Update and Real Information about Treatments - TSO, LDN, Lialda, Pentasa, Etc.

I see so much information on this site, a lot of discussions seem to be open ended and never have a definite conclusion as to whether or not a treatment has worked. I will give you an update on what I have tried and am trying.

about me:

DX with moderate/sever crohns a year ago, suffered with symptoms for the last five years. Diarrhea everyday, 5-15 times per day. Diet does not have any effect. Im a male, age 28.

TSO- I have been on TSO for 14 weeks. Ordered it through the tiwanisa website. Currently doing 2500 dose every 14 days. To be honest this treatment has not been effective. I have not actually looked at the TSO under a microscope to see if there are indeed TSO eggs in the solution, moreover if those eggs are actually viable and can hatch. The conclusion I have reached is one of two things:

1. TSO does not cure Crohns. The theory makes sense, however if the lack of helminths or worms was the cause of the disease, then there would be WAY more people with the disease. It may offer some positive effects for some, however it is not a cure, I would not spend your money on it.

2. TSO does help Crohns, but you have to have the right eggs that work. There is no way to know that without a lab and trained professionals, again, this is not a risk worth taking.

LDN- Just started LDN about a week ago. I have not noticed any positive or negative effects yet, taking 4.5 mg every night before bed. I have been having very vivid dreams, by vivid I do not mean odd, I just mean they are very detailed and easy to remember when I awake. No trouble sleeping, my energy does seem a little better.

Meslamine, Pentasa, Lialda- I tried lialda and pentasa, neither did anything, HOWEVER I did have an interesting experience that I plan on trying to replicate again if the LDN does not start working. A few months ago I had the worst acidic d you could ever have, it was so bad that I literally almost went to the ER, and from someone who has it every day, when I say it was bad, I mean tears bad. In an effort to find some relief, I downed 2 name brand Imodium tabs, 4 x lialda and 4 x tums chewables. I managed to fall asleep.

The next morning I woke up and went to the bathroom to do my usual routine. Only on that morning, I had a totally normal BM. I went from the WORST D ever to a normal bowel movement (which I had not had in 5 years) in less than 10 hours. How was this possible? My theory:

Meslamine works like a topical anti inflammatory in the bowel. Considering I pass a meal in about three hours, its safe to assume that just as the medication gets spread, it gets wiped out by excess water and food in the bowel, it never actually has time to work. Its like putting a lotion on your skin, then taking a shower, the lotion will never have a chance at working. HOWEVER, throw in some immodium, which slows down the contractions of the bowel, along with some sleep which further slows down the bowel, then you give the medication a chance to work. I only had a three day supply of Lialda, I replicated the results three days in a row. The only problem I see with this is:

1. There is a "risk" with taking immodium and having IBD.
2. Every day you use the immodium, it becomes less effective

I am going to try this again soon, using a tapered dose of the immodium and cycling it so I do not build an immunity to it.

Now, I am not a doctor, nor am I giving medical advice, or telling you to try anything, I am simply sharing my experiences with the treatments I have tried.

ONE LAST THING: I think all IBD is related to bacteria, in the same way that stomach ulcers are, just different bacteria that colonize in different parts of the digestive system. I believe that the people with IBD do not have an over active immune system, but actually a deficient one; that cannot kill the bad bacteria. Its the same situation with stomach ulcers. We all essentially eat the same things, exposed to the same environments, yet some people get stomach ulcers, others do not. Those who do not have immune systems that is capable of dealing with the bacteria (h pylori) develop ulcers, those of us with normal immune systems never get them. Those who get ulcers have an immune system that is weak or incomplete. Its the same with IBD.

There is a drug now in stage III clinical trials by Red Hills Biopharma, its called RBH104. I think this drug could be the answer to IBD.

I also think that immunity may be passed down by breast feeding, and that the increased use of formula with children is why the instance of IBD and other auto immune diseases is on the rise. Just my theory. If I am correct, we will see more and more IBD cases as the generations continue, each generation losing more people with immunity.

Thank you for posting this, it was very interesting.

Like many here I have been on the crohns train for some time and have tried different things. 10 years ago I was diagnosed but am certain I had milder crohns since childhood.

When I was diagnosed I went into a fish oil study. This study was a complete failure as my crohns went from bad to worse on this study. Even though the study was a failure, according to my doctor with other patients, I did learn something, oil in general is not good unless taken with other foods.

My doctor prescribed Nexium due to my acid reflux. When I started taking the Nexium I thought it was the cure as my acid reflux went away and I felt much better. In those days I would drink quite a bit of beer at the cottage and other social gatherings. Even thought I felt better my bowel movements were always very loose.

I went for the next 8 years walking sick as my doctor called it. We seem to build a tolerance to being sick and it almost becomes normal. I switched from Nexium to Tecta (same thing) and my blood tests started to change. First I had to increase my vitamin D a few times over the past 8 years and am now taking 3500ui of vitamin D. Then in the summer of 2012 everything changed.

July 2012 my Crohns took a turn for the worse. Every week it seemed a new symptom would appear, from joint pain, to more bowel movements to gut pain, etc. In October I took a business trip to China and my gut turned much worse. By January I was in the hospital and it felt like a knife was in my side. After a CT scan and ultrasound, it was clear my ileum was very inflamed and the doctors put me entocort. I saw my GI and he immediately scheduled me in for a colonoscopy. The result of the colonoscopy showed my ileum was very bad right where it connected to my large intestine. My GI told me I would need surgery but first he wanted to get me into a new clinical trial on a drug that seemed promising. I signed the paperwork right in the OR room because the last day for registration was that day.

In February I had another trip to China scheduled and my GI asked me not to go but this trip was a must. I was prescribed prednisone just in case things got worse, was also given oxycocet in case the pain was bad. My doctor warned me not to eat any stringy vegetables like bean sprouts.

My trip to China caused my crohns to worsen, partly due to not enough sleep but partly due to diet which I will explain later. I ended up switching from Entocort to prednisone and was taking pain pills like candy.

I arrived back in Canada and was in such bad condition. A friend of mine suggested I try Marijuana. I was very reluctant but due to my condition I gave it a try. Upon taking my first dose I felt the pain leave right away, and I was hungry so I ate. The next 3 days I was pain free from a single dose.

I was in the GI office and told my GI about my experience, he said many have asked him for a prescription but he always thought they just wanted to justify using MJ for recreational purposes. My GI and I became good friends over the past 10 years, and many times I would take him fishing or we would have dinner together. He knew that if I told him I had a positive experience with MJ then it was true.

I went on the Clinical trial and the drug seemed to be working. I was getting better, then the company said they will keep me on the trial for 5 years. I was very happy. Then one month later they pulled the trial, apparently there were people that had heart attacks. I was pretty upset because this worked so well. My doctor asked me what I was going to do. I told him I will give MJ another try. He did not say anything. This was in June.
In July I went to a trade show, just prior to the trade show I ate some pea soup and was in likely the worst pain ever. Actually I ate 2 bowls it was so good. At the trade show I ate some lentil soup and again had extreme pain. I decided to cut all bean or bean related plants included soy ( there is soy in almost all processed foods including crackers etc.) beans, peas, peanuts every thing that was related to beans. I also stopped drinking alcohol since it thins the lining of the intestines.

My next trip to my GI on a scheduled appointment. I arrived at his office. His words were that I looked very healthy and happy. I told him that I was feeling great. He asked if I was still using my treatment and I replied every day. My pain was gone, my stool was solid and I was in complete remission. then he said since I was in remission that I should go on a maintainance drug called Imeron. I told him I was reluctant since I was doing so well. I have so much energy at 49 I feel like I am 25. Have not felt this good for decades.

I switch from smoking mj, which I never liked, did not like the high and did not like the damage I was doing to my lungs. Now I make Rich Simpson Oil and take an amount equal to a grain of rice every night before bed.

For me I believe, like many with crohns, I have alergies to bean related plants. Alcohol or spicy foods only irritate the lining of my gut, it's like putting fuel onto a fire. In one year I plan to trying alcohol again to see if my intestines can handle it. I believe MJ works due to the cannabinoids helping my gut cannabinoid receptors.

I will try Charlottes web MJ which has a very high CBD count and very low THC. This way I will get the benefit of the MJ without getting high.

PA, we're you on the GSK trial? Just curious, I thought that one was working (somewhat), for me before they pulled it.

Sorry, I see that you mentioned the Red Hills trial, not the GSK one.

I hope LDN works for you, I take it and feel that it helps. In my experience GI doctors will be happy to provide the regular meds, and even help get patients signed up on clinical trials, but when it comes to the alternatives you are on your own. Personally I've had a terrible experience with regular meds, some come with extreme and non reversible side effects, although for many people those drugs are life savers.

I think it's great that you are doing your research and trying the alternatives first : )