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.

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. 

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.

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!