There are many other examples. For example, some respond to Urso and others don’t. Some progress so fast and some actually live a essentially normal life. You may argue that it could be due to different stages of the disease. But that’s one of those first considerations when designing a clinical trial.
To my knowledge I don’t think you have any control over increasing or decreasing bile production. As DHZ stated, the key is to keep the bile flowing and you do this by taking URSO to thin the bile and then when needed ERCP’s to open up the ducts so the bile will flow. It’s the lack of bile flow due to the disease that eventually kills the good liver cells and then you have cirrhosis of the liver in all it’s stages. I hope this helps.
Hi Bob. I truly appreciate your post and sharing your experience. I have been trying homemade probiotics but they seem to all cause dirrahea. I also tried a few types of probiotics gluten free dairy free and they also had the same effect. Would you kindly please let me know which type of probiotics you are using? Please.
Thank you very much,
We started with low density probiotics in the market and gradually ended up with VSL#3 which is very high potency.
A dirrahia like symptoms is normal in the first week of taking them, the key is not the probiotics per se, the food that you eat with it plays a much bigger role. You need to get plenty of soluble fiber with your food and compliment it with whatever probiotics you use.
My son had the same reaction and it took couple of weeks to have a nicely formed poop!
Good luck and don’t hesitate to ask if you have further questions.
I was wondering if by eating more healthy fats, I could increase bile. Or if I limited to say a little natural peanut butter in the morning if that would also limit the need to break down fat, and limit bile production.
Thanks @fcmmark & @DHZ for the reply.
I’m definitely trying the probiotics. They are on Amazon, 60 for $63.
Thanks Bob. I will increase my finer intake.
In your experience do you think it’s better taking probiotics in the morning or later in the day? Could my problem be also due to taking it with milk in the morning (coconut milk)?
I made a vegan butternut squash soup and give the probiotics 15 min. after that (once stomach is cooled down).
My best remedy for loosely stool is my vegan soups
We have been doing the same thing as you. Our 24 year old son was diagnosed last year in Oct. we were told there was nothing to be done- just live your life.
After much research on our own, we decided to change his diet to vegan, non gluten, oil, sugar or salt. Long story short, his abdominal pain is completely gone. His LFTs were coming by down, but have gone back up recently. We think the biggest factor is his stress level ( high) and lack of exercise. We haven’t started probiotics- but will definitely do so. He just started vitamin D recently.
We are doing another MRCP soon- so we are hoping to see positive results.
I think we are on the right track- but would love to talk to others who have been doing this longer. Also/ still haven’t found a hematologist in our area we connect to. We’ve been to 3 so far. ( NY area)
I would like to talk to you more on this subject privately - would you mind?
Good to hear that you have taken the same approach.
We haven’t put our son on vegan diet, he is having about 120 g of organic turkey or lamb a day.
Our experience is that good food is much better than probiotics but a year on high potency probiotics is necessary I believe.
Stress is a killer, try to reduce it as much as possible.
Of course, we can get and stay in touch.
I hope by this approach we get to the results that we are all hoping for.
@Hinda I’m in upstate NY and went to Strong Memorial in Rochester. I am eating the same way, no oil, vegan, whole foods, vitamin D3, have been for a little over a year. I still get elevated panels, and IBS symptoms. Asked my doc yesterday about VSL#3, he said it would be fine. I’m learning to control stress, that’s the hardest one for me. I walk 3-4 miles everyday, too. I would also like to connect with others who eat and live this way.
My son had fairly high LFTs not long after his diagnosis of both PSC and Ulcerative Colitis. He responded well to Mesavant but in addition to this we did probiotics and basically just low GI food but no restrictions as people have done here. All of his LFTs returned to normal except for GGT but the downward shift was dramatic and even his specialist got excited. We, including our specialist, almost thought he’d been misdiagnosed. So my point here is that we got the same massive drop in LFTs without restricting his diet. In reality it coincided with his good calprotectin levels for monitoring his colitis. When his calprotectin went back up so did his LFTs. We are now trying the VSL probiotic hoping that the higher strength probiotic will reduce inflammation in his gut and produce a further reduction in LFTs.
I am a sceptic with regard to drastically restricting food intake but I am totally in favour of good healthy foods which provide a constant substrate for good bacteria to thrive and until fecal transplants are considered a core therapy then probiotics are absolutely part of our every day therapy.
On a side note, there was an interesting article in an immunology journal recently about the use of bicarbonate of soda in water which has been found to down-regulate inflammation via the spleen. The science is embryonic but for some reason, for about 4 hours after ingestion, the immune system was found to switch to anti-inflammatory from pro-inflammatory. Naturopaths have been telling people to drink bicarb for auto immune conditions for some time now, and frankly I am a big big sceptic when it come to Naturopaths and various alternative practitioners, but this one seems to have something in it.
Melaine, Any chance you could post a link to that article about the use of bicarbonate of soda in water?
Re: Vancomycin. I’ve been taking it now since January first liquid CutisPharma and now Ani pills. Within a couple days on the liquid Vanco my decades long diarrhea stopped. Then three months later, with no improvement in liver enzymes I switched to Ani and within days my stools almost completely normalized. It’s been about thirty years so it’s close to a miracle. Now, I’m praying and waiting to see some improvement in my liver enzymes. (I also take VSL probiotic, and have been for a few years, the prescription VSL, much stronger although insurance doesn’t cover the high cost.)
I’m so sorry that you’ve been through so much and that getting the medical care you need is so difficult due to insurance issues etc. I hope that you continue to improve on the Ani.
Here’ s the link to the abstract of the article as well as the news article about the research. I would caution though that drinking bicarb can have negative effects such as electrolyte imbalances that can be harmful so although it’s interesting, I don’t know if it’s a good thing to do. I don’t really know, people do drink it on the advice of Naturopaths… Anyway, best wishes to you.
And the news story
Thanks so much, Melanie.
Best of care and best wishes to you as well.
My husband removed red meat from his diet to help with joint pains. Within two weeks the pain was gone. He then removed heavily processed foods, then dairy… with each change he saw immediate effects to his body. He then nixed it all and went vegan. (Which is easier and tastier than it sounds!) He loves the way his body feels now and won’t go back to his old diet. Last month the director of the liver failure program at our hospital saw us. My husband’s labs changed for the better around the time he switched his diet. The doctor told us, ‘I wish I knew why you’re doing so good so that I could share the info with the team. I hate that I don’t have an answer but I’m not going to look a race horse in the mouth. Don’t stop whatever you are doing!’
Thank you for sharing this. I am very happy for you and your husband.
There are overwhelming “anecdotal” evidences that many health issues can be improved by only changing one’s diet and lifestyle. Not a good news for big pharmaceuticals and processed food industry but the best for honest farmers and ordinary people. Perhaps that is the reason there has been not enough money for solid research on these subject.
Is your husband taking any probiotics or supplements?
Bob, I totally agree with you!
He doesn’t use a probiotic supplement but tries to get in sourdough, pickles, kimchi, and other probiotic foods daily.
He was prescribed magnesium and calcium. We decided to pass on the RX being filled at the pharmacy. We found the below and our doctor approved (it has the digestive supportive probiotics and enzymes you asked about).
Garden of Life Raw Calcium Magnesium
I did not know this brand and product, thank you very much for sharing.
I wish you and your husband best of luck and I’m very positive that you will see even better results by holding on a healthy diet. Please keep us posted.
hi to all, there’s some other topics related to SCD but this one seems most recent. so, i have ulcerative colitis(on remission mostly) and recurrent psc(transplanted 16 years ago). recurrence diagnosed 4 years ago. and i’m searching for solutions like all of you since than. my LFTs increasing…so about 25 days ago i give it a try and started scd diet(before i was eating whatever i want mostly wheat, pasta,pizza,soft drinks etc.) I try to eat bananas as breakfast, salat as lunch and meat or chicken as dinner. 2 very sharp differences occured. i started to go toilet only once for day at same hours and no diarrhea no gas no mucus no blood…no gas at anytime of the day. i liked it. BUT other difference made me cut my diet yesterday. i was feeling so weak like being awake started to become an issue. i feel like i lost all my muscles and hardly carry a big watermellon. that was the first time in my life that i felt so weak, also there’s an inflammation attacking to anything i eat with a low degree fever. so yesterday i decided to cut out the diet to see what happens. i bring back my old eating habits and after several hours here i am with so much gas and midday toilet with diarrhea and mucus very bad…but i feel so good like somebody gave me a life again. i find this so interesting. is this because of the bad bacteria captured me so i can’t live without them anymore? or do they still die off? is could be that long? i don’t understand it. i wonder if anyone had similar experience here? in this time i couldn’t check my LFTs my routine bloodwork will be 1 month later. but i want to go back to SCD diet. it seems like helping ulcerative colitis a lot and maybe help PSC too but i can’t find a solution to feeling this tired and weak…any recommendation? i also got the probiotic vsl3 but didn’t start to use it since it’s also illegal for SCD.
Hi Bob. Hope all is well. Can I ask you what probiotics dosage do you give you son daily? We are currently trying VSL#3, 450b, three per day.