Friday, December 14, 2012

Urinary Problems Subside and 1 Year Anniversary



As they say what a difference a day makes. So last night I felt I was going to pee myself to death and went to bed a little after 3 A.M. I watched TV to try to fall asleep and it worked. Today I got 10 hours of sleep which felt wonderful. I am 90% sure fluconazole was responsible for it. I stopped the other medications my dentist gave me and started them back today. I feel 110% better today. I have a small feeling that I have to urinate but I think that is the last of the fluconazole that is getting out of my system. Getting some sleep and not feeling the urge to have to go to the bathroom is a wonderful feeling.
On a different note today marks the 1 year anniversary I was diagnosed with Crohns. I am amazed how much I have learned in the past year and will continue to be a life-long student of Crohns.  My self-interest and wanting a record of my progress with Crohns lead me to create this blog. Hopefully, I can educate others with my experiences, studies I find, and other information related to Crohns. If you had told me last year I would have had no pain I would have said you were out of your mind. I worry and wonder how long Humira will last. I have gone 6 months into remission which is great. 

Thursday, December 13, 2012

Urinary Issues With Crohns: Cant Stop Peeing


So I can’t believe this but I felt really good up until last night (my front side seems to have Crohns, and backside says no problems back here). My issue is not even Crohns related well at least I don’t think so. For the past few nights I have been noticing that I sometimes wait a little while to go to the bathroom. I am usually on my laptop after dinner time and do drink water which I read here is not good. Urine would build up a little in my bladder and I would wait to go. I really didn’t pay attention to it. Last night however I had to go to the bathroom all night long basically which was very exhausting and I didn’t get to bed until around 2 a.m. which make it hard to get up my usual time of 7:37 A.M. My brain would think I have to go to the bathroom but then when I pulled down my pants only a little urine would come out.  I do feel better after I go I feel back to normal. As I write this I notice it tends to be a little worse at night. I always drink water constantly throughout the day especially after I work out.

As my dad would say the only thing that has really changed is that I started a drug called fluconazole which is normally used for yeast infections. I mentioned some other stuff I was taking but today when I called my dentist to ask him if this was a side effect he said he never heard of it. I made an appointment to see my internist for Monday.  I will wait until maybe Saturday to see if this issue goes away but if not I have my doctor’s cell phone number handy and may phone him to get some answers.

Crohns patients can get urinary issues such as cystitis, fistulas, and urinary tract infections. In this study called “Diagnosis and treatment of urinary tract complications in Crohns disease: an experience over 15 years” carried out over 15 years 16% of patients had simple cystitis. 7% were required to be hospitalized. Humira can cause urinary tract infections which occur in 8% of patients.I will get more data from not only by body but doctors in the next coming days. Maybe I will end up at a urologist’s office. I am curious what is causing this and whether or not it is Crohns related. Oh what an interesting life I have with my Crohns. 

Wednesday, December 12, 2012

Humira Working After 6 Months! (An Update)


So I have passed the 6 month mark with Humira! Yay! I feel as good now as when I started the medication and have had minor side effects (minor twitches in hand and feet which feels like arthritis however I also do work out close to an hour each day). To be honest I never thought this drug would be so helpful. I hope I can continue this pattern for another decade. My diet as been better since I was diasgnosed with Crohns. Now eating more salads then before I had Crohns but in general eating whatever I want. I think I concisouly eat fewer fatty and greasy things. The only thing that seems to give me trouble is heavy Mexican food and large amounts of chocolate (although I believe this might have upset my stomach even before Crohns). My weight is doing pretty well I was at 156 (high was around 162) for a while then bumped down now to 150 (with my birthday suit on). Bowel movements are less than 1 per day and have reached .5 (was close to 2 before starting Humira).  I am doing it on purpose though since I am driving to Dallas this weekend and plan to engage in some food excellence with In-n-Out (never had), Braums (have had), and Krispy Kreme (use to work there in high school). Hopefully I can be able to work out to burn off those extra calories.

The only real development has been some dental issues. My dentist said I had plaque on my teeth which he scrapped off and showed me. This lead to a visit to a periodontist (gum dentist) who did a deep clean on my gums and teeth (they felt really good and have never looked better!). However he is still worried that my gums may have issues down the road. So he sent me to a oral pathologist who works at a dental school in Houston and I went to visit him last Friday. I also participated in a short clinical trial for oral cancer (1 of 100 patients). The oral pathologist said I had a yeast infection in my mouth (I was puzzled by this) and he gave me some creams, wash, and a pill to take. He put me on fluconazonle to take for 2 weeks for the yeast infection, dexamethasone .5mg/5mL elixir, along with clotirmazole and detamethasone dipropionate cream to put on four times a day. The logistics is a pain because I can’t eat or drink 40 minutes after the elixir and the cream I have to put on all day which makes my lips on the sides a little weird. Hopefully this will be a temporary thing. I know they are doing some work with stem cells in the dental area. Maybe in the future they can just take part of the tissue regrow it and then implant it back.

I always wonder when my next flare up will be. It seems odd that I have had no pain for 6 months. I remember sometimes late at night I would walk downstairs and look out at the moon and wonder if I would ever go a day without pain (in May). Luckily that day is here with Humira. I hope this keeps up though! 

Friday, November 16, 2012

Xelijanz (Tofacitinib) for Crohn's?




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

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

Wednesday, November 7, 2012

Humira 5 Months Still Working!


It has been a while since I have blogged about my progress with Crohn’s. I started Humira June 6tth, 2012 and 5 months later feeling pretty darn good. Pretty much been eating whatever still taking Asacol three time per day, Humira, and my doctor recently noticed I was vitamin D deficient (even after taking a prescription for a supplement) and upped the dosage. I had a scare Monday when I had what I would call a one day flare where after I worked out around 5 pm I really had to go to the bathroom. My bowel movement continued for a while and then stopped and I felt much better after it. The only other real development was my top gum line seem inflamed from what my periodontist says is a systemic issue and sent a sample of my gum tissue to a pathologist who will look to see what it is. My gums have been inflamed (even before Crohn’s). However it is odd that my upper gums are inflamed however my lower gums are perfectly healthy.  Today the periodontist did a deep cleaning which actually made my teeth look really nice! He also trimmed my gums which makes me have less of a gummy smile. I have had this done before and it does look very nice once done.

I honestly have still not had any pain on Humira. Being the planner that I am still looking at alternatives once Humira stops working. I guess the first step is to go to 1 injection per week (instead of one every other week), then if that doesn’t work go to Cizmia, then if that doesn’t work Remicade, then if that doesn’t work then possibly low dose naltrexone if my GI approves it. Last resort should always be surgery. 

Thursday, November 1, 2012

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


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

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

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

Wednesday, October 24, 2012

Crohn's and Dental Health


Today, I went to a periodontist (gum dentist) who said my gums were inflamed and it wasn't due to gingivitis. In the back of my mind I knew Crohn’s might have something to do with it as it can cause gums to be inflamed along with intestines.  This special dentist said that I needed to get a deep cleaning of my gums and they would have to do a biopsy of the gum to see what the cause was. It is odd though because my bottom gums are healthy pink just my top gums are causing trouble. I was a little nervous when the dentist said I might have to go on a steroid. This seems interesting because from what I understand drugs like medicine can cause bones to be weaker. Also I am weighing around 156 (with clothes off) these days and really don’t want to add any more weight when I use to be 140-150 lbs.

I did some research and found a forum were people discussing this similar issue.  In doing more research I found that Crohn’s patients perceive their oral health to be worse than people who don’t have Crohn’s.
This study from 1989 showed that Crohn’s patients have a higher risk and need more preventive care. Although these studies link certain things I would be more curious to find out why gums can become inflamed. My own theory is that autoimmune diseases have to deal with the good bacteria attacking the body which is what causes the inflammation which could be happening in the mouth. Although, the mouth and stomach are far apart I am reminded that the definition of Crohn’s is pain from anus to mouth which includes the gums. 

Sunday, October 21, 2012

Michael Seres Crohn’s Transplant for Bowel



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

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

Wednesday, October 17, 2012

STELARA (Ustekinumab) Promising Results for Crohn's


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

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

Monday, October 8, 2012

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



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

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

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

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

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

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

Friday, October 5, 2012

Olmstead County, Minnesota 1970-2004 Crohn’s Study


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

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

Tuesday, October 2, 2012

Amy Brenneman Ulcerative Colitis and CCFA PSA




Actress Amy Brenneman who now stars in Private Practice and Judging Amy (she isn't bad on the eyes either) is doing a PSA for the Crohn’s and Colitis Foundation. Amy had her colon removed in 2010. When her colon was taken out she had an ileostomy bag in for three months but then had it taken out in a second operation that reconnected the insides. She took about six weeks to recover. Amy was in the emergency room three times in two weeks. She admits her body fell apart. She recently talked about on October 1, 2012 on the show “The View”.  Amy suffered from ulcerative colitis and was diagnosed during her second pregnancy. She took Humira, 6-MP, Colazal, and other drugs. 

Celebrities brining light to inflammatory bowel disease is a good thing. If more stars talk about the diease the more knowledge average people will get which will be good. Raising awareness is always great. Even individuals can spread the word about it. In fact tell complete strangers.

Monday, October 1, 2012

Crohn’s and Depression


I saw this recent story of a young man named Michael Isreal who was only 20 years old who suffered from Crohn’s and also suffered from prescription drug abuse. He committed suicide in May 2011. He was an architecture major at University of Buffalo. He suffered Crohn’s since he was 12 years old.
Once Michael turned 18 his prescriptions started to change. He took pill after pill and they never fixed his Crohn’s. Michael was taking 21 pills per day. Among these drugs were hydrocodone which can become addicted I am curious if he ever took Humira or Remicade which has actually helped people. He told his father about his addiction and enrolled in a detox program (however the detox program was out of beds). Right after this is when Michael Isreal took his life at only 20 years old.

In light of Michael’s death the family is pushing for the Internet System for Tracking Over Prescribing Act (I-STOP)  which would set up databases to give doctors information on prescription drugs that patients take. This would just create an underground market for drugs like hydrocodone and other pain medications which would make the problem worse. If anything we should be allowing more people to use these type of drugs in order to treat the addiction people have. If people really want to take their own life they will. If you make it harder to use prescription drugs people will commit suicide in other ways.

I did some research on any links between Crohn’s and depression or other mental illnesses. In this study found that Crohn’s patients had a greater chance of having psychiatric disorder and more had depression then the controls. Personally when I was younger I use to see a psychotherapist who helped me through some self esteem issues however that was when I was a young adolescent. The only other time I really filled down was right after I got Crohn’s. At first I had no idea what I had and when I was in the hospital felt good and then when I came out came to the realization of what I had and got down knowing I had a life long illnesses. A few of the first nights I cried and was kind of blue. Over time I came to realize I have to live life to the fullest and not let Crohn’s get in the way. After Humira I felt like I never had Crohn’s.

In this study it was found that lifetime prevalence for Crohn’s patients is 29% which is higher than ulcerative colitis (21%) or cystic fibrosis. It should be pointed out that this study was done in 1989 which was before Humira, Remicade, and other biologics were introduced. In an odd way if you get Crohn’s now is the time to get it given all the technological advances that have been made.  This doesn't even include the future things that will be discovered or created

I wonder if any genes are related to Crohn’s and depression. This would be an interesting study for researchers to undertake. Also who knows what advances they might make in treating depression. I have a feeling studying the genome, understanding of inflammatory bowel diseases, and understanding the immune system better will give patients a better shot of turning their frown upside down. 

Friday, September 28, 2012

Breaking News: Humira Approved for Ulcerative Colitis!


Today, it was announced that Humira can be used for people with ulcerative colitis (inflammatory bowel disease). Although, I do not suffer from colitis but from Crohn’s I am happy now more patients will have access to a drug that has really helped me (no pain since June!). Perhaps the post I did back in August maybe persuaded the FDA! The panel decision of 15-2 made it pretty clear that the drug should be approved. As I said in that post the FDA really has no business telling patients with chronic diseases what drugs they should or should not use. Often these patients have more and better knowledge than bureaucrats.
 Humira is an $8 billlion drug that is already used for things like Crohn’s, psoriatic arthritis, anklosing spondylitis, plaque psoriasis, and juvenile idiopathic arthritis. I hope the drug is approved for more uses (I have a feeling Humira could help other autoimmune diseases not sure which ones though). Humira is pretty simple to use. You can go onto the forums and other blogs that describe how scary it is but it is a piece of cake (especially if you have gone through a horrible disease like Crohn’s or ulcerative colitis). The injection stings a little bit and really just feels like you banged your skin against something hard. I put band aids over where I inject it to be safe and ripping off the band-aid hurts more than the Humira injection! Today makes a day we have improved the world just a little bit more.

Thursday, September 27, 2012

Antibiotics, Kids, and Crohn's


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

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

Tuesday, September 25, 2012

Bone Marrow Helping Crohn’s Patients


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

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

Monday, September 24, 2012

Jennifer Jaff and Life Expectancy with Crohn’s



I saw this recent article  about Jennifer Jaff who had Crohn’s since she was 19 and recently passed away at the age of 55. This would say Jennifer had Crohn’s for around 36 years.  In just a 12 year time period Jennifer had 8 surgeries and gained 120 pounds on steroids. In addition to all this at one point in time her kidneys began to shut down. What is really scary is I read this recent New York Times article that talks about how kidneys and other organs are being completely discarded.  I would rather compensate people for their kidneys in order to get more and better kidneys however that is a whole different issue.

Jennifer was a lawyer (trial lawyer in the 1990’s) who earned her law degree at Georgetown. In my experience Crohn’s patients typically seem to be well educated but I would need more data to prove that. Jennifer fought for patients rights and didn’t want insurance companies to discriminate against people with chronic conditions. I disagree with this however since I believe insurance companies should charge prices that reflect their risk. People with more health care problems will cost more than people with fewer health problems no question. On a side note I find most Crohn’s patients to be liberal although I am a libertarian (even before I had Crohn’s) because I believe the government should not tell me what prescription drugs I can or can’t take. Just think how much better off if marijuana could be studied for Crohn's patients. I am all for taking something if it will improve my health. We live in a time where we have more medical knowledge than ever yet the FDA still finds ways to make the process of creating a drug not only burdensome but in some ways make drugs that are too safe. A few major problems with healthcare are consumers are not able to go across states to purchase healthcare, the FDA decides what drugs can or can’t be used, and the American Medial Association (AMA) determines who or can’t practice medicine. If people were allowed to buy insurance across state lines, if the FDA only checked the safety of the drug and not the effectiveness of a drug, and if the AMA was abolished we would have more doctors which would all decrease the cost of medical care.

I was curious about life expectancies and Crohn’s. According to this meta-analysis (combined studies) life expectancy for men with Crohn’s was 77.3 for men and 79.0 years for women. However, if patients were diagnosed before 20 then the life expectancy was reduced to 64. What is really interesting is that the life expectancy of regular people is 71 for males and 77 for females. We shouldn't jump up and down and say wow Crohn’s makes us life longer (or should we?)  I was diagnosed when I was 25.33 years old.  I personally believe Crohn’s may lead to lower life expectancy considering your body is in a state of inflammation but with new technologies like pig worms, Naltrexone, and SSI as possible future treatments for Crohn’s the future does look a little brighter. Perhaps once genome technology becomes cheaper we could see if certain genes led patients to more surgeries, flare-ups, or complications.

Thursday, September 20, 2012

Weight Loss on Crohn's and Family Health


I haven’t blogged in a while been busy with work and studying for an exam in my industry. I am still doing well on the Humira. I actually have lost a couple of pounds (I did voluntarily because I felt I was getting big). These days I weigh around 156 lbs (no clothes).  I blogged on August 16, 2012 of my weight gain here and forget I was 162 a little over a month ago. My work clothes and regular clothes seem to fit better and I wear a size 34 waist even though I have been 32 nearly my whole life (when I came back from the hospital last November my mother had to purchase new pants because I was down to 127 pounds.  For the past couple year before Crohn’s I was 145-155 lbs and never really got out of this range.

I noticed though that my bowel movements went from over 1 to .6 movements per day. I wonder if eating less has anything to do with it. In general I have been avoiding dessert at night and eating salads and healthy things for lunch. Usually my family goes out to eat on Saturday night and we have Mexican food on Sunday (so I do gain some weight back). As time goes on I am becoming less convinced that Crohn’s has to do with diet. Of course some foods can aggravate people who have Crohn’s. However, until this point I haven’t really found anything in particular. The only thing I do notice is sometimes when I eat something very rich and chocolate it gives me a little pain (although I think I had this same pain pre-Crohn’s). Speaking of pre-Crohn’s I honestly feel like I did before Crohn’s which makes Humira a wonder drug indeed. 

My twin sister came back from the doctor this week and she may have hypothyroidism (autoimmune disease). Our doctor noted it was interesting that almost my whole family has an autoimmune disease (except for my mother). My father has hypothyroidism and as you know I have Crohn's. My father said he took penicillin for years which caused him to become allergic to it and now can't take any medication that is penicillin based. My twin sister also has acid re-flux which everyone else in my family seems to have except for me (I don't drink wine or soda though). In a strange way I think some of these things are connected however I just don't know what or exactly how they are connected yet. 

Thursday, September 13, 2012

Soligenix and Crohn's Patent



Today Soligenix was granted a patent to produce a topical agent to treatment for treatment in pediatric Crohn’s disease. It should be noted that pediatric Crohn’s is a little different than Crohn’s in adults due to the different issues that are faced with younger patients (height, health, weight). The drug works with beclomethasone dipropionate which works in the upper and lower gastrointestinal tract. The drug has been used since the 1970s and Soligenix is trying to develop an oral form of the medication. The company will start trials that should be started this year on SGX203 (oral form). Hopefully another future drug that can be used in the drug arsenal against Crohn’s!

Wednesday, September 12, 2012

Pig Whipworm Treatment for Crohn's and Autoimmune Diseases?


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

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

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

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

Thursday, September 6, 2012

3 Months on Humira: Still Working!



Update: I just recently published a retrospective after being on Humira for 2 years. Pain free since then!

I have been on Humira since June 6, 2012 and it has been 3 months since I took my first Humira dosage. At first I was worried because I thought after the loader dosage I would feel good and gradually get worse since you take 4 shots the first time then 2 and then one every other week. Towards the end of May I was feeling pretty crummy and could barely get out of bed. I was getting weaned off Prednisone gradually but actually I feel better now than I did when I was on 60 mg of Prednisone. Humira really is a miracle drug!  I really wonder how people got by before the biologics were around. I know I saw some literature that showed after a year about 42% of people who take Humira are still in remission. So by definition the odds are I won’t be in remission next June however I wonder if the 58% of people who are not in remission have anything in common.

I thought I was gaining weight on Humira but now am slowly dropping (no vomiting from Crohn’s either Iike I was in May!). The pain in my stomach is different too. Before Humira the pain was sharp like a knife stabbing you and now if I ever have pain it is a combination of feeling hungry and queasy at the same time which is good. Another benefit I have noticed is that embarrassing problem I mentioned in this post is now gone completely. In another post I had mentioned I literally felt a pain in my backside but that however has went away. Perhaps Humira is the gift that keeps on giving. When I was first diagnosed with Crohn’s I spent countless hours online and kept coming across people who believed it was diet. Although, there was some evidence (even peer reviewed) that it may be linked I highly doubt this. From my own experience I know this because I went one week eating no sugar and felt worse. Once I was on Humira I went on a food binge for a week and felt like I was bulletproof. My internist who has an both an M.D. and Ph.D. in biochemistry explained that diet and Crohn’s is garbage which I now believe is true. People forget that Crohn’s is an autoimmune disease and not a diet disease. Given how many obese people we have around the world if Crohn’s was really diet related wouldn’t more than .5% of the world’s population have it? 

Tuesday, September 4, 2012

Crohn’s and Colitis Foundation (CCFA) 990 Form, Fundraising, and Finances


I was doing some research and happen to find Form 990 for the Crohn’s and Colitis Foundation (CCFA) .The latest year I could find was for 2010. In 2010, CCFA made $45.12 million in revenue and had expenses of $48.3 million. This left CCFA with a deficit of over $3 million. However, in the same year CCFA reported a net worth of $5 million ($22 million in assets and $17 million in liabilities). Around $15.65 million was spent on grants while $3.9 million was classified as “other”. Also close to $3.37 million was spent on postage, mailings, and publications. Is CCFA aware that it is 2012 and not 1992? I am all for getting the word out but aren’t there more effective ways of doing the same thing at a cheaper cost? I also saw the organization redesigned their website this year and wonder how much that cost.

The largest contributor was the Leona and Harry Helmsley Charitable Trust ($3.36 million) in 2010. The trust according to their latest financials in 2011 had $4.1 billion of a net worth. Whenever I read research articles I often see the Leona Helmsley Charitable Trust as a provider of funds. Although Leona married a rich man she was a millionaire in her own right before she married. When Leona died she left $4 billion to the charitable trust. She also left money to her dog “Trouble” but that is a whole other story in itself. Other contributors included Abbott Laboratories (maker of Humira), Ortho Biotech Clinical Affairs, and Carl and Edyth Linder.

Many different schools across the United States received grants. Emory University received the largest grant getting $1.8 million, Massachusetts General Hospital received $879,674, and University of Carolina at Chapel Hill got $632,872.

Even though CCFA is a non-profit the leaders should run it like a business. CCFA has a net worth of $3 million. This really does not leave a cushion in case things get bad. For instance, if the economy got worse people would obviously give less to all charities. CCFA should run surpluses in case they run into some tough years. Also as I mentioned before $3.37 million is spent on postage, mailings, and publications. It could be studied how to cut this amount without losing the message. I am usually not in favor of government spending but would have CCFA try to lobby Congress to study inflammatory bowel disease since it is such a debilitating disease and considering how much we waste (millions of dollars is not even a rounding error in the annual budget) it is a small drop in the bucket. Individuals should also volunteer not only their money but time as well to help educate family members, loved ones and friends about this disease. Heck tell random strangers about it!

Wednesday, August 29, 2012

FDA Panel and Humira for Ulcerative Colitis




Some good news might be coming for our inflammatory bowel brother and sisters (those who suffer from ulcerative colitis). In a 15-2 panel decision the FDA recommended that Humira would be beneficial for people who take ulcerative colitis. Humira is already approved for six conditions including Crohn’s disease. The FDA usually follows usually follows the panel’s recommendation however they don’t have to like in the case of a breast cancer drug. We will have to wait until the end of the year though to see what the FDA actually decides.  Last November the FDA rejected Abbott (maker of Humira) application to be used for ulcerative colitis. The FDA claimed that the drug did not show that it helped patients.

 The FDA should know that drugs work differently in everyone and no two people are alike. This is why I believe once a drug is approved for safety by the FDA people and their medical professionals should determine if they should take the drug. Not only would this bring in more competition which would actually drive down the cost of drugs but would make patients more aware instead of blindly trusting the FDA.

What is bizarre is why the FDA has to approve whether or not a drug is effective. Patients and doctors are far better at doing this then the FDA panel. My question would be what 2 people on the panel voted not to approve Humira for ulcerative colitis? Do these people have any family members with ulcerative colitis? Do they know what it feels to have ulcerative colitis? If you said “No” to the two previous questions then go to the head of the class. People have a huge incentive over their health especially when it is seriously. I would be willing to bet that Crohn’s and ulcerative colitis patients are in the top 1% of knowledge of the population since they have a huge incentive in knowing how to get better. 

Saturday, August 25, 2012

Humira and Fewer Heart Attacks?


Good news just came out for those who are taking Humira (well for at least psoriasis anyways). In this news report it appears that treating psoriasis with drugs that inhibit TNF (tumor necrosis factor) could possibly reduce the risk of myocardial incident when compared to other possible treatments. The way I understand psoriasis is that it is an autoimmune disease like Crohn’s however leaves people with patchy and itchy red marks all over their body which doesn’t seem very pleasant.

 In the study Dr. Jashin Wu looked at treatment information and new diagnosis for 9,000 people with psoriasis. In the study which looked at people over 4 years after treatment there were 3.05 myocardial incidents per 1,000 patient years as compared to 3.85 myocardial incidents per 1,000 patients years. This was also lower than the 6.73 rate for patients who took topical drugs. TNF inhibitors may have a 21% lower myocardial risk when compared to other drugs. TNF drugs are drugs like Remicade, Enbrel, and Humira. Hopefully in the future we will have more of these types of drugs to increase competition.

The question of the hour however would be does this study translate into meaning a lower chance of myocardial incidents for Crohn’s patients? My guess is maybe but since Crohn’s is a gastrointestinal disorder maybe not. What probably should be studied is how anti TNF drugs like Humira, Remidade, and Enbrel lower the chances of having a myocardial incident. 

Thursday, August 23, 2012

Tofacitinib Improves Ulcerative Colitis While FDA Delays



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

The drug is being studied to be used in patients with ulcerative colitis however patients with ulcerative colitis take similar drugs to Crohn’s patients. Pfizer (company that makes tofacitibin) is still waiting for the drug to be approved for rheumatoid arthritis and the FDA was suppose to make a decision by August 21 however pushed that back three months to November as seen here.  What is interesting is that tofacitinib would be the first drug approved for rheumatoid arthritis in over a decade. What is even more interesting is that tofacitinib has one of the largest clinical databases for any rheumatoid arthritis drug ever submitted with over 5,000 patients taking it in 44 different countries yet the FDA still needs more time to analyze the drug.
What is encouraging however is that in May a panel of FDA advisors in an 8-2 decision should be approved (FDA doesn’t have to follow panel advice but usually does).  I wonder what would happen if you had a panel of 10 family members of people who either suffered from both rheumatoid arthritis and ulcerative colitis. I would be willing to bet the rent money that that decision would be 10-0 to approve. The FDA panel has no personal experience with these illnesses nor do they see the daily pain that people suffer as the result of these diseases. While I agree the FDA should be in charge of safety of drugs they should in no way shape or form be in charge of how effective the drugs are. By pushing back the possible approval date patients will suffer and be harmed in the process which hardly anyone ever talks about. Also tofacitnib seems much safer than Remicade, Humira, or other drugs. The FDA acts like a cartel deciding what drugs go on and off the market. As a Crohn’s patient I want as many options as possible. Let me as a Crohn’s patient decide what I ingest into my body. After all I do care more about my body than any bureaucrat! 

Wednesday, August 22, 2012

Endometriosis and Crohn’s


In this study of 38,000 Danish women who were hospitalized between 1997 and 2007 and then tracked up to 13 years after their follow up. More women developed inflammatory bowel disease (ulcerative colitis at a rate for than double Crohn’s).  Women who have endometriosis were 50% more likely to get inflammatory bowel disease than the general population. The woman who had surgery to verify that they had endometriosis were 80% more likely to get inflammatory bowel disease than the general population.  In this study the percent chance of getting inflammatory bowel disease was .8%.

Even though women who have endometriosis are more likely to get inflammatory bowel disease a 50%-80% increase in a disease the disease would still affect relatively few women. Although, it is interesting if endometriosis is causing inflammatory bowel disease. When looking at these studies we have to be careful not to assume X cause Y since the human body is so complex and there are many factors involved. 

Friday, August 17, 2012

Humira and Weight Gain


Recently, I have noticed that I have gained some weight while on Humira. My usual weight is between 144-153 lbs. I peaked a week or so ago at 162 pounds when I went on the scale and just felt heavy. As of today I am 160. My father even made a comment asking if I had a potbelly so I really know I was getting heavy I wonder if the Prednisone is still in my body since I have been on it off and on since November. I can still remember wanting to eat 5 times a day on Prednisone. In an odd way it was almost magical even though I was diagnosed with a chronic disease. Most of my days were just spent resting and I still remember sleeping on the couch for a week or so because my parents were worried about whether or not I had enough strength to climb the stairs. In addition to this I also remember being in search of food and actually got tired of eating really well! Anyways, my face has blown up a little bit with pimples however I think that should go away. I thought my hair was thinning however my hair seems to be thicker than before. Most likely I might visit my doctor just to check and make sure I am not getting dangerously heavy. Although I am 5’11 and weight 160 I just feel big. I have been working out every day and have been cutting back on sweets as well. I wonder in some odd way if the extra weight is helping the Crohn’s. I remember reading about an article about people who had abdominal fat here. Although this scientific article claims that Crohn’s disease is associated with an increase in central fat accumulation although I wonder how much this is due to the medication that Crohn’s patients take. I have really never noticed a large Crohn’s patient most seem to be thin or average weight. I myself was lean before I was diagnosed with Crohn’s and wonder if what I ate over the years and excessive working out had anything to do with it.

 When I first went to the hospital I was as thin as a rail weighing only 125 lbs. When I was younger I was large as a kid up until around 13 or 14 and then I began working out and in college I was somewhat of a crazy person working out every day for at least 40 minutes on the elliptical. In graduate school I continued the same pace on weekends I could go for over an hour on the elliptical and it felt really good burning over 600 calories. If I remember correctly a few times I burned over 700 calories. The calories were flying off but I wasn’t always eating the best things. After my work out I would treat myself to Fuzzy’s (Mexican food) refried beans, followed by a Whataburger with cheese and fries, and then a 7-11 brownie for dessert. I am not going to lie this was food heaven. However, I don’t think it was good for my body. As I got older and even before I got Crohn’s I started trying to eat more salads and fruits and branch out

Wednesday, August 15, 2012

Crohn's and Pollution: A Link?


I came across this news story that I found interesting. Apparently, Dr. Josh Korzenik of Harvard Medical School seems to have an interesting view of what may be causing Crohn’s. Northport, Washington is a city of 296 people yet has an inflammatory bowel disease rate that is 10 to 15 times normal rates. The city is located downstream from a smelter in Trial British, Columbia.  Apparently, people could smell the population when they were growing up. This is really interesting considering I have read about always read about environmental factors that could affect whether or not people have Crohn’s but never though it could be tied to pollution. I am somewhat skeptical because of this study that looked at air pollution and inflammatory bowel disease and showed that air pollution was not related to inflammatory bowel disease however exposure to nitrogen dioxide and sulfur dioxide did increase the early-onset of inflammatory bowel disease. There is always the possibly that some other factor is causing inflammatory bowel disease especially in a population that is only 296. Also I would be curious to examine what these people eat. Canada which isn’t too far north of this city has one of the highest rates for Crohn’s in the world yet no one yet has been able to figure out why.  However, these people of Northport, Washington should be examined closely to see what clues might emerge that can help us solve the Crohn’s puzzle. 

Sunday, August 12, 2012

Ken Baumann and His Secret Life With Crohn's Disease




I recently saw this interview with Ken Baumann who is an actor talking about his Crohn’s disease on Dr. Drew. Baumann is an actor who stars on the Secret Life of the American Teenager. He currently is married and is from Abliene, Texas (small Texas town). It is interesting that his birthday is one day before mine (any correlation with birthdays and Crohn’s?) and he is also like me from Texas.

Baumann had surgery in the spring of 2011 and seems to be doing a lot better since then. For Baumann he had part of his small intestine and one foot of his colon removed. It is great to see that he is doing much better after surgery since the idea of Crohn’s is to keep it in remissions as long as possible. As Dr. Drew in the interview points out we have made many advancements in the treatment for this horrible disease and if Ken Baumann and I were both living 100 years ago we might not be living.

Many famous people have Crohns disease. Such people include former U.S. President Dwight D. Eisenhower, Beverly Hills 90210 star Shannen Doherty, NFL quarterback David Garrard, lead guitarist Mike McCready, and music star Anastacia. Plus this also doesn’t include the number of people who have the disease who have not gone public with it. It is good when stars talk about their disease because the public then becomes more aware about it. Although I never wish anyone would get Crohn’s in an odd way the more people that get it the more we can study it, research it, and possible find a cure for it. If you have Crohn’s disease be sure to inform others about it and maybe even possibly tell complete strangers to get the word out.

Wednesday, August 8, 2012

Crohn's and Xifaxan (Rifaximin) and New Venture for Salix


It was recently announced that Salix Pharmaceuticals will pay $25 million in addition to $10 million ($35 million total) to Alfa Wassermann if Xifaxan (rifaximin) is approved for Crohn’s. Currently, Xifaxan is FDA approved but only for traveler’s diarrhea.

In this trial when patients were given Xifaxan and 70% of patients who were not on steroids went into remission. In this very recent study (2011) when 800 mg of Xifaxan was administered to Crohn’s patients twice a day for 3 months (12 weeks) 62% of patients went into remission which is very good and better than biologics like Humira and Remicade given rifaximin has few side effects.

 Xifaxan has been around since 1987 to treat traveler’s diarrhea (approved by FDA in 1998).  One interesting thing I didn’t know was the Xifaxan does not build up antibiotic resistance like other drugs. Also interesting is that the drug is helpful for people with irritable bowel syndrome (IBS). I was diagnosed with IBS in February the same year I was diagnosed with Crohn’s (got diagnosed with Crohn’s in December of that same year). I have always wondered if there was a connection if any. My gastro prescribed hyoscyamine for the IBs and all I really had was a pain in my side. I really just had a pain in my right side.  Right before I got Crohn’s my internist said I had bronchitis and gave me Levaquin, Prednoise, and all in October. I remember with the bronchitis feeling really tired and often just laid on the couch studying cause I really didn’t feel like getting out of bed.  I started having diarrhea right before I took the Levaquin (for a while both my father and I believed this is what was causing me to get Crohn’s). I came home the day before Thanksgiving feeling so tired I honestly don’t remember how I drove to the airport I was so tired.

Honestly, I hope that Xifaxan gets approved for Crohn’s. I have talked before on this blog about how the FDA actually harms people by holding up drugs in development to make sure they are deemed “safe” and effective. I would rather have a system that just looks at the safety and lets patients decide whether or not the drugs are effective. People are different. What works for one individual may not work for another individual. Having clinical tests on small groups of people is meaningless if other people who weren’t even in the group could benefit. Xifaxan seems to be a drug with large benefits and low costs yet the FDA still has not approved it while hundreds of thousands of people suffer every day from Crohn’s. 

Monday, August 6, 2012

Crohn's and Daclizumab



This recent article shows that researchers have found a unique type of immune cell lymphoid tissue inducer (LTi) that may contribute to multiple sclerosis. Now you may be thinking why this is important for Crohn’s patients. Multiple sclerosis (MS) is an autoimmune disease like Crohn’s . I could only find one FDA approved drug that Crohn’s patients and MS both have in common (Tysbari) . However, TNF inhibitors like Remicade and Humira in rare cases can cause MS which is interesting since they are both autoimmune disorders. A trial that ended in this 2007 showed that daclizumab helped patients with multiple sclerosis.

Bibiana Bielekova M.D. found that MS patients who took daclizumab had reduced inflammation and those patients who didn’t take daclizumab had a more LTi cells. What is interesting is that in the research daclizumab can steer the body away from LTi cells. Daclizumab is like Remicade in that it administered intravenously. Although, the only real use for this drug has been for kidney transplants.

What is really unknown is what causes Crohn's. Although we now know more about the disease we really have no idea what causes it which make it harder to treat. With more research and development of new drugs I am know progress will be made to help people who are most troubled by it. 

Crohn's Update: Humira is Working!


Ever since the Humira shots I have been feeling pretty well. Before I took Humira I was a little scared of the injections and the pain people reported. I also remember seeing a YouTube video of a guy that was on Humira and reported how he didn't feel any pain. At first I was skeptical thinking "ya right this guy is joking". Only after a week or so I began to feel better on Humira and I really have not had any pain since. Before Humira I couldn't lay on my stomach cause I was in pain. Now that pain is gone and I can sleep better because of it. I am also skeptical of how diet impacts Crohn's since being on Humira I have let's just say eating things that a nutritionist would call X-rated (donuts, cookies, cake) although I have been eating more salads on a daily basis which may be helping who knows. The only odd thing is that I have had an odd feeling in as Forrest Gump would say "buttox" area. It feels like an itch or pain but I really can't put my finger on it. If it persists I will go to my gastro doctor and ask but it kinda comes and goes and hasn't been that bad. As I mentioned in a previous post I ended up in the hospital (not related to Crohn's) because of a pill I was taking. Right now I am having less than one bowel movement per day and felt like I did pre-Crohn's.

If you read some of the things people write about Humira you would think Humira is horrible and can cause all these side effects, and wonder why anyone in their right mind ever take this drug. People on forums represent a small percentage of what actually goes in in the real world! Even though I have my doubts about the FDA as they hold back medicine that can be beneficial in the name of preserving safety I really don't believe their would be a drug on the market if it was as deadly as people claim. In fact the FDA my be making drugs too safe! Yes, Humira does have side effects and can lead to infections, illness, and even cancer. Again this is a very small percentage of people and the underlying risk and torture of Crohn's also has to be considered. I am thankful that those self-interested greedy capitalists at Abbott Labs (maker of Humira) were self interested enough to make a drug that helps people like me on a daily basis.

Crohn's and Olympics: Connection for Athletes?



With the Olympics here is it great to see someone with Crohn's in representing us! I myself worked out since I was 16 not very hard until I went to college. In college and in graduate school I would work out pretty hard burning 500-600 calories per day and on Saturdays stay on for over an hour. My twin sister who currently does not have Crohn's disease did not work out as hard however what I ate may have been more extreme since I was doing all that working out. Maybe there is some connection between extreme work out and getting Crohn's. I have noticed stories on athletes who have got Crohn's however no one ever talks about a link. It might be possibly due to working out and having a reduced immune system which makes it harder to fight certain things.

Friday, August 3, 2012

Hospital Visit: Not Crohn's Related

Last Saturday night/Sunday morning I was sitting at my desk on the computer when I noticed a burning sensation in my scalp. It felt somewhat odd and I didn't pay any attention to it. A few minutes later I noticed my skin started to feel really warm. I was trying to figure out what was going on. At first I wanted to take a shower but then I realized I was having a reaction to Niaspan a drug I had been taking for a while. I called my doctor (I am with MDVIP which allows patients to contact their doctor 24/7 which comes in handy) at around 3 on Sunday morning. I thought I had hives and he instructed me to take 20 mg prednisone and only go to the hospital if I felt like I couldn't breath. Sure enough 5 minutes later I felt shortness of breath and my parents took me to the hospital to see what was going on. I was surprised hardly anyone was at the hospital on an early Sunday morning. Once I got the hospital things were starting to get better even though I wasn't given anything. My doctor things I felt short of breath because I was nervous and going to the hospital. We had to wait around a little bit and a nurse talked to us and when the doctor came in he told us this can happen even in patients that take Niaspan for years. My doctor told me to take Niaspan with Alka Seltzer and that should help. I want to retake the drug to see if it happens again. I know I can tolerate it but if not I want to visit my doctor to see if he can switch out the drug for something else.

Crohn's and Smoking


According to this article that was just released  people former smokers have a higher risk of developing either Crohn’s or ulcerative colitis as opposed to people who don’t smoke. I have never smoked a cigarette in my entire life and have never drank alcohol, or even soda. Female smokers were 90% more likely to develop Crohn’s and ex-smokers. The longer women smoked the more years had a higher chance of getting Crohn’s disease. What is interesting is that even when people stopped smoking they had a 50% higher risk of getting ulcerative colitis than those who continued to smoked.

No doubt smoking is a waste of time, money, and air. Some of factors for Crohn’s disease like smoking, genetics, and being Jewish are interesting yet I have none of these. No one in my family has ever had inflammatory bowel disease or any other type of gastrointestinal issue. My mother and sister have a mild case of acid reflux and take Nexium however I have (and hope never to develop this).  

Hopefully, researchers can study what irritants in cigarettes create inflammation and maybe find ways to prevent it to help Crohn’s patients. Until then we should all stop from lighting up!

Tuesday, July 31, 2012

Crohn’s Stem Cells, Bone Marrow, and Cure?




Some good news came out of this press release. Dr. George McDonald of the Fred Hutchinson Cancer Research Center announced that they are starting a trial to look at whether bone-marrow transplantation can cure people who suffer from Crohn’s disease. Cure is always a deceptive word. As I learned in economics there are no cures only tradeoffs. The idea is to get the best possible result given tradeoffs faced.

The idea is to swap out the old immune system for a new immune system. The procedure known as allogenic hematopotietic cell transplantation has since the 1970’s.  However one of the major concerns has been the risks including side effects and possible death. According to this November 25, 2010 article in the New England Journal of Medicine 1418 patients received transplants from 1993-1997 while 1148 patients received a transplant between 2003 and 2007. Interestingly over time as knowledge improved and techniques got better mortality decreased overall by 52%. The people that were studied had some serious illnesses such as leukemia, multiple myeloma, and lymphoma (I don’t believe people with Crohn’s disease were studied). I suspect as time goes on the procedure will only become more effective and less risky just as other procedures do.

Some people claim this would be a cure for Crohn’s however I am skeptical of this. In this 2010, that George McDonald did 96% of patients did not relapse after 1 year, 63% at 3 years, and 36% at 5 years. This tells me that even though the immune system is rebooted so to speak that in time it becomes less effective. Although, I wonder if that 36% has anything in common. It would be interesting to study the genes of these people before the treatment to see how different people would respond to the treatment.

Crohn’s patients should welcome new trials as these may be helpful to Crohn’s patients around the world. However, at the same time we should be skeptical of procedures until many trials are done and their effectiveness is shown.

For more information on this trial click on this link

Thursday, July 19, 2012

Remicade, Fecal Calprotectin, CRP, and Flare Up


Clinical evidence from this article that came from the 2012 Digestive Disease Week suggests that after patients were taken off Remicade. In the study CRP and faecal calprotectin calprotectin where used to predict whether or not a patient would get a flare up. Fecal calprotectin and CRP can be measured through a stool sample which is very easy to do.

Patients with high CRP and calprotecin levels were significantly higher in patients that relapsed. For example the patients that did not relapse had a CRP of 2.9 mg/L while the patients who relapsed had a CRP of 4.9 mg/L with a statistically significant P value meaning the results were not due to chance along). The fecal calprotectin was also vastly different. For people that didn’t relapse it was 58 mcg/g and 302 mcg/g for those that relapsed.

C-reactive protein is a measure of how much inflammation is in the body. People with colon cancer had a CRP of 2.69 mg/L which is actually lower than patients with Crohn’s. However, the average for people who don’t have colon cancer is only 1.97 mg/L which to me doesn’t suggest much of a difference. What is interesting however is patients with high CFP levels may benefit from statins (Lipitor). Perhaps Crohn’s patients should be in a trial should be run to see if Lipitor or other statins could help Crohn’s patients. Of course in science we always run the risk when looking at results of assuming cause and effect. Perhaps the patients that released in the study had some other factor that contributed to relapse.  If people with inflammatory bowel disease had a toilet like I mentioned in this post that could measure CRP and faecal calprotein in order to alter gastroenterologists quickly and perhaps leads to additional studies on patterns of when patients may get flare-ups.

Tuesday, July 17, 2012

Smart Toilet for Crohn's?




One invention for Crohn’s or ulcerative colitis patients that would be very valuable is a toilet that can analyze bowel movements. I saw this story about a toilet that can analyze the structure of a stool and send a URL to a patient. The toilet can analyze amount of bacteria, fat, and other important information. For Crohn’s patients and ulcerative colitis patients whether or not the stool had blood and whether or not it was solid or liquid. The results could be sent via toilet to the gastroenterologist who would have that information and get alerts if they saw a patient declining in their health. Hospitals would really benefit from this if they were able to do both stool and urine analysis in patient rooms and have the information sent to the attending physician who could review it. This way hospitals wouldn’t have to waste time giving people little cups or bags to analyze urine or stools. Whenever a patient used a toilet they would be providing data to the doctor and hospital.

The type of kind of data that could be generated with this new invention I believe would help not only Crohn’s and colitis patients but everyone in general. If a toilet was able to analyze to do a urine and stool analysis people could maybe see illnesses in diseases much more in advance and go to the doctor before they got worse. The CCFA should work with toilet makers and scientists in order to develop a toilet that can analyze urine and stool at the same rate as a high grade research laboratory. We literally are flushing valuable down the toilet every day!