Does anyone else with PBC suffer from prolonged bouts of Diarrhea? I can have severe bouts of this for 3 or 4 months at a time and then it can disappear for a year ? Have had all the ‘invasive ‘ tests and nothing nasty diagnosed except a twisted bowel and diverticulitis ( which is normal in a western diet and being of a certain age). So it’s been a case of just get on with it. These episodes effect my daily life in that I dare not use public transport or go for a long walk and my outings are planned around where the toilets are and planning when to eat if I am going out do that I can ‘ say goodbye ‘ to the food again before I set off. The only good thing is the obvious weight loss! Just wondered if there good be a PBC connection as all other channels have been exhausted 😞

28 Replies

  • Hi Amanda,

    I have a friend with that same issue and she has Crohns as well as PBC. Have you been checked for Chrohns?

  • You should check in with a gastroenterologist. Also urso can sometimes impact that as well.

  • I talked to my doctor about this and she thinks it has to do with one of my pancreatic enzymes...either too much being released or not enough...I’m going to see her next week, I’ll ask. She said that she could give me something for it but I wanted to try a probiotic first. That has helped a lot, also cutting back my meat consumption.

  • I was experiencing diarrhoea with pain and gp said it was to do with my PCB and so I soldiered on. However it was getting worse and my daughter bought me a book called Grain Brain which is about the effects of gluten. I cut gluten from my diet and all the pain and diarrhoea stopped. When I reported this to doctor he did a blood test for Coeliac and sure enough I had the antibodies. I then had to eat gluten before a camera up and camera down test confirmed I have Coeliac disease. Coeliac disease is another autoimmune condition.

    If you haven't tried it already it is worth cutting gluten (wheat barley rye) from your diet to see what happens. It has revolutionised my life. Good luck. Diane

  • That's good. Eat more fish. Try to stay away from farmed salmon & tilapia...read that because of farming methods, they are high in contaminates. I eat wild Alaskan salmon, ahi tuna (have to limit that to 1-2x a week because of mercury levels), wild pacific cod, and perch also. I bake it with veggies in a parchment pouch at 450 degrees for 13-17 minutes depending on thickness of fish. I also eat organic chicken & ground turkey. I indulge in a burger or steak every now & then, maybe once a month.

  • nycgirl2012...I love wild Alaskan salmon. I was always able to buy it at Sams, but now they only have salmon farmed in China. I won’t touch it. Any idea where it can be found?

  • I find it at ALDI in frozen single serve portions...not very thick so these must be the smaller salmon...but I’ve seen it frozen in several stores like this...I only like the flavor of the wild Alaskan...

  • We do have an ALDI here. I’ll check it out. My favorite way to fix it: 2 TBS olive oil in iron skillet( depending on how many filets) heat oil, season salmon (I like creole seasoning), sear both sides & put skillet in 350 deg oven till done. Thanks for the info🦋

  • I just found this week Coconut Oil in ALDI...it is a cooking fat that bypasses the action of the bile salts so a lot easier on our livers! I used it last night and like it. See if your store has it...in the refrigerated section by the butter.

    This one is GMO free

  • Great! I’ll try it. 🤗

  • Is the coconut taste obvious?

  • No! That is one reason I have never tried it but none what so ever...

  • Appreciate it!

  • There are two coconut oils. The organic one has coconut flavour and the cooking one doesn't.

  • Costco's has flash frozen wild Alaskan salmon, individually vacuumed packed by fillet. Think the pack has about ~3 pounds. Costco also has smoked wild alaskan sockeye salmon. You are right...I don't trust foods from China. Even the Chinese people, those who can afford it, buy products imported from US or other western countries.

  • Unfortunately, we don’t have Costco. Closest is in Dallas. I do prefer individual vacuum packed. Thank you🌺

  • They also have wild salmon at Trader Joe's, not but individually packaged. Go with Aldi's then. Prices there are good.

  • Got it😎

  • THAT is exactly what I’m trying to do with my diet! Lol. I’m getting close but still have a ways to go...I have however cut WAY BACK on meats regardless of type and cut OUT red meat (except a bite or two from my boyfriends steak) and found it’s really helping with the side pain

  • That's wonderful. A healthy lifestyle has benefits all around! Keep up the good work! 🤗

  • I’m trying to do better also. My diet wasn’t bad but can always be improved. I won’t give up Chinese & Mexican though. I just don’t eat it as often. I love good food & do not need to lose even a lb. it’s hard to keep weight on & eat healthy.

  • You can make your own Chinese & Mexican foods so that they are more healthy. There are always recipes made healthier on the internet.

  • Oh I know but there’s a Mexican restaurant close to our house & it is so good. If I didn’t work, I would put more effort into those recipes. 🤗

  • Me too! I try to cook as often as I can but I love to eat out!

  • I had this problem for about 1.5 years. Doctor said it was IBS. I took high dose probiotics. L-glutamine, digestive enzyme, collagen, methylated B complex. It eventually stopped.

    Hope you get better soon.

  • Amanda

    I had a similar situation for many years. It was dibilitating and life altering at times.

    I reported the problem at every doctor's appointment for years and was often told to take Imodium. That didn't work and my symptoms were a bit unpredictable which would have meant taking Imodium every day as a preventive measure.

    Finally, the past January, my gastroenterologist suggested that I take a drug called xifaxan which is used for 14 days to treat small intestinal bacteria overgrowth (SIBO).

    Apparently they have found a large percentage of people who suffer from IBS-D get serious relief when treated for SIBO.

    The only downside is that the drug is very expensive and insurance generally doesn't cover much of its cost. There is no generic version. The company that makes it offers a patient assistance program that can help with the cost.

    It knocked out about 85% of the problem. It wa a miracle drug. I still have bouts of diarrhea but not nearly as often. It's worth a shot.


  • Thank you for your reply, I am not alone with no answers !! I assume you are in America, I am in UK but will go do some research . Thanks again, this problem is ruling my life ! Good wishes and take care 👍

  • Amanda, I have had this problem and am still dealing with it. It started about a year and a half ago. Certain foods that I have always eaten and loved (peaches, eggs - basic stuff) started giving me instantaneous, dramatic diarrhea. I sadly stopped eating those things and then gradually more and more foods set me off until I reached the point late this past summer that I couldn't predict at all what to avoid. It seemed like everything was potentially a problem. I'd leave my house to do three errands and have to come home after only one because I could feel the rumbling. I was spending what felt like half my day in the bathroom. So frustrated and so isolating. I didn't feel like I could go to lunch or have dinner with friends.

    I mentioned it to my gastroenterologist over a year ago when I was there for a review of my colonoscopy results. He suggested probiotics. I took them faithfully for months, then slacked off, but I can't say that I noticed any results. I took Immodium on days that I needed to be out. I'd take it before I had any issues as a preventative. This summer sometimes I was taking the maximum dosage each day just to live a normal life and be able to go to the beach with my grandchildren.

    This fall I went back to the gastro to ask for help with this. He did blood work, and all kinds of stool tests. Nothing came back as the source of my problems. I went to an allergist, talked a long time with the doctor and explained the depth of my problems and how long this had been going on. I tested negative for everything they checked. She did say that food sensitivities are different than allergic reactions but that doesn't really help me.

    Neither doctor checked me for yeast and I suspect that might be my issue because my sister had what sounds like a similar issue. Her doctor did test her for yeast. It was positive. She took Diflucan and is now more careful to watch how much sugar she eats and has things under control. I'm not sure why my doctors (despite my request) didn't check for yeast. They both said something similar which didn't stick in my head - something about it not being a clinical ... something. I have been reading on line about curing overgrowth of yeast naturally and I am now drinking raw apple cider vinegar - only a capful mixed with warm water, once or twice a day. I think it helps.

    One more thing, it seems to solve the problem without dealing with the source (which bothers me, but...) my gastro suggested that I could take Questran (generic is cholestyramine) I had taken it for about 4 months almost 20 years ago and I knew I could handle it and it might work, so I agreed. It's a powder - an old-timey drug to reduce cholesterol. It absorbs fat in the intestines. One of the side effects is that it causes constipation in many people. Conversely, it helps with diarrhea. I had learned that many people who have their gall bladders removed end up with diarrhea whenever they eat anything with a higher fat level and this works for them. I took it for less than a year after my gall bladder surgery and weaned myself off as my body seemed to adjust. I am now drinking it again and it is working. I have not had to take Immodium in almost a month. I am still avoiding my known triggers but I am able again to get out of my house for hours at a time. I have to say that taking it is a challenge. Number one, what I have is orange-flavored which I hate. I read that there is an unflavored version which I will ask for next time. It is grainy - tastes like sand in your mouth. So far, the best method for drinking it that I've found is in hot sweet tea. You need to keep stirring or otherwise you'll end up with sludge at the bottom of your cup that you have to swallow. The other tricky thing is that it will absorb pretty much anything in your intestines when it gets there, so you need to take any medications that you need more than two hours before you drink it (so that it can get into your bloodstream) or 4-6 hours afterwards. I'm finding that tricky because I take certain pills in the morning and others in the evening and if I'm not watching the clock, I run into timing issues.

    Sorry, every time I write, it looks like an essay! I just type like I talk - a lot!

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