C.Difficile Continues, Taking Vancyomycin and Dificid, Fecal Transplant?

So my health has been a seesaw up and down recently. Although today (May 22) and yesterday I have felt pretty well. In terms of symptoms I have been having cramping which comes and goes and not anything close to the sharp pain I had during my flare up. Right before I went into the hospital right before Thanksgiving in 2011 I felt so tired I could barely do anything. I hardly remembering driving to the airport to fly home that day (however I remember studying for a final exam and remember not being able to concentrate). I have noticed some blood in a few stools but not much. 

On Monday morning I was unable to go to work (which takes a lot for me). Over the past weekend I felt really tired and my bowel movements increased. Right now I have been at home resting and just trying to stay hydrated and eat food. I saw my GI on Monday who prescribed another prescription for Dificid (which took about 8 different phone calls between Walgreens, my GI, and the insurance company). My GI also wanted to run a test on how much Humira was in my blood. My GI stated though that if I wasn’t feeling better by this Thursday then I might have to be hospitalized to get some fluids (however I seem to be doing better). I am trying to work setting up getting a fecal transplant with the Mayo Clinic. It looks like I am scheduled to go up there next week for a fecal transplant.

My current pill regime is quite insane. In the morning I take 2 pills for Asacol, 1 Florastore, 1 Dificid followed by 1 Vancyomycin. Then at lunch time I take 1 vancyomycin. At dinner 1 vancyomycin followed by 1 vancyomycin at night, 1 Florastore, and 1 Asacol. Add to all of this one vitamin D pill once a week and Humira every other week. After I started taking the Dificid I began to feel better. I have also been drinking electrolyte water to stay hydrated (Smart Water).

Hopefully the fecal transplants will be the miracle cure. These past few days have been a little dark. However, I am beginning to see the light at the end of the tunnel. Never in a million years would I have ever have guessed both Crohn’s and c difficile would have happened to me. I am 95% sure that the c diff was caused by an antibiotic I use.  In an odd way I think if the fecal transplant was performed and I continued to do them at home I might possibly be able to reverse my symptoms and get off some of my medications (of course I would have a colonscopy done to look at everything and make sure things were okay before I did so). 

FDA Proves Utter Incompetence in Regulating Fecal Transplants: 2,000 People Will Die As A Result

Recently the FDA issued vague and unclear ruling on regulating fecal transplants. When I first saw this I was quite enraged, upset, however not too surprised. On May 2-3, 2013 the FDA held a conference which was preceded by this letter in Bethesda, MD to talk to doctors who were performing fecal transplants.  The FDA is now requiring an IND and treating fecal transplant as a biologic which has pushed back fecal transplant for nearly everyone by 2 months. In reality it will take 2 months for the FDA just to get around to this subject let alone do anything about it.  If 14,000 people die from c difficile every year that would say that the FDA will contribute to the death of over 2,000 people.

What is quite interesting is that fecal transplants have been performed since 1958 yet I have never heard of any serious adverse affects or deaths. According to a 2011 ACG meeting about 5% of patients who received fecal transplants also contracted an autoimmune disease after they got the fecal transplant. However it is hard to say if it was from the fecal transplant or something else. It is important to remember that people do actually die from c difficile. In fact the New England Journal article from this January showed that 94% of patients were cured of c difficile compared to the only 31% who received vancyomycin. Even the people running the study said it was unethical to not give the patients fecal transplants.

Dr. Mike Edmond might be the only doctor with some sense on this matter. Basically from the way he explains it doctors will have to apply for an IND number (doctors have to submit their protocol). Then maybe 30 days after the FDA gets the information they will let the doctors know if they can proceed. The FDA won’t even let doctors know what they are looking for.

Just how incompetent is the FDA? Here we have a treatment that cures 80%-90% who have a life threatening illnesses with the only existing therapies being antibiotics such as Dificid and Vancyomycin which can costs thousands of dollars while the fecal transplant is much cheaper. Thousands of fecal transplants have been performed as well.  However there never seems to be enough data for the FDA. Perhaps the FDA is incapable of performing a cost/benefit analysis. Actually the most expensive part of the fecal transplant is testing the donor’s stool. However, since the FDA has not approved fecal transplants insurance companies won’t cover it.

The result of the new FDA ruling on fecal transplant will cause more paperwork for doctors, more bureaucracy, more patients having to suffer, and more people dying because the FDA doesn’t seem to think anything is safe enough. 

Marijuana 45% Remission in Crohn's Disease and 90% Clinical Response Rate: Why is Marijuana Illegal?

A recent study came out showing that cannabis (marijuana) may help relieve symptoms in people with Crohn’s disease. A complete remission was achieved in 45% of patients while a clinical response was seen in 90% of patients. These numbers would put marijuana on par with Humira or other biologics, however without the possible side effects and for a small fraction of the cost. 

This isn’t the first time there has been this same finding. In 2011 this study was done that 70% of patients using cannabis had a positive effect and possibly may reduce the need for surgery. Nearly 87% of the patients were male. I am curious to know if cannabis would have a different effect in women as opposed to men. Patients with Crohn’s disease often need surgery. However, after they have surgery the risk of having surgery decreases (depending on how severe their Crohn’s is). What is interesting is both of these studies were done in Israel. One problem is that in the United States cannabis is illegal under federal law even though certain states have legalize it. Federal law is superior to state law and at any time people could get thrown in jail for using cannabis.

What is interesting is that 48% of Crohn’s patients have used cannabis during their lifetime according to this study which is only a little higher than the 42% of people in the United States that have used it during their life time.  

Marijuana may not only reduce symptoms in Crohn’s but also multiple sclerosis, chronic pain, rheumatoid arthritis, and other awful disease. The website NORML has a great review of the scientific literature here (and they say potheads are not organized).

The United States should let people with medical issues be able to consume cannabis. Some people claim that smoking cannabis will increase lung cancer. However in one of the largest studies ever done (they looked at people over a 25 year period and couldn’t find any significant increase in risk of lung cancer). Interesting that cannabis may cut the growth of lung cancer. 

What is interesting is that according to a Pew Research poll about 52% of people find that marijuana should be made legal. In 1980, only 24% of people believe it should be legalized which increased to 32% by 2002. Over time I believe this will increase. For people suffering from a chronic illness such as Crohn’s disease, multiple sclerosis, and other awful disease marijuana may help manage these symptoms.  I would be okay with the government legalizing marijuana for medical use which would be much safer than individuals having to go to drug dealers (in states where it is not legal). I personally would not use marijuana until it was okay to do so under federal law. However, if things got really bad I would be open to the possibility. We have to remember that more people die from smoking, drinking, and even eating. Virtually no one dies from using cannabis. What is even worse is that since marijuana is illegal in the United States scientist and researchers can’t study it (why research is done in Israel). The federal government needs to stop harming people and let people use cannabis for medical reasons.  For the people that don’t want people using cannabis I would ask them one question. Have you ever lived with or known someone with a chronic disease?

Review of The Mayo Clinic: The Golden Standard of Medicine (My Experience)

The Mayo Clinic is probably one of the most efficient organizations I have ever seen in my entire life. Personally I haven’t seen Fortune 500 companies that were that efficient. The Mayo Clinic is located Initially I choose the Mayo Clinic not only because they were ranked #1 for Gastroenterology (I later discovered they were ranked #1 for 20 years) but they seemed to coordinate care well.  In just four days I was able to do two blood tests, one stool test, one colonoscopy, and one MRI exam. Although I live near a very good medical center all these tests would have taken at least one month to do. I was scheduled for an additional MR scan however it was scrapped since I didn’t need it. Every day you can login into MayoClinic.org and get the latest results of tests that were done, doctor’s notes, and see your appointment schedule. I was quite impressed that I had a blood test done before lunch time and got the results on my phone by early afternoon. For the blood test you sit in a room with probably 100 people or so. I was probably one of the youngest patients in the room though. Generally I would say most of the people at the Mayo Clinic where in their 50’s or 60’s. This would make sense though because as you get older you generally have more things wrong with you. However, when I went to the GI area there more younger people but still somewhat skewed toward the older population. When you first get there you wonder how long it will take. However they have 4-5 nurses calling in people to get their blood taken. I asked a nurse how many people get their blood drawn every day and she said between 1,000-1,200 people. The use of technology is amazing at the Mayo Clinic. When you print out your itinerary for the day there is bar code located at the bottom of the sheet that can be scanned to check you in. Although, given this you will be asked at least ten times per day your name and birthday. Typically this would take over a week to get with my existing doctors. There is even an app that you can download to your iPhone, iPad, or whatever other device you may have. As you walk around the Mayo clinic you notice people in dark blue outfits that help you if you if you are lost or want to know the best way to get somewhere.

In terms of eating there are many places to eat. I actually couldn’t eat for about 50 hours due to a blood test and colonoscopy. For the colonoscopy I had to drink 64 ounces of MoviPrep. At first it didn’t taste as bad as the last colonoscopy I had. At any rate one great place to eat near the Mayo Clinic is Chester’s. There is a subway area underneath the Mayo Clinic that has places like Subway, Dairy Queen, a bunch of sandwich places to eat. I was intrigued by how many shops they had in the subway area.

If we want to get anywhere with medical care hospitals really should be compared to the Mayo Clinic in terms of effectiveness and quality. The Mayo Clinic is really the gold standard of medicine which explains why people from every single state travel there for medical advice but in addition around the world.

Dr. Edward Loftus: Review

This past week I went to the Mayo Clinic in Rochester, MN. I meet with Dr. Edward Loftus who is really the person you want to see if you have inflammatory bowel disease. I found Dr. Loftus in my research on studies that had been related to Crohn’s. I was actually surprised in how quickly I was able to get an appointment. When I called Mayo had an appointment the following week from when I called (however my schedule was busy that week) so I made an appointment for the week after and was very surprised by this. Getting an appointment with even my regular GI can take a few weeks or possibly a month. According to PubMed Loftus has written over 190 peer reviewed articles. Nearly all of the articles are IBD related and a large portion of those are Crohn’s related.  He also served as an editor board of various peer reviewed journals.  

Dr. Loftus spend a lot of time answering the questions both my father and I had. In our two visits I had we spent close to an hour with him which would probably be equal to 4 or 5 visits with a regular GI. We must have asked at least 20 questions total. Sometimes doctors who do a lot of research are not the most practical doctors. I felt Dr. Loftus was very reasonable in his recommendations and advice. One thing I found interesting was that doctors at the Mayo Clinic are paid on salary which leads to different incentives. I thought it was nice that nearly all of the doctors I could see wore a suit and tie instead of the traditional white lab coat. Not only did he spend time with us he was in top of the field in terms of the studies that were being done and research and you can tell this is his main focus. Dr. Loftus is an inspiration for anyone to be at the top of their game in whatever field that happen to be in.

I am happy with the doctors I currently have but Dr. Loftus really was a cut above the rest. Granted Dr. Loftus focuses on IBD which is a subset of gastroenterology which is actually a subset of internal medicine. Whatever the case may be I felt like a satisfied customer and can see why 50% of his patients come out of state to visit him.

The only downside I saw was that I wish Dr. Loftus and the Mayo Clinic are far away from where I live. However, to me Dr. Loftus seems to be the person you want to see if you have IBD. 

Mayo Clinic Next Week/Prevail Underwear for Crohn's

I am traveling tomorrow to go to the Mayo Clinic tomorrow. I am schedule to have an appointment on Monday and leave on Friday depending how everything goes. 

My current state is better than it has been. Since I have been having involuntary diarrhea I purchased some special underwear to wear which has been working well in stopping the diarrhea. At first before I bought them I didn't think they would work but was very surprised that they seem to block everything from getting out while also keeping in the odor. I purchased Prevail underwear online. The smallest quantity you can get is 80 and it was about $70 but seems worth it if you don't have to wash sheets multiple times a week.

I seem to have a little more energy but still tried. I have about 3-4 bowel movements a day. I am still getting up in the middle of the night (2 A.M. or 5 A.M.) usually. Sometimes I do notice I have to go after I eat as well. 

Hopefully I will get more answers after my trip next week. I know I am looking forward to getting better and getting things back to normal.