Editorial Note: RxISK can sometimes seem to be all about the horrors of treatment. It’s not. It’s about people making the best use of drugs to make their lives better. Central to this is finding a doctor who will believe you when you tell him that something good or bad is happening. The horror arises when people are not listened to – when the “evidence” is given greater weight than the observations of a mother or wife.
As Anne Marie Kelly in Driven to Drink has shown, a motivated person with no background in healthcare or biology can help all of us understand things that it might take decades for experts to find. I was recently in Pakistan and this striking account by Osama Mustafa of a response of Ulcerative Colitis to Low Dose Naltrexone followed me home. It fits into a trail blazed by Anne Marie – except in this case there is a large literature out there attesting to the benefits of LDN.
I started suffering from Ulcerative Colitis after I had surgery for hemorrhoids about two years ago. My own assessment is that the stress from the surgery triggered my body to develop Colitis. Ulcerative Colitis is an autoimmune disease where one develops bleeding ulcers in the colon along with fever, weakness, anemia due to the blood loss and weight loss.
I couldn’t function normally since I had to rush to the washroom over 15 times daily. Life was depressing. I was stuck at home most of the time and was not able to run my business that I had just started. I ended up in the hospital where they referred me to a gastroenterologist who confirmed the diagnosis of Ulcerative Colitis.
A well known gastroenterologist put me on a conventional therapy of Melasalzaine. Initially my bowel movements became more manageable and I started to feel better for about three months. But then I started to suffer from nausea, and headaches. As my body developed a resistance to the drug, the doctor increased my dosage of Melasalzaine. It helped me and my symptoms improved but it could not control the bleeding.
Because of this I was put on prednisone, a steroid. It helped reduce the bleeding. But this comes at a price – steroids have severe side effects including destroying your bones from within. I put on about 10 kg in weight. I suffered from nausea, headaches and developed rashes all over my body. Gradually the medication became ineffective.
So my doctor decided to put me on Azathioprine. This is given to transplant patients to prevent organ rejection. I took this for appropriately 1.5 months but my rash went out of control and the nausea on medication was so strong that I could not taste food anymore. Everything tasted metallic. This apparently indicates that my liver and kidney were being affected so I decided to discontinue the Azathioprine.
By now 1.5 years had elapsed. I had become became increasingly weaker and could hardly walk. My blood loss continued. My hemoglobin went down to 7.6. It was 15 before the hemorrhoid surgery. I had to go and get a transfusion of 2 pints of blood. I felt better immediately after the transfusion but got an infection somehow through the transfusion so had to take an extremely strong antibiotic for 10 days.
After recovery from the infection, as my symptoms of Ulcerative Colitis were still not under control and the bleeding started again, my doctor increasingly frustrated recommended that I should have my colon removed. The idea was that if they were to remove my colon they would remove the area with ulcerations.
I thought about it. At the age of 41 to have the colon removed means that surely other complications can arise. I researched and found that there are complications from the surgery. It is not a 100 percent cure. I told the doctor that I didn’t want to go through another surgery knowing that my first surgery was responsible for the colitis. He practically gave up – he told me to continue with the medication I was taking and to manage myself.
Being an enthusiast for herbalism I started my own research. I read various blogs and websites. I came upon a website which mentioned Low Dose Naltrexone therapy briefly and chased this. After reading the stories patients with ulcerative colitis and the results I decided to go and talk to my doctor about it.
He asked me to provide documentation on Naltrexone. After he reviewed this, he refused to give me the prescription for it. When I asked him why he did not give me a reason but just told me that I could not benefit from it.
I decided to see a medical professor I was told about through a colleague. His specialty was to remove colons and do J-pouch surgery. After showing him the documents and a detailed discussion, he agreed to write me a prescription for LDN.
He said it may be worth a try. Worse comes to worst, due to the low dose it cannot harm me. So armed with the prescription I went to the largest pharmacy in the city of Karachi looking for a 4.5 mg dose of Naltrexone. To my surprise they couldn’t understand the concept and told me that they could not make it for me.
After a long search I found a pharmacist who agreed to make it for me. I bought 50 mg tablets of Naltrexone and gave them to the pharmacist to grind and portion the medicine into 4.5 mg. (Please note that only normal naltrexone and not the slow release type should be used).
I started to take the medication in August. At that time I was on 4g of Melasalzaine and an iron supplement. My ulcerations were bleeding intermittently and I had 4-5 washroom visits a day. After I started taking the Naltrexone I immediately felt I suppose an endorphin rush. Initially I was taking my daily dose around 9pm, but this started causing disturbances in my sleep pattern.
After taking Naltrexone for ten days I noticed that my bleeding was much reduced and my washroom visits were more regular. To remedy the disturbed sleep I took the dose after breakfast. I continued to improve and after six weeks I felt well enough to quit taking Melaselzaine.
It has now been almost 4 months. My bleeding has stopped. I visit the washroom 1-2 times a day. I feel stronger and my life is back to normal. I do have remnants of the side effects of the earlier medications but I am feeling stronger on a daily basis.
Low Dose Naltrexone has been amazing for me. It has allowed me to start living my life again. I feel stronger physically and mentally. My motivation is back. There is still a lot of healing that is needed but I am well on my way. Conventional doctors know very little about Low Dose Naltrexone and are generally reluctant to prescribe it since it is not listed as a standard treatment. They would rather prescribe highly poisonous drugs with extreme side effects.