Hello to everyone in the group. I know this is not a pleasant topic to discuss but I need some suggestions. I have been having increased problems with diarrhea in recent weeks, usually after an evening meal but sometimes earlier in the afternoon. It really can wear one down quick. I have been feeling more generally unwell in recent weeks and wonder if my bilirubin is on the rise again. I was just a shivering this evening after spending so much time in the restroom. I have never had a cholangitis attack although I keep a bottle of antibiotics by my bed just in case of one. Does any of this indicate the onset of such an attack? I did have 2 ERCP's within two months of each other at the end of 2014, so I am wondering if I have bad strictures again that will need to be opened up. I am also currently on the transplant list at Duke.
Thanks guys for any suggestions you might have for me.
Chills are a big red flag for cholangitis. Loop in your transplant coordinator/hepatologist for any changes to symptoms like this. Give your transplant team a call to let them know what's going and to explain your symptoms. Ask if they recommend you start with the oral antibiotics you have on hand or if they want you to come in.
Personally, I always had a full purge (vomiting and diarrhea) at the onset of a cholangitis attack followed by an absence of any appetite and all of my PSC symptoms getting turned up to 11. That said, it is different for everyone.
Fever and/or chills means you really need to start thinking about a trip to the ER. I suggest checking in with your team at Duke sooner rather than later to see what they recommend.
First thing to do is get stool tested to rule out organisms, bacteria. I had diarrhea issue for a few weeks, thought it was PSC-related but it wasn't. Bacteria was identified, treated with antibiotics - and total turnaround. Wish I hadn't waited so long.
My cholangitis episodes don't involve diarrhea. Fever, chills, nausea... but as jtb says - different for everyone. I hit the Gravol (Dramamine) and sleep for a few hours. If still feel hideous the next day, fever, chills etc, means likely obstructed and off to the ER.
This is not something that happens all the time, this week it seemed more than usual but when it does it sure is a bother. I really think it has something to do with the flow of bile. When the bile flows like it should my digestion is fine, when it doesn't then stuff runs right through me for the most part. It has been better for the last couple of days now. We shall see. Thanks!
Gloria said:
Do you have ulcerative colitis? Have you been tested?
Bile is needed to digest long-chain fats (most fats). These fats will pass right through if bile isn't flowing. You could try a lower fat diet to see if it improves things.
I also had no colitis issues but needed to get antibodies checked and a colonoscopy done as a condition for getting listed for transplant. My hep explained that some people can have colitis and be asymptomatic for a long time. It wouldn't hurt to figure it out conclusively one way or the other. If it turns out you do have a colitis issue, it is super important to get it checked frequently because of the cancer risk..
Ever since I started juicing raw vegetables/fruits - I've had no problems with digestion - though that might not be for everyone. A raw carrot-apple juice ensures my chills are gone. They say four 8oz glasses of raw juice is the most a person with liver damage should have daily so consulting a doc on that matter is always good. My doc says the worst that can happen from juicing is weight gain.
Thanks for the information Stephen. I'll keep it in mind. Thankfully the diarrhea is not constant and is usually controlled with Imodium tablets. I had never heard of it before so thank you for the information. I have made it a strict practice since my diagnosis with PSC to not take anything without running it by my hepatologist first. My eldest daughter and son-in-law although wanting to help me with my PSC suggested a liver cleansing diet one time, and my doctor strongly warned me against trying any of those homemade remedies. They can do more damage than good.
In my most recent visit with my hepatologist last week he said I should have another colonoscopy and be checked for ulcerative colitis. Did I understand him correct that they take biopsies inside the colon to determine this? What are the telltale signs most people experience with UC? Does the problem lesson after transplant? Thanks!
Gloria said:
Do you have ulcerative colitis? Have you been tested?
Uc is separate, it is in colon. It can be seen in colonoscopy camera images. Biopsies may help further to confirm, but biopsy is mainly for detecting colon cancer sigs.
Liver transplant does not affect uc any way.
For diarrhea and/or ulc colitis, I recommend high quality probiotics (in addition to any drugs recommended by your doc). I use vsl#3 which seems to be the most researched and highest quality probiotics.
Naturally also food affects it. Everybody is different…certain foods are bad. Need to identify them and avoid them.
In general, eg blueberries have been found to reduce inflammation, especially when taking together with probiotics.
The biopsies can diagnose UC. The inner lining of the large intestine will be red, inflammed and will look very wrong under a microscope. Colonoscopies don't just look for signs of cancer.
Signs that you might have UC could be blood in your stool, serious diarrhea, weight loss, stomach bloating and swelling, and pain. If you have UC you will need to be on medication, probiotics will not bring down the inflammation and just won't cut it. (trust me on this, I know). Although probiotics are a good addition.
I hope you don't have UC it is no fun. Good luck with the scope.
fcmmark said:
In my most recent visit with my hepatologist last week he said I should have another colonoscopy and be checked for ulcerative colitis. Did I understand him correct that they take biopsies inside the colon to determine this? What are the telltale signs most people experience with UC? Does the problem lesson after transplant? Thanks!
Gloria said:
Do you have ulcerative colitis? Have you been tested?