LDN - Ulcerative Colitis & Crohn's

I was diagnosed with UC here in the UK back in 1998. To be honest I have trialled and been through all of the avaliable drugs that in m opinion do not seem to work. I live in Edinburgh and my local hospital luckily has some of the best resources in Europe for gastro diseases and most notably Crohn's and Ulcerative Colitis. I moved here in 2003.

I must admit compared to my first flare ups years ago where commuting the 8 miles to work day in the car was a complete ordeal toilet roll and baby wipes at the ready with spare underwear and trousers too, I am in better shape not physically, as UC is very draining and tiredness kicks in quite a lot. I do manage to have a successful career with good and bad days. We all know about the mental map of public toilets whereever we are travelling. My huge problem is taking my 2 young daughters to the park with no toilet facilities always puts the fear of God into me.

I have been on all the ASA 5 drugs, prednisolone (which in my opinion is just evil!) which have all failed. The last immuno suppresants is I was on - Prednisolone and Azathioprine carry so many side effects it is frightening. I have been off these for 6 months and do not feel any worse. I re3cently began taking LDN (low Dosage Naltraxone) which works in the complete opposite way to all other drugsa associated with Crohn's and Colitis. My consultant has been very supportive but cannot prescribe it for. The NHS (National Health Service) in the UK tend to go wuith what they know rather than try alternatives but my consultant is very open minded. He admitted that the current drugs used offer no cure and simply put the sufferer into remission for a while until the next flare up, so it makes the condition no better. The general view is that Crohn's and UC develops due to an overactive immune system (which can create more harmful bacteria) and the introduction of immuno-suppresants dampens the over-active immune system. However the number of colds flu and bugs I have picked up over the years leads me to believe that my immune system is actually very weak.

LDN works on the complete opposite, it is taken between 9pm and 3am each night. In every human we produce endorphins between 2am and 4am which boost and help maintain our immune system and fight infection and disease. LDN tricks the brain by sending a message that not enough endorphins have been produced and therefore a double dose of endorphins will be produced, boosting the weakened immune system shown in UC sufferers. Therefore the extra "friendly" bacteria produced fights infection and inflammation over a period of time. LDN has to be introduced gradually from 1.5mg up to a maximum 4.5mg although most males for some reason can tolerate less 3-3.5mg. This has to be taken religiously every night. I have been on this for 2 weeks and I'm on 2mg, I still get the odd cramp and a number of visits to the toilet - diarrhoea based stools but i have been told to perservere and up each week by 0.5mg to the maximum which can then take 4-5 weeks to get into your system and work properly. There are no reported side effects either unlike steroids and maintanence drugs currently used in UC and Crohn's. My theory is - what other choices do I have? I am willing to test this and if it does work then great.

I have actually been able to drive to Aberdeen from Edinburgh recently (3 hour drive) without stopping for the toilet - unheard of! Although admittedly I've experienced a couple of toilet stops since as the drug begins to work. If this can give me even 20% more mobility than I currently experience then this can only be a good thing.

I would highly interested to hear of any fellow sufferers taking LDN or contemplating taking it.

Lee.

Yes, they do say that LDN symptoms can make you feel worse before you are better if that makes sense  -you need to keep with it I am prepared to do this, as in my case it's either LDN or dratsic surgery. I will never ever touch steroids again or Azathioprine.

LDN can be prescribed but trying to convince your GP could be interesting. It is used for MS sufferers and also for Herion addicts! In herion addicts it has been used in a much much higher dosage, ie 300mg - 100 times stronger than for immuno suppresant diseases. It's in early stages but I'm open minded, nothing ventured, nothing gained.

Lee.

I have been getting quite severe cramps in my stomach followed by extremely urgent bowel movements, it seems to be as soon as I eat something then 2 minutes later it has gone straight through me. Diet wise, I eat what I want, I have received so much misleading information on diet that it is thorughly confusing. With Crohn's and UC I'm of the opinion that it is very much a personal disease and not one course of action fits all. I do not take too much dairy certainly not milk or butter - as I've never liked either. As I haven't taken these since I was a child I find it hard to believe these would cause symptoms as I have them already!

All of the supposed "bad things" such as sweetcorn, cereals etc I do not take, so why the problems with taking them? Some have said go gluten or wheat free? To do that means basically cutting my diet completely. Does anone have any advice out there?

With LDN, the jury is out, I also have some aching muscles, more at the lower back spine, that aside I feel ok, I am able to hold down a very successful career, not taken a day off sick for 3 years. If I am in pain I just cope with it, I have noticed my pain threshold has increased considerably with UC. I will give LDN 1 more month and then it will be back to Azathioprine I guess, I will never touch Prednisolone again - side effects are too severe and too many.

Lee.

Hi All,

My wife was diagnosed in 2000 with UC and has been through a lot of the usual harsh treatment with Prednisone being the cornersone of all of them, none of them helping very much. Since January she has stepped down between 2.5 - 5 mg of Pred per day. This caused a major flare resulting in 10-20 trips to the toilet per day. Almost 4 weeks ago she started taking LND (2.25 mg the first week and 4.5 mg after that) along with strict adherence to the SCD diet. Mind you her GI Doc was not pleased with her decision to try LDN and wanted to admit her to the hopital for steriod infusions that same week after undergoing a colonoscopy. She did not follow his advice and he's since dismissed her from his care. She was really as bad as she's ever been. With in the first week of LDN and the diet her bathroom trips were reduced to 6-8 time per day still with severe pain and bloody/watery D. The pain has since eased and her stool has begun bulk up with bathroom trips around 5 per day. Her energy is returning and she has gained about 5 lbs from a low of 94 lbs 4 weeks ago. She is still on 5 mg of Pred and will be tapering off gradually 1 mg at a time when her symptoms level off. I guess I wanted to share her story with LDN with you to  shine a positive light on it's potential. She is under the care of Thomas Cowan, MD in San Fransico and is following his advice to the letter.

Kindest regards, Bill

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.

Lee.