Hi Mark, followd your link from the PSC forum……..I was diagnosed some years ago now and have had 4 (or is 5?!) annual colonoscopies (as well as sigmoidoscopies/endoscopies/MRCP/ERCP….the ‘proceegies’ go on!!!)
I love your blog and will never again be able to take the senna or Citramag without laughing myself to the nearest toliet!! Dr C is my consultant as well and is just fab……….
Great blog….. Good perspective.
I’ve had colitis and I’ve got PSC. I say had colitis because unfortunately I had to have an op 7 months ago to effectively take it out to remove a stage one cancer. The cancer was sucessfully removed and I think I’ve got a similar attitude to you as I’d rather to enjoying life than counting my days.
I can completely relate to the mixed verdict on the PSC … I had exactly the same experience!
Been a keen viewer of TE and have been following your exploits on Twitter for a while now, read through your blog and it seems you have gone right through it there, sounds bloody horrible.
I am also having treatment for a nasty illness at the moment as well, vitamin B12 deficiency, like you I got gradually worse it took them 2 years to diagnose me as B12 deficient by this time my levels were so low I could hardly walk and the constant palpitations and dizziness and fatigue were horrid.
I am now on regular B12 injections and am slowly improving, the reason that I mention this is because alongside your illness you may find that your B12 levels are low too and you would likely benefit from B12 injections.
In the UK the acceptable B12 level in your blood is 200-300 pico grams per ml although this varies however many people start to feel unwell even at this level, in other countries the norm is 500-1000 pico grams per ml.
My level was 80, I have to say it was as near to feeling like death as you could imagine, many people suffer permanent damage when it drops this low, I was lucky but many people are not so.
Now the may have done your bloods and checked for it but insist that they tell you what your levels are, the injections are cheap and painless and if you are low you really will feel the benefit of it, B12 deficiency is very common esp if you are a vegetarian as well.
You can also take sublingual tablets of vitamin B12, these are by far the best method short of the injections as it bypasses the stomach, you simply put a tablet under your tongue and let it dissolve, you absorb it straight in to your blood this way.
They make a massive difference to me, it may help you with some of the tiredness that you are experiencing.
Its worth try Mark as I know that you have been having a lot of pain/fatigue lately.
Just google B12 deficiency and you will find lots of information.
Amazon sell the tablets if you want to try them first,