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 .