Top 2013 Crohn's Stories

So this year has been a very interesting year in terms of Crohn's research. Here are my top Crohn's/IBD stories for 2013...

Possible Crohn's Cure: Anti-MAP?
     There has been a long debate as to what actually causes Crohn's. There are multiple theories but one theory by Dr. Saleh Naser at University of Central Florida (he has been studying this since 1995) is that a bacteria known as mycobacterium pratuberculosis (MAP for short) is what causes Crohn's. It is believed that 40-50% of patients have MAP in their bodies. In order to fix this RedHill Biopharma is licensing Dr. Naser's technology to develop RHB-104 to treat Crohn's. Redhill Biopharma is already conducting Phase III clinical trials and results won't be expected until 2015-2016. However, if this drug really was a cure I could see the drug being brought to the market very quickly. I personally believe this treatment would help me more since my Crohn's started around the same time I had bronchitis and the only flare up I had was when I took an antibiotic which leads me to believe that antibiotics are what seem to be creating the issues.

Vedolizumab Works For Ulcerative Colitis (UC) 
     A new blockbuster drug may be coming soon to a drug store near you. In this trial 47% of patients responded to the drug (compared to a 26% placebo rate). Clinicial remission was about 42% after one year (which is pretty good). There were difference in adverse effects in the placebo group compared to the patients that received the drug. The results for Crohn's disease were mixed. However, once if the FDA approved vedolizumab for UC then doctors may try it with certain types of Crohn's patients to see if it works. The FDA can only regulate drugs and not the practice of medicine.

Cold Water Helps Guy Get Off All Drugs For Crohn's
     Probably the coolest (pun intended) was the story about a guy (Robb Starr) who jumped into chilly water which immensely helped his abdominal pain related to Crohn's. This story lead me to conduct my own research and I did feel quite amazing right after a cold swim (your body does get use to the water after a few minutes). He even woke up at 3 a.m. in pain and went for a swim which after a few minutes would make him pain free. Six years ago he stopped taking all medications and now is not taking anything. Maybe researchers can actually study this by measuring inflammation markers before and after and have patients take a cold swim for 6 months and do a before and after colonoscopy along with some CDAI scores.

Thalidomide Helps 46% of Pediatric Crohn's Achieve Remission
     Perhaps one of the better stories this year was thalidomide showing that it is effective in Crohn's. The trial was  done for just 8 weeks but done over a 4 year period. Longer term studies are needed to study the side effects of thalidomide to see not only if it can induce remission but to make sure it is safe.

Pigworms Failed For Crohn's
     Unforuntately we learned that Cornado's pigworm treatment for Crohn's didn't live up to its promise. I did a full post on Coronado Biosciences here. The trial didn't met the clinical endpoint (drop of 100 points in CDAI). However, it should be noted that patients with a high CDAI (>290) did show an improvement. Prior studies have shown pigworms to be quite effective. With this study showing 86% remission for Crohn's and this study showing 80% of patients had a response.

The good news for the pigworms was that came from initial data that showed the treatment may benefit patients with autism (it is believed that autism is autoimmune as well). Results from this trial are expected by the middle of 2014. The study was only 5 autistic patients however they showed much improvement in their symptoms. The Coronado Biosciences stock was up 33.7% that day as a result of the good news. The company is currently conducting studies for the pigworms in psoriasis patients and results are due out in first quarter of 2014.  In essence, Coronado just has to hit one major disease (psoriasis, Crohn's, multiple sclerosis) to be a hit.

Fecal Transplant Effective in 67% With Ulcerative Colitis, 33% Show No Signs Of Symptoms After 
     I mentioned in this post how fecal transplants were effective in patients with ulcerative colitis. In the study done by Dr. Sachin Kunde 78% of patients achieved a clinical response within one week and 67% of patients maintained a response after one month. What is very interesting is 33% of patients didn't show any symptoms of ulcerative colitis after their fecal transplant. The study was only limited to children and there were only five infusions. I would suspect if you continued to do fecal transplants (via enema) you may have more success.

Biologics Reduce Stomas by 33%
     Patients with Crohn's always wonder about whether or not they will need a stoma. This study looked at patients who had surgery before biologics (pre 2002) and those who had biologics (post-2002). 61% of patients in the pre-biologic era had a permanent stoma while only 20% of patients in the post-biologic era had stomas. This study from the early 1990's shows that only about 7% of Crohn's patients require a permanent stoma and 20% require a temporary stoma. However, in the early 1990's minimally invasive surgery was just coming on to the scene which would reduce the percentage of stomas required and pre-biologics which are now reducing the number of stomas required.

Weekend Links: IBD and Race, Surgery Rates IBD Falling!, Vitamin D & Crohn's, Paneth Cells, and Poop Pills

Risks of Inflammatory Bowel Disease Between Racial and Ethnic Groups
This article discusses the rate at which various types of ethnic groups get diagnosed with IBD. What I also learned is that it is estimated that 1.8 million adults have IBD (usually the estimate is around 1.0-1.1 million).  What is interesting is that Non-Hispanic Whites have the highest rate (70.2 people/100,000 people) while Hispanics have the lowest rate at (9.9 people per 100,000). However the article concluded that deaths and hospitalizations and deaths from IBD was higher in Non-Hispanic Blacks. So to summarize white individuals are more likely to get IBD, however African Americans are more likely to be hospitalized and die from it.

Changes in medical treatment and surgery rates in IBD (1979-2011)
Long term studies like this always interest me. This study found that the chances of requiring surgery (for Crohn's disease) over a 5 year period have decreased from 44.7% (if you got diagnosed between 1979-1986) to 19.6% (if you were diagnosed between 2003-2011). I was diagnosed in 2011 so the percentage might actually be lower since people didn't  use biologics until after 2008.  The requirement of surgery for UC also decreased from 11.7% (if diagnosed from 1979-1986) to 7.5% (if diagnosed between 2003-2011). I have seen other studies that show the cumulative risk of surgery increases over time. However, other factors like how severe the disease is, the age at which you are diagnosed, and the location of the disease can play a factor in when you need surgery and how often.

Stool Banks for Fecal Transplants: Crap Now Worth Something!
As someone who earlier this year had c difficle and then a fecal transplant at the Mayo Clinic I am always interested in fecal transplants. This story is interesting in that Dr. Lawrence Brandt believes that in the future there will be stool banks just like blood and sperm banks which makes sense consider the stool can be used to save people with c difficile. What would be interesting is people actually getting paid for their crap! What would even be more interesting is if certain stuff is more valuable in terms of a curing c difficile. Also if people knew they could get paid to donate their stuff they make have an incentive to take care of themselves and not do things that may exclude them from being a donor (taking an antibiotic, living a risky lifestyle, etc.). Fecal transplants are also being studied in other disease such as Parkinson's, obesity, and even IBD. It would be nice to study if certain fecal material is better than others in helping people with these horrible illnesses.

Too Much Vitamin D for Crohn's Patients?
This article on vitamin D is interesting because it often contradicts what I have heard saying that people with Crohn's usually have low levels of vitamin D. What is interesting is right before I was diagnosed with Crohn's my doctor told me to take a vitamin D supplement (which in all honesty does make me feel better when I take it. The research was done by Dr. Maria Abreu (she is with the University of Miami IBD department). In the study (which is in Gut magazine) showed that Crohn's patients 42% of patients have "inappropriately high" levels of vitamin D levels. The same was true for 7% of patients with UC. The theory is high vitamin D levels are most likely a manifestation of the underlying gut inflammation.

New clinical trial for antibiotic to help Crohn's (possible cure?) 
Dr. Saleh Naser out of UCF College of Medicine has spent 18 years studying mycobacterium avium subspecies paratuberculosis (MAP) in Crohn's disease. There is a debate in the scientific community as to what actually causes Crohn's disease. Dr. Naser is trying to enlist 240 patients in a clinical trials for basically what is an antibiotic therapy. There is also a test being developed to see what patients have MAP in their systems in order to determine who would benefit most from the new treatment. What is very promising is that Dr. Naser believes that patients with the treatment may instantly improvement and this could possibly believe a cure for Crohn's if MAP is truly the underlying cause.

Paneth Cells Role in Inflammation for Crohn's Disease
According to this article from Nature . This Science Daily article breaks the research down into plain English. What the research shows is that there may actually be subsets of Crohn's disease. What was learned is that Paneth cells' play a role in inflammation for inflammatory bowel disease. Hopefully, this will lead to more targeted therapies for Crohn's.

Poop Pills: Now Serving C Difficile Patients
Speaking of fecal transplant apparently Dr. Thomas Louie out of University of Calgary developed a "poop pill" to help people who suffered from c difficile. I know people in the media will say "poop pill" how gross and make fun of the name. However, there is nothing funny about c difficle (I know I have been through it and felt like I was partly dying). At any rate, 32 patients were treated with the pills and didn't have a recurrence of c difficile which is a 100% success rate. If fecal transplants could be done in pills instead of via colonoscopy it would be far cheaper, easier, and free up doctors to do procedures on people who might need them more (people who may have colon cancer). This pill came faster than I thought. I thought it would take many years to develop this but apparently it is here faster than we could have imagined.

FDA Proves Utter Incompetence in Regulating Fecal Transplants: 2,000 People Will Die As A Result

Recently the FDA issued vague and unclear ruling on regulating fecal transplants. When I first saw this I was quite enraged, upset, however not too surprised. On May 2-3, 2013 the FDA held a conference which was preceded by this letter in Bethesda, MD to talk to doctors who were performing fecal transplants.  The FDA is now requiring an IND and treating fecal transplant as a biologic which has pushed back fecal transplant for nearly everyone by 2 months. In reality it will take 2 months for the FDA just to get around to this subject let alone do anything about it.  If 14,000 people die from c difficile every year that would say that the FDA will contribute to the death of over 2,000 people.

What is quite interesting is that fecal transplants have been performed since 1958 yet I have never heard of any serious adverse affects or deaths. According to a 2011 ACG meeting about 5% of patients who received fecal transplants also contracted an autoimmune disease after they got the fecal transplant. However it is hard to say if it was from the fecal transplant or something else. It is important to remember that people do actually die from c difficile. In fact the New England Journal article from this January showed that 94% of patients were cured of c difficile compared to the only 31% who received vancyomycin. Even the people running the study said it was unethical to not give the patients fecal transplants.

Dr. Mike Edmond might be the only doctor with some sense on this matter. Basically from the way he explains it doctors will have to apply for an IND number (doctors have to submit their protocol). Then maybe 30 days after the FDA gets the information they will let the doctors know if they can proceed. The FDA won’t even let doctors know what they are looking for.

Just how incompetent is the FDA? Here we have a treatment that cures 80%-90% who have a life threatening illnesses with the only existing therapies being antibiotics such as Dificid and Vancyomycin which can costs thousands of dollars while the fecal transplant is much cheaper. Thousands of fecal transplants have been performed as well.  However there never seems to be enough data for the FDA. Perhaps the FDA is incapable of performing a cost/benefit analysis. Actually the most expensive part of the fecal transplant is testing the donor’s stool. However, since the FDA has not approved fecal transplants insurance companies won’t cover it.

The result of the new FDA ruling on fecal transplant will cause more paperwork for doctors, more bureaucracy, more patients having to suffer, and more people dying because the FDA doesn’t seem to think anything is safe enough. 

Fecal Transplant Cures C Difficile! Fecal Transplant for Crohn's and Ulcerative Colitis

Recently, this New England Journal article came out showing that 100% of patients who had a fecal transplant for clostridium difficile (c difficile) saw improvement. Usually the treatment for c difficile is taking vancomycin which can cost $55 per ill (ending up costing $2,000 or more over the course of treatment).  This is great news for people with c difficile. Upon doing further research I learned that this procedure now is being experimented on (not formally though for patients with ulcerative colitis and Crohn’s disease). One great piece of literature I found was this meta-analysis which essentially looked at every single study done on fecal transplants for inflammatory bowel disease. Nearly all the studies so far have only been for c diff and not for inflammatory bowel disease.  One conclusion from the meta-analysis was there was a reduction or complete resolution of symptoms in 76% of patients and prolonged remission in 63% of patients.

Dr. Thomas J. Borody seems to be an expert in fecal transplants. He is based in Australia and has done some good research in the area. He did his first transplant according to this article in the 1980’s on a woman who had incurable colitis. It seems after the transplant her colitis never came back. What we need is more experimentation like this in order to get medical advancements. The problem today is the red tape involved with the FDA or federal government that prevents people like us from getting the treatments we need. Borody has performed over 1,500 transplants and currently does 5-6 fecal transplants a week (most are for irritable bowel syndrome which I actually was diagnosed with in February of 2012 in the same year I had Crohn’s). He has even use fecal transplant for non-stomach related issues like acne, multiple sclerosis, and even people with Parkinson’s disease.

In this study of 6 people that Borody conducted with ulcerative colitis all 6 had no signs of ulcerative colitis after 13 years! I looked on Dr. Borody’s website and it seems you can get a fecal transplant for $12,000-$15,000 (in Austrilian dollars which is about the exact same as American dollars) which is just for the transplant and doesn’t include travel or even nursing care. If this could really could help “cure” Crohn’s I really would consider it. However, there are too many unknowns like a) will it work b) how long may it work c) possible side effects and complications. One major problem in the United States is that the FDA has not approved fecal transplants which makes it hard not only to help people but increases the costs of fecal transplants. Insurance companies will not often pay for something that isn’t approved by the FDA or lacks evidence. As more data comes it showing that fecal transplants can help c diff patients that will change. However, we need experimentation with other conditions like Crohn’s, ulcerative colitis, and other autoimmune diseases to really get the ball rolling.

Other doctors in the United States have performed fecal transplants as well. Dr. Alexander Khoruts of University of Minnesota has performed over 130 procedures according to this article. Dr. Colleen Kelly has performed 45 procedures according to this article. Dr. Lawrence Brandt has performed 17 of these procedures (he has been doing it since 1999), while Dr. Christina Surawicz of the University of Washington has performed 16 procedures. Dr. James Versalovic of Baylor College of Medicine in Houston plans to start a intestinal microbiome transplantation program.

Due to the fact that fecal transplants are not approved yet many people are doing it themselves at home. I found and interesting website where a guy who had ulcerative colitis for 12 years did at home fecal transplants and now is in complete remission (he started feeling much better only after 2 days). This sounds good to some people but I personally worry about whether people are doing it correctly, the risks involved, and these people are also not screening the poo that they use to transplant which can present risks.  Right now donors are usually family members or relatives since their medical condition is usually known. The largest cost of the whole procedure is screening the donor which can cost $1,000 according to this article.

This article discusses how the fools at the FDA seem confused since “feces” doesn’t fit into anyone of their main categories. We need many doctors and patients experimenting with fecal transplant in order to spread knowledge of the best way of doing the procedure. Knowledge is power. It looks as if fecal transplants may have a role in ulcerative colitis but time will tell if it can help for Crohn’s. I would also wouldn’t mind seeing a market for feces where people could give it and collect money for it like they do for sperm or blood. Companies could pop up that would screen the feces and could grade it and let people decide which kind they wanted to supply. I have a feeling drug companies might be interest as well because they pay be able to find a mechanism that works similarly like feces to give the same result. Given there are 500,000 cases of c diff every year we will need a lot crap. Also it would be interesting to see if fecal transplants can help other autoimmune diseases like psoriasis, rheumatoid arthritis or other things like acne, Parkinson’s. Every day that goes by is another day a patient suffers. People need to get over the gross factor and we need to start doing things that are proven to work. 

Health Update and C Difficle Cure

I am not sure if I am entering another flare or not. Although, I am not a GI I think eating a brownie sundae both Friday night and Saturday night did not help. I am working this week on my diet to see if I can shake it off. My stools are somewhat loose however I don’t have much pain. The pain I had in the last flare up I was staying up at night and could feel the stabbing pain in my stomach. There have been some instances where I have had a flare for one day and then the next day I am perfectly fine. Next week I see my GI and I have a bunch of questions for him so hopefully that will help.

In somewhat IBD related news there now might be a possible cure for c. difficle with “fake” stools. Researcher Dr. Emma Allen-Vercoe and her research team created an artificial stool which is grown in the Robo-gut (looks like vanilla milkshake). The procedure is seen as a super probotic. Normally fecal transplants are done which can knock out the c.diff but is not pleasant for patients. Doing the fecal transplant repopulates a person’s colon.

When I was in the hospital my father was 110% sure I had c.diff. He kept asking the doctors to run stool analysis tests and he researched the way stool analysis had to be done and my GI told him that he was pretty sure it was Crohn’s before the colonoscopy and then confirmed I had Crohn’s after.

I would love to see this tried first in more people with c.diff and then people with IBD to see if there is any help it can provide. The problem is often times these things can take years to get onto the market because of approval, compliance, regulation, and other burdensome requirements.

  

Crohn's 2012 Year in Review: 7 Months on Humira Still Working!

I was going to write a Crohn’s year in review but got a little side tracked with studying and work. So in less than a week I will have been on Humira for 7 months and still no pain (which even I am surprised about). No real side effects. The only thing I really had had was related to dental issues with plasma cell gingivitis. I plan to see my GI and show him the report the oral pathologist wrote. I downloaded my WellsApps report on December 31, 2012 (it was over 75 pages). I wish I could just plug it into Excel and do some analysis in there. The only other app I wish for is one that asks you your weight. I would think if you were having a flare up you would be losing weight pretty quickly and that might be an indication of something going wrong.

Right before Christmas I went to Dallas to visit an old roommate from college. I honestly never felt better in my entire life (even though it only took me 3 ½ hours to get from Houston to Dallas driving). I thought I was having a cough right before the trip (left on a Thursday came back on Sunday). My internist prescribed clarithromycin which seemed actually I think helped me even more! I did some research and this article seemed to show that it does help in the short run but not in the long run. During the trip I went to In-N-Out and ate a double double with fries. Burger tasted one step above heaven fries need work. Went to Braum’s and got a double brownie sundae. The last day I went to Krispy Kreme and got a dozen donuts for my family (plenty of Christmas donuts). I actually didn’t feel much pain the whole time. I was doing an experiment to see impact on food and it seems as if food didn’t win.

In terms of research 2012 was a great year. In December 2012 200 genes were found related to Crohn’s (currently more than any other condition). In November a woman claimed eating bark cured her Crohn’s.  This story I recently sawed happened in 2009 but the trend shows kids that from 1994-2005 there was a 33% increase in the children’s population. In October Michael Seres who suffers from Crohn’s received a bowel transplant. Also in October STELARA was shown to help patients with Crohn’s. In September Humira was approved for ulcerative colitis (I hope they are doing well!). This study in September showed that kids who take antibiotics are at an increased risk of getting Crohn’s. In April the MAP test was talked about as a new possible additional test for Crohn’s. In February vedolizumab was shown to be beneficial. In April I also posted this video of a patient who had improved on SSI treatment and was able to have a kid (remission rate was 75% which is quite high. I do look forward toward 2013 and what new research comes out or if any novel treatments show improvement for IBD. 

So I started WellApps on March 8, 2012 and use to kept track of food however after I started Humira and felt no pain I thought why bother? It is pretty cool looking at what I use to eat. I can actually remember certain meals I had even though they were 10 months ago. Seems to be easier to remember when you write things down. So from March 8, 2012 until when I first started Humira on June 6, 2012 MyQOL was 9.5. I had about 1.6 bowel movements per day with a low 1.1 level for pain. However when I did a week before I started Humira MyQOL was 7.8 bowel movements was 1.6 (most were mixed and not solid and my pain was 1.7). I was also holding my head over the toilet at night vomiting during late May from what I remember.  For some reason I think I have a high threshold for pain since I didn’t even know I had to be hospitalized originally. These days MyQOL is a perfect 10 having .5 bowels movements per day (all solid) and 0 pain which is amazing. 

My goal for 2013 is to remain in remission and avoid the hospital. I hope Humira continues to work its magic has it has been almost 7 months already. Hopefully we will continue to learn more with each passing day about this dreadful disease and find research that can be translated into something practical that can not only benefit lives but stop the pain. 

Xelijanz (Tofacitinib) for Crohn's?

In this FDA press release a drug called Xelijanz (tofacitinib) was approved for rheumatoid arthritis (autoimmune disease like Crohns). This trial showed that patients improved when taking the drug twice a day (at 3 mg) over a 6 month period. Here is a great article that includes tofacitinib along with other possible upcoming treatments for Crohns. Pfizer (the drug company who made this drug) has every incentive to test this drug for other autoimmune diseases. What I have noticed is that one drug can treat many different things (Remicade and Humira treat multiple autoimmune diseases).

One a drug is approved by the FDA it can be used for what is known as “off-label” use. The FDA can’t regulate the practice of medicine so in theory a doctor could prescribe tofacitinib for Crohns however he may have to have the patient consent to some things before hand. Crohns patients who are chronically ill need all the help they can get. We want as many possible tools as possible to fight something that is awful, painful, and makes us worry all the time. Allowing the FDA to get out of the way an let informed patients and doctors experiment could work wonders.

Cure For Crohn's: Eating Bark Help Crohn's?

I recently came across this story which talks about a woman named Marlene Barnes who is a 72 year old woman who has Crohn’s disease and has had it for 48 years. She got it when she was only 14 and had to get part of her colon removed.

This story gets interesting as Barnes cutting bark off trees, letting it dry, and grounding it up in her home.  I have a few issues with this story. First, her doctor claims she has “no evidence of the active disease”. This could just simply mean that her Crohn’s is in remission and is not active. What I would want a GI to do is to examine her colonoscopy compared to someone who doesn’t have Crohn’s and see how different they are. Second, this is only one person who has one body that is different from everybody else. I would want to see some large scale trials done to see the safety of this and whether or not it is effective. I do hope tree bark does help those with Crohn’s however until the data arrives I will be otherwise unconvinced.

This leads me to a larger point of people believing everything they here. As the commercial says “Where did you hear that? The Internet”. We can’t believe everything we see, hear, until there is some hard evidence to back it up and more than one trial to prove it was not just a fluke or luck. I hope the CCFA will look into this and possibly look at doing trails. Marlene Barnes could be sitting on a gold mine if this really works. I know I would be barking away if it was shown to be both effective and safe!  

Michael Seres Crohn’s Transplant for Bowel

I saw this pretty cool story about Michael Seres who got a transplant for his bowel. Michael who is 42 years old for the past three years had to have feeding tubes in order to eat like a regular person. Michael has had Crohn’s since 1982 and already had 20 surgeries (poor guy!). His bowel went from 197 inches to 27 inches. The procedure Michael had is still risky (only 10 are done a year). Rejection of the tissue transplanted to the new bowel is a concern. Michael had to stay in the hospital for three months because his immune system was so weak. These days he is back to eating regular meals.

Hopefully, the procedure Michael had will be studied more to where it can be safe and effective and present as another option for people with Crohn’s. No question the procedure will get safer and better the more times it is done. 

STELARA (Ustekinumab) Promising Results for Crohn's

I was thrilled to see that STELARA (ustekinumab) seems to help Crohn’s patients in this study just published by the New England Journal of Medicine. The drug was approved for psoriasis in 2009 (interesting how so many autoimmune drugs work for so many various things! STELARA in the trial was used after one TNF drug failed (Remicade, Humira, Cizmia). The results showed that 40% of patients saw a decrease in their CDAI (Crohn’s Disease Activity Index). The drug was given every 2 months via I.V. STELARA works by targeting interleukin-12 and interleukin 13 which plays a role in Crohn’s disease. The trial was pretty large with 526 patients (which means it also was very expensive to run the trial). Around 40% of patients had a clinical response by the end of 6 weeks which was greater than the 24% with the placebo). On a side note it seems risky to be injecting a placebo into patients with Crohn’s.  In addition to this 31% of patients who took usterkinumab were in remission didn’t need steroids.

Although the drug is not approved yet I personally would take it seeing its benefits and a trial from last year showed that it has benefits for Crohn’s patients. I hope the FDA will approve STELARA for Crohn’s patients seeing how it is effective and seems safe (no adverse side effects). Approval for this drug would also create more competition for treatments which would bring the costs of TNF drugs down which benefits consumers.

Colon Cancer and Crohn's: How You Can Reduce Your Risk

One of the things I hear is that Crohn’s patients are at greater risk of getting colon cancer. Me being the researcher I am decided to do some research to see what the causes of colon cancer are and if anything can be done to prevent it.

This study puts the risk of getting colon cancer at 7% for Crohn’s patients after having the disease for 20 years. The risk was greater for patients who get it younger than 25. However, this meta-analysis (combined multiple studies) at least for ulcerative colitis found a non significant increase in risk over time for colon cancer.  This study shows that ulcerative colitis and Crohn’s only account for 1-2% of all cases of colon cancer however accounts for 15% of the deaths related to inflammatory bowel disease. 5-ASA’s do seem to help reduce the risk. This study which studied patients from 1940-2001 showed that there as only a slight increase in the risk of getting colon cancer for Crohn’s patients (6 patients got colon cancer vs. 3.2 that were expected).

So what can we do to reduce the risk of colon cancer? I am glad you asked because I did some research and found in this study (in men) cutting back on red meat, eating beef, pork, or lamb less than 5 or more times per week. Poultry, fish, dairy products, and vegetable fat can slightly reduce the risk of colon cancer.  This New England Journal of Medicine article that studied woman found that woman should avoid eating animal fat because it increased the risk of colon cancer and substitute fish and chicken for meats high in fat. This study showed that low physical activity in a physical job can lead to an increase risk in colon cancer.

A company called Exact Sciences is trying to create a better screening for colon cancer. The test is known as Cologuard and could hit the market by 2014 if the FDA approves it according to this Barron’s article.  If you get a colonoscopy done and precancerous growths are caught early enough they can be removed during the colonoscopy. The problem is that more than 50% of colon cancers are diagnosed in the late stages when death increases dramatically.  The test is pretty easy and just requires a stool sample that is sent to a lab to see if it has precancerous growths. The cost may cost $300 which is still much more than stool-based blood tests.

On the drug side the FDA just recently approved a drug called Stivarga which helps for people that have the cancer spread to other parts of their body. The drug extended life almost 6 and half months.

The policy recommendations for reducing risk of colon cancer are avoid meat (eat chicken or fish instead), work out, get a colonoscopy, and if something is wrong talk to your doctor for early detection and you should reduce your risk of getting colon cancer.

Olmstead County, Minnesota 1970-2004 Crohn’s Study

I saw this recent saw this article in the Journal of Gastroenterology (my night time reading) that studied a group of people from Olmsted County, Minnesota. The study is ongoing and looked at people from 1970-2004 (updated from 2001). The study concluded that the cumulative probably of having major abdominal surgery were 38% at 5 years, 48% at 10 years, and 58% at 20 years.  The major factors that were significantly associated with major surgery were being male, smoking, early steroid use, and penetrating disease behavior. What seems to be positive though is that if you look at this chart that shows the cumulative risk of having surgery after being diagnosed in different decades.  In recent times it seems that the people who were diagnosed in the early 2000’s who are a little below 10 years from diagnosis have the lowest risk out of all the decades of having to have surgery at around 35% (which is down from 60% which is was in the late 1970s). Also remember Humira was not introduced for Crohn’s until February of 2007 which may bring down the requirement for surgery even more. My gastro doctor had told me one time that with Humira he was seeing fewer and fewer patients in the hospital and fewer requiring surgery which fits the data. What was also interesting is that people claim Crohn’s has a genetic component to it (however even my gastro doctor said none of his patients had family members who have it and neither do I) and the data in this graph supports that as close to 86% of patients have no family history of inflammatory bowel disease.

This data makes me feel a little bit better. With the cost of genome analysis going down it might be interesting to see if certain genes affect who has to get surgery or multiple surgeries. Although the odds are by definition I will need surgery I think I will be able to handle this and hope it is years away when the technology will improve and perhaps down without a scratch with NOTES as I mentioned in this post. I will be honest the thing I am scared of most of having an ostomy bag.  I know other Crohn’s and ulcerative colitis patients worry about it and I would even be okay with a temporary one if I had to but a permanent one would scare me just a little bit.  

Antibiotics, Kids, and Crohn's

In this recent article it could be possible that antibiotics increase the risk of inflammatory bowel disease (IBD) in kids. According to the article, IBD has doubled over the past 10 years. The study followed more than 1 million children. The kids that were treated with antibiotics were more than five times likely (84% increase) to get IBD then those who never got the antibiotics. What is interesting is that when kids were given antibiotics at older ages they had an increased risk of getting IBD but not as much. The theory of why this may happen may be due to the fact that antibiotics kills both good and bad bacteria.

I am somewhat sympathetic to this argument (although not 100% convinced). Growing up I had what they called isolated asthma and had a history of getting sinus infections (usually in the spring and fall). Usually I was prescribed antibiotics to treat these colds or sinus infections. As I mentioned in my personal story of Crohn’s my history right before Crohn’s. Right before I had Crohn’s I had bronchitis and my doctor over the phone prescribed me some antibiotics (at first I thought the drugs I was given contributed to Crohn’s however I learned later that they actually helped). I wasn’t getting any better and started to have the diarrhea (which was a side effect of the drug I was taking). Never in a million years would I have guessed it was Crohn’s. My gastro doctor diagnosed me with irritable bowel syndrome (IBS) in February of the same year. My internist believes that it may have sped up getting Crohn’s. I personally believe me working out vigorously, not probably eating the best, and taking antibiotics for years had something to do with getting Crohn’s. Throw in maybe some genes (nearly all my family suffers from some type of autoimmune disease) and we have a recipe for Crohn’s. My goal is to one day know what caused my Crohn’s. 

Bone Marrow Helping Crohn’s Patients

In this recent article it is speculated that Crohn’s and colitis could be treated with bone marrow.  Pam Fraker of Michigan State University was one of the lead author’s of these results in the current issue of the Proceedings of the National Academy of Sciences. Fraker theorizes that if it were possible to reduce bone morrow’s ability to produce inflammation then it could reduce the severity of Crohn’s and colitis.

In June it was announced here that the Fred Hutchinson Cancer Research center was doing a study on allogeneic transplants for Crohn’s patients. What they essentially were doing is replacing the diseased immune system for a healthy one.  It should be known that in the United States there is a shortage of bone marrow (causing innocent people to die). In the United States it is illegal to sell bone marrow (which creates the shortage). The problem is anyone can claim they want to donate bone marrow. However there is nothing binding the person who promises to give bone marrow to actually give it. A website MoreMarrowDonors.org is trying to fix that by offering $3,000 scholarships, housing allowances, and other incentives to get people to donate. If people had more incentives there would be more bone marrow which would lead to more experimentation which would give us more knowledge about not only Crohn’s but other diseases as well. 

Pig Whipworm Treatment for Crohn's and Autoimmune Diseases?

A recent news story came about pig whipworm treatment for Crohn’s. Basically the idea is that the worms is based on the “hygiene hypothesis” which basically states that autoimmune diseases are higher in countries with higher levels of sanitation. In countries that are not as sanitized they are exposed to parasites which seem to make autoimmune diseases less likely. In a related note recently Coronado Biosciences (maker of the genetic pig whipworm) was granted a patent that doesn’t expire until January 2029. According to the clinical trial information here the trial should be complete by August 2013. A partner of Coronado, called Dr. Falk Pharma GmbH is also doing a clinical trial that will be completed by December 2013 (however it began in November 2010).

This news story from ABC talks about a man who actually ingested the worms and felt better. The 33 year old man ingested 2,500 worm eggs every 2 weeks for 3 months (the man had the disease since he was a teenager). What is interesting is that most of his Crohn’s symptoms disappeared. For those grossed out by worms they are microscopic and can't be seen in water. In fact the guy who took the worms just said it tasted like salty water. The inflammation markers in his blood also decreased as well.  He however had to stop because the treatment was costing around $4,500 (mainly since it is not FDA approved ).

A trial is now being conducted by Coronado Biosciences. The company is enrolling 220 patients using 7,500 pig worm eggs every 2 weeks for 3 months. Some prior studies have yielded pretty good results. This study showed that 79.3% of patients showed a response with no adverse affects.  In this study  from 2004 (looked at colitis and not Crohn’s) after 3 months of treatment 43.3% of patients saw improvement. I should point out that the worms were from the United States Department of Agriculture. Treatment in this trial also did not induce side effects. The drug does have the possibility to become a blockbuster as it has shown some promise for other autoimmune diseases such as multiple sclerosis, rheumatoid arthritis, autism, even allergies as seen in this Wall-Street Journal article.

With the large stage clinical trials patients with both Crohn’s and colitis may get another treatment to use in the ever growing arsenal list of treatments. I am pretty sure if I was born in the 1930’s and had Crohn’s I probably wouldn’t be alive today. Hopefully the FDA (US regulator of drugs) will allow this drug as long as it is proven safe. I would rather have patients and not the FDA decide if the treatment works. Knowledge these days spreads like wildfire. With the internet, e-mail, texting, and other technologies we can transmit information so rapidly ye the FDA feels it should regulate medicine like it were the 1950s. Experimentation is needed in a world full of uncertainty. I think Crohn suffers would agree we would eat worms if it made us feel better.

Tofacitinib Improves Ulcerative Colitis While FDA Delays

In this most recent WSJ article the drug tofacitbin helped improved symptoms for people who had inflammatory bowel disease. The article is published in the New England Journal of Medicine which can be found here.  The doses ranged from .5 mg to 15 mg and were taken for 2 months with a 194 patient population.  The largest response was seen in patients who took the largest dosage (15 mg). In the group that took 15 mg 78% of patients saw a response (response was also statistically significant) and was much higher than the placebo rate.  The only side effect was an increase in both good and bad cholesterol (LDL and HDL). However, I would imagine this could be controlled with exercise, eating right, and perhaps a statin (Crestor or Lipitor).

The drug is being studied to be used in patients with ulcerative colitis however patients with ulcerative colitis take similar drugs to Crohn’s patients. Pfizer (company that makes tofacitibin) is still waiting for the drug to be approved for rheumatoid arthritis and the FDA was suppose to make a decision by August 21 however pushed that back three months to November as seen here.  What is interesting is that tofacitinib would be the first drug approved for rheumatoid arthritis in over a decade. What is even more interesting is that tofacitinib has one of the largest clinical databases for any rheumatoid arthritis drug ever submitted with over 5,000 patients taking it in 44 different countries yet the FDA still needs more time to analyze the drug.

What is encouraging however is that in May a panel of FDA advisors in an 8-2 decision should be approved (FDA doesn’t have to follow panel advice but usually does).  I wonder what would happen if you had a panel of 10 family members of people who either suffered from both rheumatoid arthritis and ulcerative colitis. I would be willing to bet the rent money that that decision would be 10-0 to approve. The FDA panel has no personal experience with these illnesses nor do they see the daily pain that people suffer as the result of these diseases. While I agree the FDA should be in charge of safety of drugs they should in no way shape or form be in charge of how effective the drugs are. By pushing back the possible approval date patients will suffer and be harmed in the process which hardly anyone ever talks about. Also tofacitnib seems much safer than Remicade, Humira, or other drugs. The FDA acts like a cartel deciding what drugs go on and off the market. As a Crohn’s patient I want as many options as possible. Let me as a Crohn’s patient decide what I ingest into my body. After all I do care more about my body than any bureaucrat! 

Sleep and Crohn’s?

This recent study came out and discussed the affects of sleep on the immune system. The main point of the article is that sleep can affect the immune system like physical stress. Since Crohn’s is does deal with the immune system it would be interesting to see how sleep affects Crohn’s patients or if Crohn’s patients have a history of sleep problems. I know for myself a few months before I was diagnosed with Crohn’s I was taking sleeping pills every so often because I had trouble falling asleep. Also I was taking Nyquil when I got stuffed up. Maybe this contributed to me getting Crohn’s I am not sure. I do know that when get enough sleep I feel a lot better and my pain seems to be a little less. Although, the exact same thing could be said for people who don’t have Crohn’s. An interesting study might be to see how sleep affect TNF levels.

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. 

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. 

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.