A belated happy new year to you all.
I did promise to keep in touch and let everyone know how I was faring on LDN and the consequences of Ulcerative Colitis. Unfortunately I was given a trial bottle of LDN by my friend which I later found to be out of date, this has to misfortune of literally knocking me for six and the ensuing stomach cramps and paid was extremely intense. Not surprisingly this put me off LDN completely for a long while. I stopped taking this in late summer 2009 and I've not posted since, a lot has happened in my business life with a huge amount of stress which has no doubt compounded to the symptoms of UC.
To give an update and an overview - I was diagnosed with mild UC in 1998 (12 years ago now), I went through the various medications (Asacol, all the other ASA 5 drugs, prednisolone, azathioprine etc) trying to find one which suited me personally and without too many side effects, not an easy task and more trial and error if I'm honest. I feel like I have travelled full circle at 3 times over now. Although my consultants and GP are fantastic by way of support and advice, they can only offer "approved market medications/drugs" which in my opinion do not offer a long term cure. Yes, I agree that the disease is individual and affects us all in different ways but the use of steroids only masks the problems and temporarily puts a stop on its progression.
Since the summer of 2009, I went 6 months without taking any drugs at all (I was completely fed up with the non-stop cycle of the past 12 years and nothing ever seeming to work!), I was on long term Azathioprine (200mg per day) which is my supposed "maintenance drug" to keep my body on the straight and narrow, the problem is this can affect bone marrow growth and intefere with blood cells too over time. As I have now passed the 10 year barrier for UC diagnosis and approaching 40 years of age, I now deemed "high risk" of developing bowel cancer and also of not responding to drugs. My consultant and GP have been trying to steer a course down the route of surgery which would involve the removal of my entire colon. The only problem with this is there is no guarantee that it will be successful and the surgeon will only know what he is dealing with once you are under the knife. It may involve a one, two or three stage operation which may lead to between 6-24 months from not working. I also have two young daughters aged 3 and 5 which complicates this equation together with the fact I run my own business and as such cannot afford to take that sort of time out. It leaves me contemplating either a life in pain or one of financial restraint and 110% reliance and faith in a surgeon and team I only see once a year if I'm lucky.
Apologies, I was digressing! Back to the UC and LDN - In late October/November 2009 I began to feel unwell again and in December was acutely unwell, loads of toliet visits, not being to travel anywhere more than a few miles from home. I drive into the city centre (about a 20-30 min drive) and was back to running the daily guantlet nad panic attacks of not being near a toilet and the chronic pain and maddening frustration at not being to complete such an easy task as driving to work without problems (think we have all been there!). This past month, despite my previous posts I succumed to temptation and am back on steroids again (Prednisolone) with Azathioprine and to be honest I have felt awful once again - these are seriously not working - I have another 2-3 weeks left on these and then back to who knows what.
Diet for me has gone out of the window - there is too much conflicting advice but generally in a flare up I tend to go for real "basic foods" - I am convinced somewhere along the line there is a connection between stress, anxiety, diet - after all UC and Crohn's is very prevalent in the Western diet. I have tried so many fad diets and cutting out all and sundry that eventually I have lost sense of what is good and bad for me now, apart from the obvious!
I think I am willing to give my old sparring partner LDN another shot, will knuckle down and give it 6-12 months as a last resort and if failing that perhaps I will have to visit my favourite surgeon and his rather unplesant chopping board!
I will keep you posted on LDN and if any of guys ever want to chat or correspond, I am more than happy to share experiences.