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.
Sunday, October 20, 2013
Monday, October 14, 2013
Coranado Biosciences: TRUST I Trial Fail for Crohn's...Trust II Data Due in December
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.
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.
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.
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