Abdominal Fat and Crohn’s

A recent study from Loyola University in Chicago found that abdominal fat may help people may help regulate the immune system. The study as usual was done in mice by professor Makio Iwashima .The stomach fat is known as omentum which is just a fatty tissue that hangs down from the intestine. For some reason when omentum is attached to damaged organs the tissue heals.

This study may have something to it. For nearly all my life I have been thin BMI (body mass index) even on the low end even for the normal amount. There was a time when I was young where I was a little chubby but as I grew older I thinned out after I started working out once I was 16. Prior to Crohn’s I was working out every day burning 500-600 calories on an elliptical. I don’t know exactly how excessive work out effects the immune system but I have noticed a lot of articles about athletes are diagnosed with Crohn’s.  What I notice is that Crohn’s patients tend to be on the thin side even before they are diagnosed with Crohn’s. I haven’t seen too many overweight people diagnosed with Crohn’s.

Hopefully the effects of omentum on humans can be studied in order to devise some new therapies with fewer side effects then existing drugs for Crohn’s. Gaining weight though in order to get more abdominal fat should not be a policy recommendation since this would raise someone’s chances of getting a heart attack, Type II diabetes, and cancer. 

Gideon Softer: FDA Killing Crohn’s Patients (And Others)

I came across this op-ed in the Wall-Street Journal recently in a case about how a young man who was diagnosed with Crohn’s was fighting for his life. What is even worse is that the author (young man who has Crohn’s passed away last year). The author Gideon Sofer enrolled in a clinical trial after having half of his intestine removed. Sofer was enrolled in a clinical trial for stem cell therapy made by a company called Osiris Therapeutics. The drug called Prochymal had already shown promising results in Phase II and Sofer was entering the Phase III trial. However, clinical trials are randomized and double blinded so the patient and doctor has no idea what drug they are getting. In a short period Sofer became worse yet had no idea if he was getting the treatment or placebo. He and his doctors tried to get Osiris to get more information but the FDA doesn’t allow that. Even though Prochymal had “fast track” status from the FDA in 2007 the drug is still not on the market meanwhile Crohn’s patients and patients with other illnesses can benefit from the drug.

The problem with the FDA is that no drug is too safe for them. Every drug does contain risks and side effects the question is what tradeoffs are people willing to make. I would be willing to bet that a typical Crohn’s patients has much more knowledge about Crohn’s disease than anyone on the FDA panel that approves the drug. Real people are suffering and the FDA controls what patients can use or not use. I would rather see the FDA first check to see if the drugs were safe and then allow patients to determine if they worked. Patients are not uninformed fools. When people make decisions they often go to a doctor (sometimes even two or three), do research, and talk to loved ones. What is even more interesting is that the FDA has made it harder today for a drug to become approved even though we more information than we have ever had about the human body. Everybody has different genetics, biology, and chemistry within their body and to make a blanket statement about a group of people who suffer from the same thing is ridiculous. Even people with rare diseases often don’t have the same exact symptoms which makes the case for how every individual is different and when the FDA claims a drug isn’t effective they forget that some people have benefitted.

Also have you ever wondered why Remicade and Humira are not cheap? Since the FDA limits what drugs enter the market they have a monopoly on what drug companies can offer. Drug companies invest billions of dollars into each drug they research and develop yet only a very tiny percent get approved. So in essence when you pay for the cost of a blockbuster drug you are also paying for the drugs that didn’t work since the drug company is trying to try to recoup some of their investment. If more drugs were approved it would create more competition which would lower the prices of all drugs and in the long run help patients with their illnesses. Also because drugs are not approved information is suppressed about what drugs work or don’t work. This helps to retard progresses in our understanding in how drugs interact with the body.

The tragic case of Gideon Sofer teaches us that the FDA does more harm than good and it’s power should be limited and given to the millions of patients that suffer from not only Crohn’s but other chronic and deadly diseases. The FDA needs to realize knowledge is power and they do an incredible job of suppressing progress. 

Hyperbaric Oxygen for Crohn's?

Stumbling across some interesting research I discovered some work had been done on hyperbaric oxygen chambers and Crohn’s patients. This study looked at Crohn’s patients with perianal disease and said it may have a good clinical effect. Also interesting is that the TNF levels decreased. Since extra TNF is what is believed to cause inflammation. In this study that also looked at perianal Crohn’s disease with 75% of patients being healed and all the patients who got hyperbaric oxygen. Recently, there was this review done of all the studies related to hyperbaric oxygen for inflammatory bowel disease and “HBOT lowered markers of inflammation and oxidative stress and ameliorated IBD in both human and animal studies. One really neat study is what I call the Dead Sea Study which had 6 people go to the Dead Sea in Israel (lowest point where oxygen pressure is decreased and 50% of the patients had a great improvement. 33% (2/6) of patients were able to stop high dose corticosteroids.

Altitude actually may play a role in Crohn’s. This gets even more interesting because at this year’s Digestive Disease Week in San Diego a study looked at showed that patients who made trips to areas above 6,500 feet had more flare ups. These results were not peer reviewed and have not been published yet but seem somewhat interesting. 

Humira Injection and Current Update

      

                Tonight I did my second round of Humira injections. This time it didn’t take as long as the first injections (mostly because of the education part). I wrote out a nine step process for everything that needs to be done. Since Humira does weaken the immune system patients should wash their hands more often (the nurse said to wash double when around children because of germs). It would be interesting to do a study of the bacteria on Crohn’s patients and the outcome of Humira. The past two weeks I have been feeling amazing. Before this period I was feeling really tired and for the first time vomiting at night.  I started feeling a lot of relieve a few days after Humira (even better than when I was on 60 mg of Prednisone.  I am right now on 35 mg of Prednisone and tampering down. For the past few weeks I call my GI on a weekly basis and we discuss how I am feeling and he recommends how much Prednisone to take.  The Prednisone does make me pretty hungry and I have put on some weight (only around 154 but I am 5’11), but I am anxious to see once I go off prednisone how I feel. For the first time in a while I am able to sleep on my stomach (before I usually slept on my back because I felt my stomach was being pushed). At night I use to have pain around my belly area and sometimes on the left or right side. I was originally diagnosed with irritable bowel syndrome which was on my right side and I wonder what role that played in developing Crohn’s.  

                I wonder how long Humira will remain effective. I suppose the next step would be to go on Remicade. If Remicade doesn’t work then I guess immunosuppressant. If all this fails then I guess I will need surgery. However, I might recommend some of my own therapies such as naltrexone or trying the SCD diet it gets to that situation. If medical marijuana were legal in my state I would be curious to try that assuming there was more research done on it. Pig-worms have also shown at lot of promise for treating Crohn’s and I hope they are approved within the next few years. At any rate, I hope to better understand what makes my Crohn’s worse or better and use anything that is scientifically proven to help my condition. 

Artificial Sweetener and Crohn’s?

In a recent news article it came out that maltodextrin or what are known as artificial sweeteners can may make Crohn’s worse. One problem however is that the study was done in a lab and not on people which makes the link between artificial sweetener and Crohn’s loose. The logic is that the artificial sweetener promotes e-coil which is found usually found in the small intestine of those who have Crohn’s. Although, researchers don’t even know what role e-coli plays in patients with Crohn’s

The research wasn’t even really scientific. All the researchers did was place sweeteners like Equal, Splenda, and Stevia into a dish that had e-coli in it and watched it. What is interesting is that Crohn’s patients have a decreased level of mucus in their gut which could lead to more bacteria which would cause inflammation. A better designed study would be to divide up Crohn’s patients into two groups: one group that was fed high levels of maltodextrin and the other with no maltodextin and see what happens. Simply putting something in a petri dish and watching it doesn’t lead to anything useful or value added.

What also should be pointed out is that there is no conclusive empirical evidence that links diet and Crohn’s. If there is any solid evidence I would be changing my diet in a heart-beat. Although, there might be trigger foods for Crohn’s there isn’t any research suggesting that one type of food or even a group of foods benefits Crohn’s patients.

More research should be done regarding diet and Crohn’s patients. For me at least whatever I eat does seem to give me pain. I haven’t noticed one food or another giving me more pain than the other. As I like to say my gut does not discriminate it treats all food as enemies. As I mentioned in a previous blog post I didn’t eat sugar for one week and by the end of the week felt worse. 

Crohn’s Surgery Without Scars? Natural Orifice Surgery

Natural orifice surgery has been around for a couple of years now. The idea of natural orifice surgery is to remove organs through natural orifices (mouth, rectum, vagina, and urethra. This has an advantage over existing laparoscopic surgeries considering there is minimal cutting which reduces the risk of infection and complications. However, only 1,000 of these surgeries have been performed and although they are safe they haven’t been around long enough to show if they are more beneficial than existing methods. Sometimes I wonder if minimally invasive means it is a minimally effective. My guess is that natural orifice is safe as either an open or laparoscopic procedure and in time it will only get better and safer.

                The first procedure was performed by Kurt Roberts a surgeon at Yale University who took out an appendix in 2008. The surgery took less than an hour and half. I would point out that as surgeons do more of these surgeries they not only get better at them but also faster. Dr. Vikram Reddy a surgeon also at Yale University has performed a natural orifice surgery on a patient with ulcerative colitis. The patient had his entire colon and rectum removed with the largest incision being less than one inch. I emailed Dr. Reddy and asked him about the applications of this type of surgery on people with Crohn’s disease. According to Reddy he believes there might be a role depending on where the Crohn’s is located and how severe it is.

If natural orifice surgery was able to be shown to be both safe and effective for people with Crohn’s then it would be an improvement over the traditional approaches of an open surgery or laparoscopic procedure. However, much more research needs to be done on natural orifice surgery.  

Crohn's and Psoriasis: A Link?

In a recent study that looked at close to 175,000 nurses from the period of 1996-2008. It was concluded that people that suffer from psoriasis are at four times greater risk of developing Crohn’s. This shouldn’t be too surprising since both psoriasis and Crohn’s are autoimmune diseases and in some way have to be related.  The authors controlled for things like body mass index, physical activity, smoking, alcohol, and other things. The people who had a higher body mass index, were less physically active, consumed more alcohol, and those who smoked were more likely to get psoriasis. Of course in any study it is almost impossible to control for everything. Also an even more interesting study would be to study the genome of those people who started to see how their  genome changed from the time before they got Crohn’s and compare that to a normal person.

When the study was over there were 188 people who had Crohn’s and 240 who had ulcerative colitis. This would mean that the odds of getting inflammatory bowel disease are around .2%. Apparently interleukin-12 and interleukin are pathways of psoriasis and Crohn’s. This is why Humira works for both people with Crohn’s and psoriasis. Hopefully, this will allow researchers to figure out the relationship between the two and maybe help create more new novel therapies. 

Saturated Milk Fats and Inflammatory Bowel Disease

This article that came out today from the University of Chicago that leads readers to believe that milk fats can change the bacteria in the intestines which may increase the risk of developing inflammatory bowel disease. The key word of course is “may”. In the experiment mice were fed diets that had were high in saturated milk fat and 60% of the mice that were fed high saturated milk fats developed ulcerative colitis compared to only 25%-30% who were fed low fat diets.

Of course, what we eat is only one factor in inflammatory bowel disease. Genes play a part too as well as the environment we live in. Also it is worth noting that trials in mice do not always translate into human results. One reason why I discount this study is for someone to explain to me how we have so many obese people yet so many fewer with inflammatory bowel disease? If diet has such a large role as many claim you would think there would be millions of people with inflammatory bowel disease as opposed to the 1.4 million that is estimated. I don’t discount that diet and what we eat can have a role in whether or not developing inflammatory bowel disease. However understanding what causes inflammatory bowel disease is complicated. What I would question is how much of an influence is diet into developing inflammatory bowel disease. Of course more research and experiments will have to be performed to figure this out. 

Humira: First Injections

Tonight I received my first 4 Humira injections. In all honesty it wasn’t as bad as I thought it would be. We had been having issues with a  nurse coming out (mainly due to an incompetent pharmacy that first sent a nurse who thought she was giving a shot for hepatitis c and who was reading the Humira instructions when she got to our house. We told her we would feel more comfortable with someone who actually had administered Humira on Crohn’s patients.

The right nurse came out around 7 P.M. and most of the time was spent on answering questions like if I got sick to call my doctor and it could take 4-6 weeks for Humira to work. I would label this as legal or disclaimer information.

We then went over the instructions and I took notes of all the steps required to administer Humira. I think I got ten steps in total. The nurse did the first shot and I did the 2^nd, 3^rd, and 4^th. I was nervous about the first injection and was curious how much pain there was going to be. I injected the first in my stomach it really didn’t hurt as much as I thought it would. It really felt as bad as when you banging your arm or shoulder or something and a small stingy feeling. The injection is only for ten seconds.

Although, the medication takes a get into the system I am not really feeling any pain tonight. At night I usually have pain. I also have pain in the morning but this goes away after a bowel movement.  Time will tell how effective Humira is. Until then I will watch to see how I feel and inform of you of any developments in my treatment process.