and see how it goes. Keep in mind your body needs to get used to eating a high fiber diet so you may still feel kinda “crappy” and bloated and gassy but you will adjust in time.

Good luck and hang in there.

I also have problems with chronic diarrhea. It started with no warning and it's almost every day. I spend so much of my day in the bathroom. It's discouraging. Plus with this pandemic situation, making sure I have plenty of toilet paper on hand is just one more thing to worry about! Shortly after it started, I had a number of tests - saw allergists who told me I was not allergic to things but that not being allergic didn't mean I didn't have food sensitivities. But I never got further than that. Saw a gastroenterologist. Had more tests with him. I can't even remember what they were for - definitely for any bacterial infections. Came up with nothing. I just have a really limited diet now - almost no fruits, no eggs, avoid certain vegetables. I take immodium almost every day when I just want to get out of my house and DO something. I never associated it with Urso. Now I'll have to check and see when this started compared when I started Urso. It wasn't right at the same time or I definitely would have made that connection already. But it might have been the same year. I started with Urso in February one year and I started having the bathroom problems in the summer because all my testing was in the fall. But I don't know what year it was and I'm wondering how to figure that out.

If you get any answers, I'd love to know. It colors my whole life. I never make appointments for the morning because I never know what days I will spend the first hour or so trapped in the bathroom.

No but I do have many BM' s a day. Have you had your gallbladder removed some people end up with chronic diarrhea afterwards

Unfortunately, I get horrible gas and diarrhea often. I do get pain where my liver is. The Dr says it's the sac around it not the actual liver

Hi. I am back again. I spoke with the clinic nurse at Royal Free Hospital where i attend...

I have been on Urso for 13 years. so she does not think that has anything to do with the problem ! I have been on Ocaliva (obetacolic Acid) for 6 months and she suggest I stop that for one week. not ideal but process of elimination. However I pointed out that I had problem before going onto Ocaliva. Anyway have to go with the flow so doing as she asked.

My tummy feels inflamed and gets bloated, as well as (getting personal now) Loo visits are an experience !!! Oh dear never thought I would be discussing these things so freely - got to keep a sense of humour, but it is so lovely to hear that others are in similar situations. Thank you all even though I did not raise the question. Hope this has helped Jess. Take care all Keep safe.

Thank you all so very much. It brings a sense of relief to know that I am not crazy or alone on this journey. Thank you all for replying and sharing. Together we will overcome this

This is so interesting.... I do not take URSO and have had loose, explosive bowel movements forever. Tests revealed nothing. I eat really clean so started eliminating nuts and seeds to see if that was the issue...nope. My husband also gets loose stools from his medications. Well just last week, I was looking for a recipe for my hubby to snack on when he needs a sweet treat. I found a great Paleo cinnamon roll recipe and decided to try it. The very next day, formed stools for both of us. The recipe calls for 1/3 cup psyllium powder. So I was researching psyllium powder and sure enough, it is recommended for IBS type issues. No running to make it to the toilet for those "no notice" episodes. the recipe is really easy, clean, and delicious. A roll a day keeps the runs away!!!. Message me on chat if you want the recipe. Be well

Yes. I have been told that once you have one auto immune disease your chances of getting another are significantly high. I think it is the disease itself but I guess it could be IBS.

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