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.

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

Capsule Endoscopy in Crohn's Patients (Japan)

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.

Pig-Worm Treatment for Autism?

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).

Stem Cells Trial at Emory University for Crohn's

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. 

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.

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

FDA Worries About Theoretical Risk for Vedolizumab

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.

Fecal Transplant Now Done In Houston

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. 

Women Goes On Macobiotic Diet for Crohn's: No Pain 

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.

NOTES (Natural Orifice Surgery) Being Used For Gastroenterologists: No Incision/Scar

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.