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Hi all,

A little background about me, I'm a 41 year old bloke, fairly active working in a very stressful and physically demanding environment, was diagnosed with ulcerative colitis and PSC back in 2003. No real dramas since diagnosis except a few colitis flare ups. Just recently however I became jaundiced. LFTs done which raised some concerns, since then I've been prodded and poked a fair bit, CT scans, ERCPs, lots of bloods, liver biopsy.

My gastro has been struggling to pin down what's going on. Cancer was mentioned, PSC worsening, Autoimmune Hepatitis. It still hasn't been labelled, AIH was the latest best bet and I was put on steroids to try and start treatment for this however after my latest visit to my gastro he isn't happy with the results and is weening me back off these.

He is now referring me to Kings and the main focus seems to be on a transplant. However I think the guys and girls at Kings will be making that decision.

Has been a LOT of waiting and thinking of the worst. As I said there still isn't a definitive diagnosis. Am hoping that once I get to Kings I'll start to get more answers. But for me this is the worst bit. The not knowing.

Am feeling pretty anxious about the possibility of needing a transplant. Lots of different emotions racing around. Trying to stay positive and strong for my other half, she is struggling coping too, feels like she is useless and not helping, in truth she is amazing and I'd be lost without her.

So anyway. The coming months, years are going to be interesting.

4 Replies

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  • I'm sorry to her about your situation and I hope that you can get a clearer picture after your visit to King's. Inevitably, it is a stressful time for you and your partner and I hope you can get and give support. As you will see from a number of posts on this site, partners are often seen as a a vital part of the experience of dealing with liver disease. I will be forever grateful for the support I got from mine over the time from diagnosis to transplant and beyond: among other things, a constant reminder that life can get as close to normal as physical health allows.

  • My son has had ulcerative colitis since he was about 13, which was treated with asecol and 6MP for over 10 years. Three years ago he was diagnosed with PSC. He is now 27. After being diagnosed with PSC he changed his diet to be gluten and dairy free, and took several vitamins and supplements to detoxify his liver (milk thistle, selenium and others), and reduce inflammation and improve his immune system (alpha lipoic acid, n-acetyl cysteine, glutathione, B vitamins, Zyflamend and others). His liver function values improved modestly. However, about a year and a half ago he also tarted taking Low Dose Naltrexone (LDN) and his liver function values all returned to normal, and his inflammation markers also became normal.

    I suggest you read materials about LDN on the web: LDN Research Trust; Dudley Delaney's blog; Google Dr. Burton Berkson and read his books on LDN, Alpha Lipoic Acid and B vitamins. LDN coupled with a regimen of vitamins and supplements, and a diet that limits items such as gluten and dairy that cause inflammation and cause leaky gut, may help you to slow or eliminate the progression of auto immune conditions such as PSC and ulcerative colitis.

  • Sometimes you never get an answer. I had a transplant 2 years ago at 42 in Kings. The cause was never identified. But if it comes to transplant at kings you'll be in safe hands.

    Good luck.

  • hello. Welcome to the site. So sorry you have so much going on and not getting answers. I wrote on my post about docs making us wait for news. I had a liver transplant in April this year so if it comes to that. Your in safe hands. I was at Leeds but all equally as good. It's terrible on loved ones as you say its a feeling of helplessness' but support is what your getting from her that's all she can do really. I pray 🙏🏻 you get answers very soon. In my thoughts . Sheri

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