Tuesday, December 31, 2013

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.

Sunday, December 22, 2013

Swimming In Cold Water Does Help Crohn's: No Pain

So about a month ago in November I tested the theory that I saw in this article about a man overseas who swam in the English channel to help his Crohn's disease. In order to test this theory a little before 10 P.M. last night I went outside and felt cold to begin with and then went into the cold water (the air temperature reading on the pool was 57 degrees). At first my reaction was aghh!! Too cold!! However gradually as I started to move around I began to feel "warmer". My stomach felt amazing though in the water as I started to swim. I didn't last as long as I expected (15 minutes). I suspect that over time I can build endurance and swim more. My ears felt a little cold afterword but other than that I felt great. I did notice that the cold seemed to "freeze" my symptoms for about 30 minutes or so. I didn't have very much pain to begin with but still felt better. The only issue really is that I live in a state that has very warm weather in general so really the only period of time I can do this is between now and probably February. I am curious to see how I would feel after going into the pool Christmas Day (I might give myself a true present with that).

At any rate this morning I woke up around 4:30 a.m. feeling a tad tired but not too bad (I plan to go back to sleep before work begins). Perhaps the cold water jump started my immune system. I usually tend to go to bed around 11:30 P.M. (so my body is in need of some more sleep). Perhaps this is the immune related response with the cold (not needing as much sleep). 

I will continue to try swimming at night and report back my results. I might put together a spreadsheet showing air temperature, how I felt afterword, and how long it lasted for. If I start feeling really lucky maybe I can stop taking Asacol and Humira :-) (I would consult my GI first of course).

I did swim several times after the initial first time and every time I did swim continued to feel better right after. It seems as if the cold water does just freeze the symptoms. For about 30-40 minutes even after getting out of the water I still didn't feel pain which is quite amazing. The unfortunate thing is I lived in a state that is hot most of the year so I might as well get in these swims while I can!

Weekend Links: Capsule Endoscopy in Crohn's (Japan), Pig-Worm Treatment for Autism?, Stem Cell Trial for Crohn's

This recent study (to be published in Jan 2014) shows that capsule endoscopy can be useful in evaluating small bowel mucosal injuries. However, patients with intestinal strictures should be careful (capsule could get blocked which would lead could lead to an emergency trip to try to remove the capsule. In this related paper it only takes about 10 cases of capsule endoscopy images for a doctor to become proficient in it.

So Coroando Biosciences this year has had an interesting year. First the stock seem to run up after excitement about the trial they were doing with TSO-pigworms for Crohn's (however the data later came out showing there was no benefit). Now we learn that the same company seems some good results for patients with autism (there were only 10 patients in the study). It is believed that autism is autoimmune (this is controversial). If the FDA approves TSO pigworms for autism it could allow more patients to experiment with it for Crohn's (since once a drug is approved by the FDA the FDA can't ban what a drug is used for).

Emory University in Atlanta, Georgia is conducting a trial using mensenchymal stromal stem cells from patients. So the cells are taken from the Crohn's patient and then processed (I have usually seen this done via centrifuge) and then the cells are placed back into the patient. Taking stem cells from a stranger isn't as effective since you don't have their immune system which results in a live-long course of drugs that suppress the immune system. For more information you can call (404)-727-7049. 

Friday, December 20, 2013

Stress and Crohn's: December Update

So recently I have feeling a little odd. My schedule at work is super busy (I literally am busy from 9-5:30 with no lunch break). Not to mentioned I am a little stressed out with an upcoming exam on Saturday. I have been having solid bowel movements but some cramping at night. My bottom feels a little odd (hard to explain). At night I have been putting ice packs on my stomach. I usually feel best in the morning with no pain and seem to have it more as the day wears on. I have been stressing out over a bunch of things. A couple of things could be happening. The Humira could be losing its effect after one month or the stress could causing me to have a mini flare up.

So today (December 20, 2013) I have been feeling better than yesterday. My bowel movement was solid today. The odd pain in my rear is gone. I did feel a little light headed today today. I took off work today for much needed vacation. Maybe my gut knows I am not at work and decide to relax as well. Tonight I injected my Humira and a little leaked. I might feel more pain in a few weeks. I just remember this was happening for a while (many months) before I realized I knew I was doing it incorrectly. I have an exam tomorrow afternoon and will get a goodnight's rest for it. This evening as I get ready for bed I don't really have much pain. I look forward to next week catching up on some sleep.

Saturday, December 14, 2013

Weekend Links: FDA Worries Theoretical Side Effect from Vedolizumab, Fecal Transplant Houston, Women Goes On Macrobiotic For Crohn's, Colon Test Detects 85% of Cases, NOTES Surgery for Gastrointestinal

So the great geniuses at the FDA have called into question the drug Entyvio (vedolizumab) for concerns that it could theoretically could happen. The FDA in their wisdom wrote a 177 report that can be found here. When I have some more time I will write a full blog post on this. What the FDA is worried about is that since vedolizumab operates similar to a drug named Tysabri (natalizumab). One potential side effect is PML which is a fatal brain infection that can be acquired from taking Tysabri. However, the risk of getting PML is estimated to be 1 in 1000. So even though 31 confirmed cases of PML have been reported you have to look at how many people overall are taking it. What is interesting is that now there is a test JC Virus Test to see if there is a presence of the virus to see if it can lead to PML. The JC Virus test is required in order before one takes Tysabri. Even having the JC Virus doesn't mean one will get PML it just means that one has an increased risk of getting it. With costs are benefits. Vedolizumab seems to be most beneficial for patients who have ulcerative colitis as in the clinical trial 47% of patients who took it after six weeks were in remission compared to the placebo of just 25.5% (result was statistically significant). 

The FDA said basically well since this drug vedolizumab is similar to Tysbari we should expect the same thing to happen. However, what is quite interesting is that even the FDA report states that "at this time no en cases [of PML] have be reported in patients taking vedolizumab. In the trial over 1400 patients received vedolizumab and not one patient actually contracted PML. The FDA is as usual over concerned about the potential side effect of a literal 1 in 1000 chance (the trial proves it is probably less considering no one actually got PML) when the condition of Crohn's or ulcerative colitis one could argue is much more dangerous.

Here is a story out of Houston showing how a patient with c difficle got their life back after a fecal transplant. Dr. Herbert Dupont is leading the fecal transplant program in Houston. The procedure only takes 10 minutes and patients feel much better very soon. Dr. Dupont is currently doing a study to see if c difficle can help patients with Crohn's disease and ulcerative colitis. 

So I am always interested in seeing stories about diet and Crohn's disease. I think diet does play some role in Crohn's, however it is important to remember some patients can go decades without symptoms of Crohn's. So Ruth Twort has had Crohn's disease for 30 years (since 1983) she is now 49. She has changed her diet to just eat macrobiotic foods (she eats porridge, brown toast, and roast chicken). She substitutes agave syrup for sugar. She also eats Sushi 2-3 times per week. For Crohn's flare ups she will eat miso soup with soba noodles. She also never drinks whole milk. I think eating well in general is good for health. Being diagnosed with Crohn's has made me more health conscious in what I select as food. I really would like to see a study done of people before and after they try these diets (a colonoscopy at the beginning and one done 6 months to 1 year after the diet has been tried). 

Blood Test 85% Effective for Colon Cancer
So many people don't like having a scope inside of them (really a colonoscopy is a piece of cake the prep is the hardest part). About 50% of people avoid them because they don't want to deal with it which could mean many people have possible colon cancer or other gastro issues. A new blood test can now with 85% accuracy detect cases. I am sure as more people are studied (200 have been studied so far) the test will only become better and cheaper which can spare many people from having a colonoscopy which would free up gastro docs to see IBD patients and save insurance companies bundles of money.

I am always a fan of doing things better and more effective. NOTES (Natural Orifice Surgery) allows surgeons seems to offer advantages over conventional minimal surgery by avoiding incisions and as the name suggests goes through natural orifices in order to perform surgery. Some of the procedures that can be performed by NOTES are bariatric repairs, fistulas, and ulcers. Patients usually go home after 1-2 days with less pain and best of all no incision or scar. Currently, NOTES is relatively new and will take time before it becomes adopted by more surgeons. 

Thursday, November 28, 2013

Weekend Links: Thalidomide Crohn's Remission, Humira More Effective After Surgery, Delay in Crohn's Diagnosis and Greater Risk of Surgery, Leukocyte Apheresis Helps Crohn's in UK

Thalidomide Clinical Remission for Pediatric Crohn's Patients
So it appears according to this study that thalidomide helped improved the condition of Crohn's patients. The study involved 56 children and was conducted over a 4 year period. Basically the trial showed that the true benefit for thalidomide came 2 months after the dosage was initially started (no change after the first month). Overall a little over 63% of the children achieved clinical remission which is quite impressive. What is even more impressive is that clinical remission was achieved for almost 3 and half years (181 weeks). Thalidomide  for Crohn's has been studied for a while with even positive results yet it is curious why more trials haven't been conducted given the good results. Here is a case of a 31 year old executive secretary woman who had severe Crohn's for 15 years (was on 6-MP and drugs like Prednisone) and then took thaldomide for erythema nodosum and her Crohn's went into remission (interesting how experimentation works). She according to the article was in remission for 4 years. Here is another study from 2011 that reached a similar conclusion that thalidomide was useful for pediatric Crohn's. Perhaps thalidomide needs to be used more to see if it can really help more patients with Crohn's.

Humira More Effective than Azathrioprine & Mesalamine After Resection for Crohn's
This study in the November 2013 issue of American Journal of Gastroenterology showed that Humira (Adalimumbab) had a lower endoscopic recurrence (12.4%) than Azathrioprine (65%) or patients taking mesalamine (50%). The quality of life was also highest for patients taking Humira after the surgical resection.

Delay in Crohn's Diagnosis = More Complicated = Greater Risk of Needing Surgery 
So this study studied 905 Crohn's patients and placed the patients into various categories depending upon when patients were diagnosed. What researchers found was that the longer patients waited to get diagnosed was correlated with a surgery required. This may be a situation were correlation and causation are running the same direction given the more damage Crohn's is causing to your intestines the less likely it is they can be healed. I was lucky in that my gastro doctor made the correct diagnosis within 3 weeks. Hopefully we can develop better testing to distinguish between different digestive diseases.

Leukocyte apheresis helps first Crohn's patient in United Kingdom
A 24 year old guy who failed both medical and surgical therapy used leukoctye apheresis treatment which lead to a successful treatment. Basically apheresis is removing blood from the patient taking the blood and separating into different parts (using a centrifuge) and the blood is then retransfused into the patient (stem cells are done in this way often times).

Thursday, November 21, 2013

Weekend Links: Diet Helps Crohn's Woman, Fecal Transplant Helps Crohn's Patient With Fistula, Jog May Keep Crohn's At Bay, Possible Cure For Crohn's?

Diet Helps Woman With Crohn's
So here is a story about a diet that helped a Crohn's patient. Tara Rosas was having issues with Crohn's and when she was told she would need surgery she tried changing her diet and actually is now in remission. She eliminated all grains, potatoes, and certain sugars and began eating spinanch, celery, carrots, apples, and lemons. After 7 months she was symptom free (I would love to see a colonoscopy before and after and was able to stop all types of medications. She has been in remission for 3 years. It can be tricky because sometimes people can go into remission for years and maybe not even me on medication and be fine.

Fecal Transplant Helps Crohn's Patient With Fistula 
Here is a case study that showed how a fecal transplant helped someone with refractory Crohn's disease (patient had a fistula).  The patient was a 32 year old Chinese man who had Crohn's disease. A CT scan in the patient showed an abdominal mass. A fecal transplant was performed (mid-gut) and a week after the fecal transplant the patient no longer had a fever, bloody stool, or abdominal pain, and his mass became smaller. His CDAI score decreased from 537 to 228. After three months his CDAI score dropped to 62 (remission).

Jog A Day May Keep Crohn's At Bay
So this recent study looked at women (194,000) over a long period of time (between 1984-2010). The studies conclusion is that "physical activity was inversely associated with risk of Crohn's disease but not ulcerative colitis". This is interesting because I partly have a theory that my insane workout routine pre-Crohn's may have lowered my immune system and possibly lead to met getting Crohn's disease. What studies like this fail to do is look at what caused what. Exercise in some people may increase or decrease risk of Crohn's (it depends on the person since everyone is different). The next study that should be done should try to answer the why.

Possible Crohn's Cure? Anti-MAP
So I probably have discussed this before on this blog but Dr. Naser at University of Central Florida is doing some interesting work in trying to possibly develop a cure for Crohn's. Naser has been at UCF since 1995 and been studying Crohn's for about 18 years. There will be no doubt that the upcoming clinical trial he has started will see once and for all whether or not MAP causes Crohn's disease (I hope it does because if so it could be a large breakthrough for Crohn's patients). Redhill Biopharma is already conducting Phase III clinical trials. Results probably won't be expected for 2-3 years (although if patients really were cured they would most likely suspend the trial and allow patients who suffer to take the medication).

Tuesday, November 12, 2013

Going Back To Humira Every Other Week!

This year has been an interesting journey. At the very beginning of the year I caught c difficile (my internist doctor doesn't believe so since I didn't have symptoms of fever) which lead me to try Dificid many times and went up to Mayo twice (first to confirm c diff and the second for the fecal transplant). I then was still having issues and my Humira was increased on June 14, 2013 and I discussed in this blog post only to have a solid bowel movement by August 25, 2013 (I can still remember it). At any rate I am feeling pretty good these days with only very very minor pain (probably .25 on a scale of 1-10)

My GI called right before lunch today and told my blood test with great results and we were going to decrease the dosage of Humira from every week to every other week. When I met with him in person (we met for about 10 minutes) I asked him since I was use to the dosage every week would my body build up a tolerance. His response was it shouldn't and I should be okay even if we scaled back. Hopefully this turns out to be correct. The c diff could have caused a minor flare up which made things worse for a while but it honestly didn't feel like a flare up (I was going to the bathroom at night which didn't even happen when I as hospitalized in 2011). At any rate this is great news and that would be truly amazing if I could get off Humira completely (I might need some more of those cold pool swims!)

Sunday, November 3, 2013

Weekend Links: Cold Water Helps Crohn's?, Remicade + Immunomodulator Reduces Surgery/Hospitalization, Diet and IBD-No Link, Sleep and Crohn's Hand & Hand

I am across this interesting article that discusses how a man named Rob Starr. He has had the disease for 24 years and beginning in 2010 started swimming in very cold sea water. What is really interesting is that he woke up at 3 A.M. one morning in pain and then started to swim and was pain free after that. Sometimes with Crohn's you can have pain for periods and then they go away. Starr notes that swimming in warm water doesn't help. Six years ago he stopped all medications.

This study was done with mostly older men and showed that when Remicade (infliximab) was mixed with an immunomodular it lead to fewer hospitalizations and surgeries. The study look at over 20,000 veterans with IBD over an 8 year period.   

This study looked at how long it took patients to receive a diagnosis for Crohn's disease. A 25-month delay in diagnosis resulted in being more likely to require intestinal surgery. The longer wait also resulted in a higher risk of patients having a bowel stenosis. 

This  research shows that the data that "altering diet can change the natural history of IBD are scarce". The data is actually contradictory the author points out. The author of the paper Dr. Jason Hou of Baylor College of Medicine also has this interesting paper were he looked at nearly every study done on diet and Crohn's disease and ulcerative colitis and found "high dietary intakes of total fats, PUFAs, omega 6 fatty acids, and meats were associated with an increased risk of Crohn's and ulcerative colitis. However high fiber and fruit intakes were associated with a decreased risk of Crohn's disease." Growing up I didn't eat too many fruits. However, I wonder if people who have the genes to get Crohn's just prefer to eat other things.

Sleep and Crohn's Go Hand and Hand
In this abstract Dr. Jami Kinnucan of the University of Chicago discussed the connection between sleep quality and the quality of life with people with IBD. However, Dr. Stephen Hanauer correctly pointed out that this is trying to figure out what causes what. Does lack of sleep affect sleep or does having a flare up cause an impact on sleep. I personally believe that more sleep does make you feel better if you have Crohn's from personal experience. In fact my first solid bowel movement in many months was the night after I got 9 hours of sleep (I felt quite amazing that day too). 

Sunday, October 20, 2013

Weekend Mini-Flare Up?

So for some strange reason sometimes on the weekend I can tend to flare up and then things to back to normal. Last night I had a cookie sundae (which was very good) but after a while I had a mixed bowel movement. I had a mixed bowel movement the other day but then the next day it was a solid movement. It was really strange because last week at work I was working more hours than usual but I was very focused and seemed to be "in the zone" (even more so than before I had Crohn's). Sleep seems to have a largest impact on my symptoms. I really have not noticed much pain and I am trying to go light on my foods (I am going to try this week at work to cut out chocolate and see how I feel). My weight is above 160 pounds (highest it has ever been but I don't feel bloated). Last night I went to bed around 3:30 A.M. (I guess I should say this morning). I was wondering about what would happen if I am in the middle of a flare. Would I go on Remicade? Would I need surgery? Is there some other treatment I could try.The other thing I noticed was that my skin did break out a little bit while I felt very minor pain in my stomach. Perhaps this has something to do with inflammation (when I was younger I had acne on and off for years) and my understanding is acne is just inflammation of the skin just like Crohn's is inflammation of the digestive system attacking itself.

As I mentioned in my last post my anal fissure (or whatever I had) seems to be going away. I really feel back to normal in that area. I am curious to find out what it actually was and what caused it. I see my internist this week so I will get his thoughts on it.

Monday, October 14, 2013

Coranado Biosciences: TRUST I Trial Fail for Crohn's...Trust II Data Due in December

So today in a press release Coronado Biosciences which has been developing the treatment of TSO pigworms to treat Crohn's disease. The stock as a result plunged 65% as a result. The trial consisted of 250 patients (125 in the placebo and 125 that received treatment). The treatment group received 7500 ova every 2 weeks for 12 weeks. The most common side effect was abdominal pain which occurred in 11% of the placebo group and treatment group (which really isn't a side effect if the placebo group had the same rate as the treatment group and Crohn's is general has this side effect anyways). 

The clinical endpoint or what they use to see if CDAI dropped 100 points in Crohn's patients (CDAI is used to measure how severe Crohn's disease is). The other clinical endpoint was to see if CDAI dropped by more than 150 points. What the trial did show was an improved response who had a CDAI of 290.

In December 2013 it is expected that TRUST II data from Europe will become available. 212 patients are enrolled in this trial according to Clinical Trials website. This trial actually gives patients three different doses (low, medium, and high doses) instead of just giving patients the treatment or placebo. 

Past studies have shown that TSO is quite remarkable. This study from Gut showed that close to 80% of patients had a response. In this study 86% of Crohn's patients achieved remission. This study from 2004 published showed that 43% of patients with ulcerative colitis saw improvement. This study talks about a 33 year old financial analyst (who had Crohn's since he was a teenager) took the treatment and saw a significant reduction in his symptoms and inflammation markers. 

I wish the FDA would only test drugs for safety and let consumers, doctors, and researchers figure out if the drugs are worth taking. Everyone has a different biology and make up and TSO pigworms may work in some while not working in others. Why should the FDA tell people how to use drugs? (I am okay with them just approving drugs on a safety basis). By not allowing people to experiment and try the TSO pigworms many people will be harmed. Experimentation is needed for a disease that harms so many and ruins the lives of many more. I hope the TRUST II results have positive results. Also Corando Biosicences is also studying the drug for autism, psoriasis, and multiple sclerosis (which if any were a big success would be worth some serious money).  

Sunday, October 13, 2013

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.

Saturday, October 12, 2013

Week 1 of Anal Fissure with Crohns: Healing On Its Own

I mentioned in my previous post about my anal fissure. This morning I had a bowel movement that was a little painful (no blood through and still solid) however I told a hot bath after which relieved the pain (I usually can stand the hot water for about 20 minutes). It was odd because my stomach was perfectly fine however my backside was in pain. It seems that this has gradually improved. I have been taking hot baths which seem to greatly reduce the pain after I get out of the tub along with using a heating pad under my bottom. On Wednesday night I tried to roll on to my backside in bed and just felt some serious pain. My whole bottom felt in an odd way like your throat feels when you have a sore throat. However, if I laid on my stomach I was okay. I also have began to eaten more nuts (fiber) to help. 

I called my GI doctor who said to "keep doing what I am doing" and he is right. My GI also said this could be an isolated incident which it looks like it was. Sometimes patients are eager to say just fix things instead of letting nature take its course. Perhaps an idea would be to continue to hot baths for a while and I plan to see my GI doctor (I am curious for him to examine the area to see if any skin tags are there). 

Wednesday, October 9, 2013

Anal Fissure and Crohn's: Botox, Nitroglycerin, and Surgery

So this past Sunday (Sunday October 7) I was on the toilet and after a solid bowel movement noticed some blood. However the blood wasn't coming from a different source (other opening in the region) which was bizarre. For some odd reason I thought of an anal fissure. I did some research and found it online. From what I read it looks like something that can be taken care of. Some things I noticed were taking hot (sitz) baths and eating more fiber helps. I plan on trying this a while and see if it gets better healing on its own. When I walk I literally feel like I have a pain in my rear (feels more like pressure).  It has been a little hard to sit.I have in the past had times when my rear does feel some pressure but usually it goes away This evening I had a bowel movement with no blood and perhaps the event yesterday was a one time event. I was trying to figure out what may have caused the fissure. The only thing I can think of was little sleep (had to wake up early over the weekend) and performing a hardcore workout on the elliptical on Saturday night (burned over 500 calories and felt amazing). When I was taking dicyclomine I did notice my bowel movements were very solid (a little constipation).

This event is interesting since I did take dicylomine which does relieve cramping however my GI did say to stop it if I felt constipated. Also I did have an issue with defecation syncope while on the toilet not to long ago which could have lead to a minor crack while on the toilet. I wonder if this contributed to my situation now. Tomorrow morning I plan to call my GI just to get his opinion. I have a feeling he may tell me to take some type of fiber supplement.

It appears anal fissures are pretty fixable. According to this Medscape article 80% of fissures are acute (meaning they are just a minor nuisance). From what I have read the first step for anal fissures is hot baths and increasing the diet to high fiber. If that fails people then try ointments or creams. Nitroglycerin ointment has a success rate of 55% (according to this article).  Actually what is interesting is even Botox can be used to fix the issue (which has a cure rate of 79% according to this article). Surgery is highly successful for people with anal fissures and according to this article has a 90% success rate (however carries a 10% risk of incontinence).  I also learned of another interesting procedure for anal fissures called endoscopic anal dilation which has a cure rate of 93% after one month according to this article.

Every day it seems like my bum hurts and my stomach is perfectly fine. It would be nice to get things back to the way they use to be.

Tuesday, September 24, 2013

Defecation Syncope with Crohn's, Dicyolmine Stopped, and Possible Humira Dosage Cutback

So on Monday September 23 I was on the toilet around 10:30 A.M. and noticed a cramp in my stomach and all of the sudden passed out while on the toilet (I didn't fall off or hit anything). However, I remember getting a flush feeling spacing out and then gradually coming back to my senses. I was probably out for a minute or two at most. It was a very odd experience. When I had a bowel movement tonight I was worried I would pass out but I was fine.

It was nice because later in the same day I went to a GI who said it was defecation syncope. He said it can actually happen to patients while coughing or urinating. Although, he said it was pretty rare which worried me a little bit. I did some research and it can happen although isn't life threatening even though I read you can die from it within 2 years due to underlying conditions (the underlying conditions are life threatening themselves).

My GI told me to stop dicylomine yesterday (I believe this might have caused the defecation syncope). Dicylomine just treats the cramping. Also I have been feeling very good (100% in fact) and asked if we could scale back the Humira from every week to every 10 days or every other week. My GI mentioned that he wanted to see me on a Thursday (I usually do my Humira shot on a Friday night) to do a blood test and see how much Humira is in my blood.  Depending on the blood test my Humira might be cut back.

Today I saw my regular doctor to follow up with the defecation synscope and a blood test was done along with an EKG (just to make sure there are no heart issues. My doctor mentioned that since I am on such odd drugs it wouldn't hurt to do such tests. I seem to be more proactive with my health these days because it seems like you get one thing and realize it lead to something else or be something else (initially a resident believed I had celieac disease, while my father after much research thought it was c difficile, while my doctor said he wouldn't be surprised if it wasn't an infection (meaning c difficle). What was interesting is my doctor use to work with a GI who saw plenty of Crohn's patients (300 actually). What this doctor noticed was that after everything was tried sometimes Flagyl would help patients. However, no one knew why this worked. This came from experience and couldn't be explained by any evidence at the time. These days more researchers are studying why this actually works.

Sunday, September 15, 2013

Weekend Links: Smoking, Fecal Transplants for IBD, Remicade Generic, Crohnology, and Lasers for IBD

Smoking and Crohn's 
     This article studied people who smoke and use to smoke and found that patients who smoked required more treatment that non-smokers. Smokers were more likely to have strictures, receive steroids, immunosuppressants, or on anti-TNF drugs (this tells me the smokers had more moderate to severe cases of Crohn's). Last year I did a post showing that showed that smokers were more likely to require surgery than non smokers (80% increase actually). Also in that post I mentioned that at 10 years the need for repeat surgery was only 41% for nonsmokers and 70% for smokers. The policy recommendation would be to obviously stop smoking.

Fecal Transplants Treating Bowel Diseases
Early data from a study out of Canada shows that fecal transplant may help people with inflammatory bowel disease (IBD). Canada actually has the highest rate of Crohn's disease in the world. The study plans to look at 120 people (as I write this 60 patients have been treated so far). Patients are using enemas in this trial. Dr. Paul Moayyedi said that some patients have done extremely well so far and one patient was in remission for 6 months. Patient Anna Fernande has been in remission since last fall (she has ulcerative colitis). Personally I believe fecal transplants will help the people with ulcerative colitis more than Crohn's. Perhaps researchers can study why this is the case.

Remicade Going Generic?
It looks like Remicade might be going generic in Europe at least. Drug companies are given a patent to market and sell a particular drug for a decade. However, after this time period a drug then become a generic and usually the cost is substantially less. The generic and the real drug made are on the molecular level however in practice and be a little different. However, with biologics this is trickier to do since you aren't replicating a pill. Inflectra would be what is known as a biosimilar to Remicade. What is interesting is in a trial of people with rheumatoid arthritis patients actually did better under Inflectra (the biosimilar) than Remicade the more expensive drug! Inflectra also showed that is had similar side effects as Remicade. Estimates show that biosimilars could save patients $23 billion by the year 2020. However, one issue is this would only be approved in Europe and not the United States. Perhaps we should have some reciprocal approval program to where if a drug is approved in one country it can be approved in other countries.

Crohnology: Crohn's Patients Helping Other Crohn's Patients
This is a pretty good article on a website Crohnology (which I am a member of) were people with Crohn's and ulcerative colitis discuss what they prescriptions they are on and how they deal with Crohn's. The website is powerful in terms of you can track your health everyday and get a text message that asks how you are doing. Crohnology was founded in 2011 and already has over 4,200 people. Patients helping others is wonderful and there may be important knowledge in Crohnology that researchers could use to better understand this horrible disease.

Laser Peers Through Intestinal Walls
A new laser could be used to help determine if a patients needs a colonoscopy or biopsy. The technology can give doctors a more focused approach to where the biopsy needs to take place instead of guessing.

Saturday, August 31, 2013

Weekend Links: ChemoCentryx Drug Crohn Failure, Chronic Bowel Disease Increases in UAE, Vedolizumab Remission

ChemoCentryx SHIELD-1 for Verniron Fails
     The drug company ChemoCentryx that their drug verciron (chemokine receptor CCR9) really didn't help patients with Crohn's disease. The clinical endpoint is was whether or not patients has a decrease of at least 100 points in their CDAI score after 4 months. 608 patients were enrolled in the study (which is not only timely but very costly). Vercirnon was suppose to launch in 2016. Vercirnon was an oral drug and had lower costs associated with it since it wasn't a biologic which are much more expensive according to this article.

Bowel Disease Increasing In UAE
     It appears that doctors in the UAE are seeing a rise in the amount of inflammatory bowel disease. Dr. Nathwani has said he has seen a 10%-15% increase since 2007. Dr. Nathwani sees about 3 or 4 new patients every week with IBD every week. Dr. Kataa says that white people who are young are a higher risk of getting it. Perhaps one theory which I might believe to be true is the clean hypothesis which basically states that autoimmune diseases are on the rise because we might be in fact too clean which explains why developed countries have seen an increase in autoimmune diseases while undeveloped countries with more parasites have fewer cases of autoimmune disease. The pigworm drug trials will shed more light onto this.

Vedolizumab Helps Remission for Ulcerative Colitis
According to this study from the New England Journal of Medicine. The medicine actually had better results for patients with ulceartive colitis than Crohn's disease. In patients with ulcerative colitis 42% were in clinical remission after one year according to this article. The remission rate for Crohn's patients was only 15%. This is a very low remission rate for Crohn's. What would be interesting to see if the 15% of Crohn's patients had anything in common.

Sunday, August 25, 2013

First Solid Bowel Movement in Over 7 Months! Humira is Working!

So today something pretty wonderful happened. Not only did I get 10 hours of sleep (I felt quite amazing today as a result), but I had my first solid bowel movement around 4 P.M. (I only had to go once today as well)! I was so happy since I haven’t had one since January 6 of this year! Although, it is good, I hope this continues into the near distant future. I have notice for the past week my bowel movements looked a little more solid. I have noticed I have gained weight and now weight about 152 lbs which is pretty good (I was about 142 a few months ago).

One theory might be that the c difficile I had previously is now out of my system my colon has actually been healing for the past week months. Also my dosage of Humira has increased (it actually more than double since for a few weeks I was injecting it incorrectly as some of the liquid was leaking because I wasn’t holding the injection in long enough). Hopefully this is the start of more things to come!!

Friday, August 23, 2013

Diclyomine Helping Crohn's! Near 100%

So about a week or so my GI prescribed diclyomine which seems to have helped. I noticed less cramping and pain after I started taking it. The only thing I have noticed is that is my nose seems to have dried up and I have no moisture. My bowel movements have decreased as well. Part of the reason could be increasing the Humira and my colon now having some rest after my c difficle episode. Right now I am suppose to be taking 2 diclyomine pills a day but about two days ago I wanted to see if I could get by with one. When I first started taking it I noticed that I was a tad dizzy but this went away. My GI told me to immediately stop the drug if I get constipated. The only other side effect is blurred vision which I haven't notice yet

On another note I took a road trip to Dallas last weekend and felt quite amazing. I really do think stress has some impact on Crohn's health. I feel pretty good this week but when I was able to sleep for 9 to 10 hours, relax, and not have anything to worry about I felt good.

I am pretty satisfied with were I am in my condition. The Mayo Clinic called me to see how I was doing (I e-mailed them when I wasn't sure about what treatment course to take) and the doctor I saw suggested 6-MP however one draw back to this is monthly blood testing. He agreed that me taking diclyomine was a good idea. I somewhat agree with my GI's approach since it is more conservative. I would honestly say right now I am probably at 90% (10% due to diarrhea). Perhaps my colon is finally healing and my body is getting back to normal. It is quite amazing earlier this year I felt on the verge of death and had to get 3 liters of fluids pumped into me and now I am quite almost back to normal.

Wednesday, August 14, 2013

Mid-Week Links Part II: Probotics Don't Help Crohn's, Fecal Transplant Cures 97% of C Diff, Pill Camera Approved For Crohn's

Probiotics Doesn't Help Flares For Crohn's
     This study showed that taking probiotics doesn't help Crohn's patients. 47% of the people who took probiotics had relapsed while 53% of the patients in the placebo group relapsed. Really there was no statistical difference between the two groups.

 Fecal Transplant at Mayo: 97% Effective in C Difficile
    This study out of the Arizona Mayo Clinic (they have branches all over the United States) showed that 97% of patients who received a fecal transplant got rid of their c difficile. A majority of patients noticed an improvement in 3 days. The study was only done on 31 patients however this is another data point showing fecal transplants are effective! Hopefully, we can see in the future if fecal transplants can help things like ulcerative colitis, Crohn's, Parkinson's disease, multiple sclerosis, autism, obesity, and maybe even depression.

Pill Camera Approved For Crohn's
     The FDA cleared the PillCamera SB 3 for Crohn's disease and anemia. I believe the SB stands for small bowel. What is interesting is that 75% of Crohn's patients have lesions in their small bowel. What is even more interesting is that after 3 months of using the camera 62% of patients changed treatment and 40% of patients changed medication. Basically you just take the pill camera with a glass of water and it takes pictures of your small bowel and sends them to your doctor (you wear a small belt and recorder). More than 2 million people have already taken the PillCamera which is interesting. The risks are pretty minor. The risk of retention is less than 3% for Crohn's patients.

Mid-Week Links: Heat and Crohn's Flares, $1.5 Million Crohn's Research, MicroBiome in Crohn's, and Implantable Device For Crohn's

Heat Waves and Crohn's Flares 
     This article from the August issue of The American Journal of Gastroenterology shows that a heat wave increased IBD flares by about 5%. This is interesting because I live in both a hot and humid state. What would be interesting is it there was a worldwide study looking at patients from various countries all over the world and looking to see if warmer temperatures in general caused flares. I know someone who is dating a guy who has Crohn's for a long period of time and his metric is every 4th of July he knows he will feel bad. Maybe there is some truth to this study.

Kenneth Rainin Foundation Awards $1.5 million For IBD Research
    The Kenneth Rainin Foundation which is a non-profit created by Kenneth Ranin who was an entrepreneur founded an instrument company and created a foundation to support the arts, sciences, and health research. The foundation actually established an IBD center at UCSF. Ranin has a daughter (Jennifer) that was diagnosed with ulcerative colitis (she also has a Ph.D). The $1.5 million will be used to invest in research that can help understand causes and cures for inflammatory bowel disease (IBD).

Distinct Microbiome in Crohn's Intestinal Mucosa
      Researchers examined Crohn's patients who were undergoing surgery for either Crohn's or for reasons other than inflammatory bowel disease. What is interesting is that patients with diseased Crohn's tissues had more than several hundreds times the amount of bacteria compared to patients with normal tissue. What this really would say is that there are different subtypes of Crohn's disease. Hopefully this research will result in more targeted therapies in the future.

Implantable Biologic For Crohn's Disease?
     A California company called SetPoint Medical has developed a very small device that can be implanted and somehow mediate the immune system to reduce inflammation for people with both rheumatoid arthritis and Crohn's disease. Below is a picture


Saturday, August 10, 2013

Reaching a Crohn's Plateau: Humira Every Week Still Having Diarrhea

So today (August 1, 2013) I went to see my gastroenterologist who was following up increasing my dosage of Humira. My health has been decent however not the same I was when I originally started taking Humira. I am still having diarrhea about 4-5 times per day. My pain level is decent. Most of the day I go without pain.

My GI said the goals for managing Crohn’s are making sure patients are eating well, not tired, no fever, and decent energy levels. My parents were not aware of this and they were thinking I would go without diarrhea. I mean it is sad in a way for now I will continue to have diarrhea. However, I know that as medicines progress could really improve not only my quality of life but the over 1.4 million people with inflammatory bowel disease (IBD). One good thing is that today if you have Crohn’s or ulcerative colitis you have more options. If you had Crohn’s or ulcerative colitis in the 1980’s or even early 1990’s you really only had a the option of Asacol or Prednisone. Now there are biologics, 6-MP, methotrexate, Asacol, Prednisone, and surgery. The surgery that can be done now is much minimal with surgeons taking out less of the colon and intestines and less scaring which is positive.

My doctor told me in the next year or so interlukin’s could be the next big thing for IBD. I believe STELARA is one of these since it targets interleukin- 12 and interlukin-13 which targets inflammation for Crohn’s. I covered STELARA here and the results from a trial.

The plan my GI laid out was to do a C-reactive protein test and to consider giving me anti-diarrhea/anti spasm medicines. Recently, I have been having IBS like symptoms. The idea is that this should do some good. I e-mailed the doctor I saw at Mayo and to get his thoughts and he suggested to a c-reactive protein test, in addition to a CBC (complete blood count), and c difficile test (since I did have c diff for so long). However, his recommendation would be to include 6-MP or methotrexate with the Humira to give it a boost. My GI today said that white males who are young have an increased risk of developing lymphoma (however the increased risk is on a percentage basis). I did some research and the risk was about .1% which is about 1 in 1000 (however it is still there).

I have been thinking about what I eat and last Sunday I ate a brownie sundae with ice cream and some Mexican food for dinner and really felt it. I think food has a role, however I think some people might overstate its impact. With this said my internist recommended a nutritionist who I have thought about seeing. The most I could lose is actually eating a well rounded diet. It would be nice if I could figure out if I have trigger foods. In general I think chocolate might make me worse and anything greasy. However, I still have pain if I have chicken noodle soup so. 

Prescribed 33 Antibiotics Over 10 Year Period Cause of Crohn's?

So I thought I would publish the list of prescriptions I have been prescribed over the past 10 years. Walgreens actually provided this information to me. An interesting study would be to examine the prescriptions people with ulcerative colitis or Crohn's. Since I was prescribed antibiotics 33 times over the course of 10 years I wonder if there is any connection between antibiotics and contracting Crohn's. Also since I was 16 years old I worked out pretty hard. At the beginning I was doing much. However, once I went to college (between 2005-2009) I increased it and remember on some Saturday nights at the gym burning over 700 calories which probably had an effect on my immune system.

December 14, 2011-Asacol HD 800 MG
November 30, 2011-Prednisone 10 MG
November 8, 2011-Hyoscyamine .125 MG
*Was hospitalized day before Thanksgiving 2011
November 23, 2011-Diphenoxylate/Atropine
November 23, 2011-Metronidazole 500 MG
November 23, 2011-Ciprofloxacin 500 MG
October 24, 2011-Levofloxacin 500 MG
October 14, 2011-Prednisone 4 MG Pak
October 7, 2011-Nabumetone 500 MG (foot had some pain in it)
October 4, 2011-Clarithromycin 500 MG
October 3, 2011-Amox-Clav 875 MG
*Around this time developed bronchitis and around same time began to have diarrhea, had a lot of pain in abdomen (would wear ice packs on stomach to help) and lost 25 lbs
May 24, 2011 (diagnosed with IBS) Hyoscyamine .125 MG

Zylet (for eye issue I had)
August 10, 2010-Amox-Clav 875 MG

March 19, 2009-Cephalexin 500 MG
February 17, 2009-Cephalexin 500 MG
January 11, 2009-Cephalexin 500 MG
January 2, 2009-Amoxicillin 500 MG

November 11, 2008-Azithromycin 250 MG
October 2, 2008-Cephalexin 500 MG
September 18, 2008-Prednisone 20 MG
July 18, 2008-Cephalexin 500 MG
May 21, 2008-Cephalexin 500 MG
March 8, 2008-Cephalexin 500 MG

December 21, 2008-Cephalexin 500 MG
November 11, 2007-Doxycycline 100 MG
October 5, 2007 Doxycycline 100 MG
July 26, 2007-Cefadroxil
July 11, 2006-Amoxicillin 500 MG

December 18, 2006-Amoxicillin 500MG
September 25, 2006-Cefprozil 500 MG
September 25, 2006-Prednisone 20 MG
April 19, 2006-Cefprozil 500 MG
April 19, 2006- Prednisone 20 MG
April 13, 2006-Amnesteem 40 MG

December 19, 2005-Claravis 40 MG
November 23, 2005-Claravis 40 MG
August 17, 2005-Methylprednisolone 4MG Dospak
August 17, 2005- Amoxicillin 500 MG
June 22, 2005-Zithromax 250 MG
January 25, 2005-Biaxin XL 500 MG

September 24, 2004-Advair Diskus
September 4, 2004-Zithromax 250 MG
August 07, 2004-Prevacid 30 MG

September 10, 2003-Biaxin XL 500MG

November 18, 2002-Adoxa 100MG
November 13, 2002-Biaxin XL 500 MG
October 08, 2002- Ampicillin 500 MG
September 26, 2002-Cefzil 250 MG
September 4, 2002-Biaxin XL 500 MG
February 11, 2002-Biaxin XL 500 MG
May 24, 2002-Biaxin XL 500 MG

Tuesday, August 6, 2013

Dicyclomine and Crohn's: Now Taking

So my GI called me last night around 7 P.M. to tell me the results of my blood test. Primarily he was looking at my C reactive protein (CRP) which measures inflammation in the blood. My CRP was only .8 which is pretty low (which is a good thing). My GI prescribed me dicyclomine which is to actually help people with IBS (I actually had IBS right before Crohn’s). However, since my colon and stomach have been in a spasm mode it makes sense to prescribe this. I took the medicine last night and the on the bottle of the drug it says not to use heavy machinery after taking the drug. The drug was only 64 cents which is quite a deal. I was a little dizzy last night (which is a usual side effect). Today I felt a little light headed however felt virtually no pain. As I write this as of 7 P.M. I have only gone to the bathroom twice today which is better than the 4-5 times per day I have been going which is pretty good. The past few days I have had to go after lunch. Even after I ate I really didn’t feel much pain afterward. The only side effect is I did feel a little lightheaded today at work however I remember when I first took Asacol I was sweating for at least a week at night.

The plan my GI laid out was to call him in about a week to see how I was doing. I really do appreciate a doctor that calls me personally and gives me lab results instead of having a nurse do it. Hopefully this drug will do the trick. I have gradually since May (after the fecal transplant) been getting back to normal. The goal is to stop the diarrhea and feel well. 

Tuesday, July 30, 2013

Low Dose Naltrexone for Crohn's: The No-Brainer Case For The FDA

           (This picture is of a colonscopy of a before and after of a Crohn's patient who took LDN)

So in a prior post I discussed low dose naltrexone (LDN). LDN was first introduced in 1984 for people with alcohol dependence. The drug has been shown to reduce the relapse rates. What inspired me to write this post was I saw this recent story that talked about how drug company TNI BioTech met with the FDA and Phase III trials may start as early as first quarter in 2014.

The evidence for low dose naltrexone is pretty convincing in terms of being both effective and safer than the current alternativies of Humira, Remicade, and other drugs. This land mark study from Dr. Jill Smith at Penn State University showed that 67% of people went into remission. 89% of patients showed a clinical response which is similar to the rates of Humira and Remicade (however the only real side effects with LDN is vivid dreams and fatigue). In 2011, this study was done by Smith and her colleagues which found that 78% of patients showed an endoscopic response. 88% of patients who took the LDN showed a 70 point decline in their CDAI score (which is a significant decrease). The only side effect was fatigue.

A recent study from April 2013 in children showed that low dose naltrexone was safe and showed reduced activity for Crohn’s patients. However, only 25% of children (between 8-17 years of age) went into remission, however 67% showed improvement. Here is a case study of a 14 year old girl who had Crohn's and pain for 3 years. After a month of taking 4.5 mg of low dose naltrexone she improved. An EGD (esophagogastroduodenoscopy) showed complete muscoal healing and normal biopsies which is quite impressive.

LDN has been shown to be useful in other treatments like multiple sclerosis, prolonging the live of pancreatic cancer patients, and may even help people with HIV and AIDS. There is no question some more studies have to be done on what LDN can exactly help.

Why on earth is this drug still not approved for Crohn's? I would suggest the FDA talk to patients with Crohn's and see how they currently feel given the current state of options in the Crohn's world. Low dose naltrexone seems to show help patients with minimal side effects compared to Humira, Remicade, Enbrel, 6-MP and any other drugs you want to compare it to. The initial study for LDN on Crohn's was done in 2007. So why is it taking 7 years to now just get around to a Phase III trial? 

Mid-Week Links: Crohn's and Sleep, Pellino3, John Hopkins Starts Fecal Transplant Program

Crohn's and Sleep
     In a new study published from Dr. Ananthakrishnan shows that poor sleep may be linked to a flare up in Crohn's. The study was collected by CCFA Partners (which I participate in) which is a study that sends out a periodic survey to Crohn's or ulcerative colitis patients. 50% of Crohn's patients even in remission reported sleep disturbances. I have some personal experience with this as on a Friday night I slept for 10 hours and woke up on Saturday feeling pretty great and almost felt I went into mini-remission.

Pellino3 Found For Crohn's
Researchers at Maynooth (Dr. Paul Moynagh) found Pellino3 could help patients with Crohn's disease and possibly protect people from getting it. The research team found that Crohn's patients have a lower level of Pellino3. The team is now trying to develop a drug that will target this in order to help Crohn's patients.

John Hopkins Launches Fecal Transplant 
     It looks like another medical center is getting into the fecal transplant game. The more places that offer fecal transplant the less patients will have to travel, wait, and worry about whether or not they can get their c difficile cured.