So on Monday September 23 I was on the toilet around 10:30 A.M. and noticed a cramp in my stomach and all of the sudden passed out while on the toilet (I didn't fall off or hit anything). However, I remember getting a flush feeling spacing out and then gradually coming back to my senses. I was probably out for a minute or two at most. It was a very odd experience. When I had a bowel movement tonight I was worried I would pass out but I was fine.
It was nice because later in the same day I went to a GI who said it was defecation syncope. He said it can actually happen to patients while coughing or urinating. Although, he said it was pretty rare which worried me a little bit. I did some research and it can happen although isn't life threatening even though I read you can die from it within 2 years due to underlying conditions (the underlying conditions are life threatening themselves).
My GI told me to stop dicylomine yesterday (I believe this might have caused the defecation syncope). Dicylomine just treats the cramping. Also I have been feeling very good (100% in fact) and asked if we could scale back the Humira from every week to every 10 days or every other week. My GI mentioned that he wanted to see me on a Thursday (I usually do my Humira shot on a Friday night) to do a blood test and see how much Humira is in my blood. Depending on the blood test my Humira might be cut back.
Today I saw my regular doctor to follow up with the defecation synscope and a blood test was done along with an EKG (just to make sure there are no heart issues. My doctor mentioned that since I am on such odd drugs it wouldn't hurt to do such tests. I seem to be more proactive with my health these days because it seems like you get one thing and realize it lead to something else or be something else (initially a resident believed I had celieac disease, while my father after much research thought it was c difficile, while my doctor said he wouldn't be surprised if it wasn't an infection (meaning c difficle). What was interesting is my doctor use to work with a GI who saw plenty of Crohn's patients (300 actually). What this doctor noticed was that after everything was tried sometimes Flagyl would help patients. However, no one knew why this worked. This came from experience and couldn't be explained by any evidence at the time. These days more researchers are studying why this actually works.
Tuesday, September 24, 2013
Sunday, September 15, 2013
Weekend Links: Smoking, Fecal Transplants for IBD, Remicade Generic, Crohnology, and Lasers for IBD
Smoking and Crohn's
This article studied people who smoke and use to smoke and found that patients who smoked required more treatment that non-smokers. Smokers were more likely to have strictures, receive steroids, immunosuppressants, or on anti-TNF drugs (this tells me the smokers had more moderate to severe cases of Crohn's). Last year I did a post showing that showed that smokers were more likely to require surgery than non smokers (80% increase actually). Also in that post I mentioned that at 10 years the need for repeat surgery was only 41% for nonsmokers and 70% for smokers. The policy recommendation would be to obviously stop smoking.
Fecal Transplants Treating Bowel Diseases
Early data from a study out of Canada shows that fecal transplant may help people with inflammatory bowel disease (IBD). Canada actually has the highest rate of Crohn's disease in the world. The study plans to look at 120 people (as I write this 60 patients have been treated so far). Patients are using enemas in this trial. Dr. Paul Moayyedi said that some patients have done extremely well so far and one patient was in remission for 6 months. Patient Anna Fernande has been in remission since last fall (she has ulcerative colitis). Personally I believe fecal transplants will help the people with ulcerative colitis more than Crohn's. Perhaps researchers can study why this is the case.
Remicade Going Generic?
It looks like Remicade might be going generic in Europe at least. Drug companies are given a patent to market and sell a particular drug for a decade. However, after this time period a drug then become a generic and usually the cost is substantially less. The generic and the real drug made are on the molecular level however in practice and be a little different. However, with biologics this is trickier to do since you aren't replicating a pill. Inflectra would be what is known as a biosimilar to Remicade. What is interesting is in a trial of people with rheumatoid arthritis patients actually did better under Inflectra (the biosimilar) than Remicade the more expensive drug! Inflectra also showed that is had similar side effects as Remicade. Estimates show that biosimilars could save patients $23 billion by the year 2020. However, one issue is this would only be approved in Europe and not the United States. Perhaps we should have some reciprocal approval program to where if a drug is approved in one country it can be approved in other countries.
Crohnology: Crohn's Patients Helping Other Crohn's Patients
This is a pretty good article on a website Crohnology (which I am a member of) were people with Crohn's and ulcerative colitis discuss what they prescriptions they are on and how they deal with Crohn's. The website is powerful in terms of you can track your health everyday and get a text message that asks how you are doing. Crohnology was founded in 2011 and already has over 4,200 people. Patients helping others is wonderful and there may be important knowledge in Crohnology that researchers could use to better understand this horrible disease.
Laser Peers Through Intestinal Walls
A new laser could be used to help determine if a patients needs a colonoscopy or biopsy. The technology can give doctors a more focused approach to where the biopsy needs to take place instead of guessing.
This article studied people who smoke and use to smoke and found that patients who smoked required more treatment that non-smokers. Smokers were more likely to have strictures, receive steroids, immunosuppressants, or on anti-TNF drugs (this tells me the smokers had more moderate to severe cases of Crohn's). Last year I did a post showing that showed that smokers were more likely to require surgery than non smokers (80% increase actually). Also in that post I mentioned that at 10 years the need for repeat surgery was only 41% for nonsmokers and 70% for smokers. The policy recommendation would be to obviously stop smoking.
Fecal Transplants Treating Bowel Diseases
Early data from a study out of Canada shows that fecal transplant may help people with inflammatory bowel disease (IBD). Canada actually has the highest rate of Crohn's disease in the world. The study plans to look at 120 people (as I write this 60 patients have been treated so far). Patients are using enemas in this trial. Dr. Paul Moayyedi said that some patients have done extremely well so far and one patient was in remission for 6 months. Patient Anna Fernande has been in remission since last fall (she has ulcerative colitis). Personally I believe fecal transplants will help the people with ulcerative colitis more than Crohn's. Perhaps researchers can study why this is the case.
Remicade Going Generic?
It looks like Remicade might be going generic in Europe at least. Drug companies are given a patent to market and sell a particular drug for a decade. However, after this time period a drug then become a generic and usually the cost is substantially less. The generic and the real drug made are on the molecular level however in practice and be a little different. However, with biologics this is trickier to do since you aren't replicating a pill. Inflectra would be what is known as a biosimilar to Remicade. What is interesting is in a trial of people with rheumatoid arthritis patients actually did better under Inflectra (the biosimilar) than Remicade the more expensive drug! Inflectra also showed that is had similar side effects as Remicade. Estimates show that biosimilars could save patients $23 billion by the year 2020. However, one issue is this would only be approved in Europe and not the United States. Perhaps we should have some reciprocal approval program to where if a drug is approved in one country it can be approved in other countries.
Crohnology: Crohn's Patients Helping Other Crohn's Patients
This is a pretty good article on a website Crohnology (which I am a member of) were people with Crohn's and ulcerative colitis discuss what they prescriptions they are on and how they deal with Crohn's. The website is powerful in terms of you can track your health everyday and get a text message that asks how you are doing. Crohnology was founded in 2011 and already has over 4,200 people. Patients helping others is wonderful and there may be important knowledge in Crohnology that researchers could use to better understand this horrible disease.
Laser Peers Through Intestinal Walls
A new laser could be used to help determine if a patients needs a colonoscopy or biopsy. The technology can give doctors a more focused approach to where the biopsy needs to take place instead of guessing.
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