My story began prior to August 2015 when I was constantly feeling tired and had no real explanation for it. I would be practically falling asleep at work in the afternoons, however my first more noticeable symptoms were around August 2015. I woke up one night with a sharp pain under my sternum. I first thought it was food poisoning but when I thought about what I had eaten that day, it was nothing out of the ordinary and all home cooked with a glass of wine in the evening. By 4am the pain also started in my lower back left and right sides – what I now know think was a colitis flare. Prior to this episode, I considered myself a healthy individual. The following morning I felt fine however over the days and weeks, I started losing weight rapidly, was nauseous, didn’t want to eat, had night sweats, and dark urine and blood in faeces. I was shocked that all these symptoms hitting me at the same time. I saw my GP and referred to a GI and Hepatologist at my local hospital, the Royal Free Hospital in London. LFT’s showed increases in ALP, ALT, Low iron, and high esinophils. A colonoscopy diagnosed Chrons, however this has now been ‘downgraded’ to mild indeterminate colitis. I had a number of tests to rule out parasites and other possible issues, had an MRI which didn’t show any issues with the biliary tree and was put on prednisolone to see if this reduced any inflammation in my liver and bring my LFT’s down. However, the pred did nothing for the LFT’s, although it helped tremendously in getting the colitis under control. Finally I had a liver biopsy the result of which was evidence of periductal ‘onion skinning’ in the small ducts that was ‘in line with’ small duct PSC. This diagnosis came in January 2016 and was described to me as a diagnosis of exclusion, which meant having ruled everything out, they could only say it is small duct psc. The hepatologist team was absolutely amazing and one doctor in particular contacted me on an almost daily basis to update me on lft tests, imaging tests, urine/stool tests, and saw me regularly for ultra sound scans and fibroscans. Since then I have changed my lifestyle a lot. I gave up alcohol and changed my diet on the advice of an Ayurvedic doctor I have been seeing for the last year now, cutting out red meat, wheat, yeast, processed foods, anything spicy, and cutting down on sugar, salt. One symptom that persisted for me up until about 3 months ago was the fatigue. It was terrible – more often than not I would be very tired and if I slept it would be un-refreshing sleep. I would feel just as bad when I woke up. I decided I had to try something, so I tried cutting out all caffeine. This had a HUGE effect on my fatigue. Within two days I felt more awake than I had done for a long time. Since then I have had the odd caffeinated drink without the fatigue returning but whenever I think I have ‘cracked this’ and start drinking caffeine again the fatigue returns. I have told my hepatologist and GI doctor of this result both of who are surprised, but it works for me. I read a lot about people having itchiness with PSC. This isn’t something I have had as my bilrubin has always been within the limit. I have started having mild aches in my centre, and upper right chest and sometimes in my upper left chest which are a slight worry so I will discuss these with my hepatologist along with my latest MRCP imaging of the biliary tree which I had last week. Both my hepatologist and GI doctor see my case a bit puzzling and have looked into the possibility of me having vasculitis, but this came back negative, so the diagnosis stands as small duct psc on the basis of the biopsy and colitis based on the colonoscopies. LFT’s are constantly up and down and did briefly all normalize in December last year, but have all elevated again since. Great to see this forum to discuss our stories.
Rick, thanks for sharing your story and how you adapted to your symptoms.
Whenever I get that pain between my sternum and belly button, and it radiates to my back, that is an indicator to get to the ER. I learned that the hard way when pancreatitis reared its ugly head three times. Those symptoms, however, also indicate a gallstone… But better safe than sorry.
There are a lot of members here who also have UC. It has to be tough dealing with both diseases.
I’m glad you are making so many changes/adjustments to your diet. Whatever works for you, keep doing it. One thing about diet and UC when it comes to veggies-if you can cut it with a fork, it is usually ok. So steamed is good, raw veggies are usually a nope.
One good thing about your blood work is that your bilirubin is in the normal range. Bilirubin is a very good indicator of liver trouble. I hope your level stays that way.
The prednisone was meant for your UC, I think. I was on it when I had UC, and the four years I had psc, I was never prescribed it. Urso is a medication that arguably helps keep lft’s in the normal range.
Like you, I thought of myself as very healthy. Twelve years ago, I was in great shape, running, exercising. Then poof-Colitis.
While not is such as good of shape as before, four years ago I had that abdominal pain that radiated to the back. Poof-PSC.
Glad you found relief for your fatigue. That is the bane of many of our existence. We all have to cope as best as possible.
With the pain you have had in your chest, my liver doctor never got excited about them. He took action when the blood work indicated a problem. So don’t be surprised if your doc does not do much. Abdominal pain goes hand in hand with psc.
I have received the results of my latest mrcp. Liver has smooth contour, no biliary restrictions and no evidence of any new issues in my liver. As the only diagnostic evidence is still mild fibrosis found from the biopsy it looks like my diagnosis of small duct psc still stands - at least for the time being.
Looks like some good results of your MRCP.
One thing to keep in mind, though.
I saw on the results of one of my MRCP’s that the liver was smooth and unchanged in size. Wnen I saw that, I was so thankful.
Yet a few months later, my doc said that for psc, the size and contour of the liver was not important to him ( at that time), as it was the deterioration/beading of the bile ducts-inside and outside the liver, that had his attention.