PSC and Colitis in remission

Hi everyone . First of all let me introduce myself . My name is John from Cork city Ireland . I would like to tell my story with regards PSC and Ulcerative Colitis in the hope someone might take something from it and help them in there road to recovery or a better standard of living .

In mid August 2016 I started getting serious cramps in my stomach . These continued for months and weren’t going away . The best way to describe the pain was like someone putting a dagger into my stomach . I was also going to the toilet a couple of times a day and my stools were all watery . In my head I was thinking this will go away and it’s wasn’t anything serious . Looking back I should went to the doctor straight away but I didn’t . So this went on and wasn’t going away . It wasn’t until late October I decided to go to my doctor . I went and he told me I had IBS and to take cofelac and gave me Fibre Gels( later when I was diagnosed I realized taking these gels was like putting fuel to on a fire ). Over the next few months my condition was getting worse . UI also started to look worse and I started looking unhealthy . At the time I didn’t realize how serious this was.

I’m currently working with a big financial company and all staff are giving free medicals in a local private hospital . Basically HR ring you and tell you that you’ve an appointment if you want to do it. It goes on how long you been working in the company . Luckily I got a call in January saying I had an appointment . So I went to the hospital done a full medical . I gave blood and stool samples . The results of my bloods were my liver function was high , low iron levels and there was blood in my stool sample . I got my blood tests results on the day and I was told to abstain from alcohol for 6 weeks and go back to my own doctor to get my bloods redone and also speak to him about a colonoscopy .

The 6 weeks past and I went back for my bloods to be retested . I had a few drinks during this period but nothing serious . My symptoms were still the same . I got a call off my doctors saying my bloods were still high and to stay off alcohol for 6 weeks . This time I didn’t touch a drop of alcohol . I got retested and a week later I got a call to come in to see my doctor . I was told my bloods were now 3.5 times higher than the previous blood tests. I told him I had abstained from alcohol and to be honest this is no surprise as my stomach cramps and diarrhea were severe . He said he would refer me to see a specialist . I had private health insurance through work so I was seen a few weeks later . If I was a public patient I could been waiting a long time .This was late April 2017 now . I went to the specialist around June . I’m not quite sure now the time period but over a couple of weeks I had itching all over my body. I remember saying this to my mother and she said that it must be the pollen in the air as we were coming into the summer. At the time I didn’t realize this symptom but I now know it was . This did go away but it lasted for a good couple of weeks .

I went to the specialist in June and she told me I would have a colonoscopy and liver ultrasound in August . On the day she told me I had ulcerative colitis and she gave me Asacolon to take . I had a follow up appointment in October . When I went to see her she told me I had PSC . Straight away I was in shock . I automatically assumed it must be alcohol related . In Ireland once you mention liver disease you’d automatically think it’s from alcohol . I did enjoy a few drinks at weekends but it was like any normal person my age . I then started reading about the disease and realized its wasn’t and at first it was hard to explain this to people as I said in Ireland when you say to people liver disease they think it is alcohol related . In a away at the time I was happy I was diagnosed . I had been through a lot of pain and once I had my medication and knew what was wrong I could get better . I was given Ursoflak for my PSC.

The more I read about this disease I realized there seemed to be no cure. It was progressive and eventually my days would be numbered . Being honest my mind doesn’t accept things like that . I knew myself something must of caused it . Something must have clicked the switch in my body . Was it my lifestyle ?I was fit enough . I play an Irish sport called hurling and I go to the gym all the time . I did go out socializing the weekend . I did suffer from anxiety and my mental health after the weekend wouldn’t be great . But this happens a lot of people . Was I drinking to much? .Maybe I was but no more than I did from when I was 18. I was 28 years of age and I wasn’t going to allow this to defeat me. I had overcome other things in my life and I couldn’t in a million years accept this fate.

Straight away I stopped drinking and occasional drank . I started to look into what caused this . I was thinking in my head I didn’t drink alcohol when I was getting my blood tests done and the bloods came back 3.5 and half times higher so it couldn’t be alcohol that is triggering this disease . I knew I couldn’t drink it to make me better but my point is I thought this had to be something else . So I looked back to the time I was sick . I had returned from a 3 month trip in Prague in July 17 with work . I was training a lot . Looking up different ways to improve my recovery from the gym and hurling . I had read online that milk helps you stay hydrated . I went from drinking milk on a odd occasion to drinking liters of the stuff . Drinking it before bed and in work I was drinking loads and a good source of protein for muscle recovery . I would wake up in the morning having to rush to the toilet with the cramps . At the time this never came into my head . I kept drinking it but can’t remember when I stopped but I realized now that this must have played a part . I looked up online is there any relationship with milk and IBD. This is another point . My head tells me the Colitis must be causing the PSC . To me this is the root problem that is causing the PSC . I’m not a doctor or medical profession but common sense tells me this even without scientific evidence to support this . I went online and to my amassment there was an article in a British newspaper saying that there was an article that milk could be behind the rise in IBD.

Funnily enough the doctor in the article is a lecturer in the college I went to . This to me stared making sense now . In the article he mentions a bacteria called Bilophila Wadsworthia which is a harmful bacteria in the gut but also one that can survive in the gut and cause harm . I looked for information how to introduce this in the gut. This was only the start of November 18 and I had another appointment in mid December 18. I found this study online how to reduce this bacteria in the gut .

So with this I started taking a 50 billion probiotic which contained the 4 key bacteria outlined in the study . I brewing my own water Kefir (not milk Kefir) and eating table grapes . I did try the Inulin but straight away I knew this wasn’t right . I complete cut out alcohol and limited my dairy intake . I cut out as much fibre as possible . Potatoes are a huge part of the Irish diet and I cut them out as much as possible and mainly stuck with white breads pasta etc. I went back to my specialist in December and she took bloods. She said there was a huge difference in my bloods. My symptoms during this time did improve greatly and I continued with my medication and intake of probiotics . I also done a lot of physical activity . So last year I continued on this path . In my head I was fighting a war and I was taking this on with the only way I knew to take it on. I had also introduced another supplement called Bosswellia Serrata . This is also meant to kill bad bacteria in the gut. The gut has gram negative and gram positive bacteria . The gram negative bad bacteria are able to survive in the gut and are hard to kill as of there make up. After I started taking this the cramps went away completely . My stools weren’t as watery but they weren’t as solid as before I got the disease . My energy levels were high and I was in great shape . Being honest I looked and felt the best I’ve felt physically and mentally in years . I also forgot to mention that I took an Iron supplement during this time . I stopped taking this in March when my levels were back to normal . I felt different after taking it so I stopped. I also was taking a multivitamin drink each day called berocca boost with Guarana . I went back to my specialist and my bloods were continually improving . She even asked me to bring up all my medications and other supplements to her as my bloods were very good and she was amazed . I had actually bought up the milk thing months before but she wasn’t having none of it to be honest . She brushed it off straight away . She is a lovely women and I’ve no complaints with her. She is a medical professional and they have to play by the book. I understand they can’t discuss alternative ways with you as you might use this against them if things don’t work out .

So last August I went back for another colonoscopy and liver ultrasound . I stomach was unremarkable and liver was stable . I went up to her in December just gone and she said I was in what they call remission . She told me to continue to take my medication . Right now I’m symptomless . I stopped drinking the kefir and reduced my probiotic intake . When I done this I noticed my stools were perfect . I might sound weird but this brings a smile to my face . I’m due to get more tests in a few months so I’ll know more then .

So if I was to give my honest opinion on this disease I would say it is caused by bad bacteria in the gut. Funnily in August I read an article of the antibiotic Vancomycin bringing remission to those with PSC. This now from what I see has become a hot topic and to me confirms my way of thinking wasn’t a million miles away . I just hope someone might take something from this . If anyone has any questions feel free to ask . I wish you all the best in your recovery and I want you all to realize there is hope and to not believe you have been defeated and keep fighting these terrible diseases . The above medication is expensive so maybe these things might be an alternative way around this . I bought the probiotics in Ireland but the boswellia in America and shipped to Ireland .


Thank you for sharing your story. I am glad that you are doing much better and hope things will continue to improve. I would encourage you though to continue to get your LFT’s checked at least every 6 months and an MRCP once a year if possible. You need to be sure that what you are doing is truly turning the PSC around and not just the UC. I hope you are on to something that may prove beneficial to other PSC patients. I certainly plan to share your post with my hepatologist at Duke here in the States for his opinion on your findings. We certainly are hopeful that we will see a cure for PSC one day. The very best to you and again thank you for your contribution.

PSC 2011 / Liver Transplant 2015

Thanks Mark,

I just wanted to share where I am at and share these things in case other people may see something . As I said my hepatolgist wasn’t interested in my story but I fully understand this as they have to go by the book. I genuinly believe I wouldn’t be where I am without thinking the way I did . If you or anyone requires any information about my case I can request this information from my hepatolgist in Ireland or give ye permission to request this information.

Happy St Patrick’s day ,


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I heard back from my hepatologist this morning. In two different email exchanges here are two observations he made. I hope this is of help.


Hi Mr. Wilson, My main comment would be that he needs to see someone with experience in IBD. Those folks either take care of PSC or at least understand it all well. He is a bit overwhelmed by it all right now. First priority should be to get the UC under better control.

I then asked him if he thought the different meds/supplements you were using was actually causing the PSC to go into remission. Here are his comments.

No, I do not.

I do think stable UC helps PSC though and so part of my reason to get him treated there


Hi Mark,

As I said in my blog I have been seen my a hepatolgist . I’ve had two colonoscopies and two ultrasounds . I’m confused what he means get the ulcerative colitis under control . As I said I’m in remission . I came in here to share a alternitive things that helped me in recovery. The below doesn’t make any sense so I’m just going a leave it at that.



I’m not at all trying to discourage you. As long as you are doing well I’m thankful. My biggest concern is that you not become content about the PSC long term. Glad your doctors are keeping a good watch over you.

Thanks again for your post. It certainly was encouraging.