Thursday, February 27, 2014

Importance of Not Skipping Meds For Crohn's

So this morning I forgot to take my Asacol. Right now I take 800 mg (3 times a day along with some 3-omega fish oil since my bad cholestrol is a little high (although I have started to eat salads for lunch which so bring this down/working out more). According to this article about 50% of patients with chronic illnesses don't take their medications. Part of the reason might be cost of the medication. The other part of the puzzle might be that patients might believe that the medications they are taking my not help them.

When I didn't take my medication this morning my stomach felt a little cramped. This morning I had to wake up early for a meeting (usually my body likes extra sleep in order to heal-just a theory). I had to go almost the whole working day without taking it and when I got home took 1 pill and then took 1 in the evening and 1 before med. If I learned anything about the human body it is that it likes this in dosages that are spread out. Asacol seems to mellow out my colon and tells it to chill out. I have rarely missed taking my medications. Today serves as a reminder to make sure to take all your meds. Speaking of meds I am due for my every other week shot with Humira tomorrow night. Usually I have a loose stool on Friday or Saturday night but recently that hasn't been the case.

Tuesday, February 25, 2014

Sam Faiers Diagnosed With Crohn's Disease: A Viewpoint From A Crohn's Patient

So recently Sam Faiers came out and said that she had Crohn's disease. I live in the United States and she lives in the UK so I am not familar with her (although she is pretty attractive) and is a model and reality TV star in the UK. At any rate Sam Faiers is only 23 years old and lost a stone and a half (21 pounds for those in the United States). She started to lose weight and realized it wasn't just a stomach bug. Crohn's actually does affect 100,000 people in the UK. Sam said she couldn't hold food down for almost a month. Currently, Sam is drinking shakes (all-liquid diet for the 6 weeks in order to give her bowels a rest).

Sam has an experience that many Crohn's patients have. When I was in graduate school and got symptoms I had no idea what I actually had. I remember feeling very tired (pretty similar to when I had mono in college) but actually felt tired before the stomach issues started to come up. My father who is a chemical engineer researched everything and told the doctors it was c diff and they told him no it was something else. My GI suspected it was Crohn's and actually confirmed it via a colonoscopy. Catching Crohn's early on can not only help the patient but reduces the risk of having surgery. I have not had surgery yet and continue to take Humira (I started it June 6, 2012) and feel actually like I did before Crohn's (some days I even forget I have it to be honest). Getting the diagnosis for Crohn's or any illness is the best feeling you can get. I still remember feeling a little bumped knowing I would have Crohn's the rest of my life (unless we find a cure). However, the human mind constantly is creative and creating things we never thought possible. Think about it 20 years ago would you have honestly imagined some of the wonderful technology we have today? 

I hope Sam Faiers gets well and gets herself into remission. However, maybe the silver lining is raising awareness about Crohn's which is positive. Sometimes I tell even random strangers about it just to spread the knowledge and awareness. 

Monday, February 24, 2014

More Sleep, Dry Nose, and Cold Water

So in my last post I talked about how I didn't get much sleep last weekend and had a dry nose. So this weekend I did a little better on sleep getting about 9 hours on Friday night which made me feel really good all day Saturday and last night I did pretty well on sleep about 8 hours or so and felt okay this morning.

For my dry nose I bought a humidifier from Target and used it last night. This morning I woke up and it felt like I wasn't as dry as usual. The humidifier has 2 levels (low and high). However, the high level can be a little loud so while I was sleeping I had it on the low setting.The other thing I bought for my nose was NeilMed for dry nose gel and it seems to have helped. I had Mexican food last night (Sunday night) (chicken tacos with refried beans and rice) and didn't feel too bad.

This weekend I had a few green bowel movements (which has happened to me before). I really don't get worried unless I start losing weight and feel cramping which I am actually weighing about 165 these days (however I don't feel large I just feel more filled out).

A couple of days the past week I went swimming in semi cold water which felt great. However, it didn't have the same effect when I swam in very cold water last fall (it does feel pretty good though). The water temperature was about 65 degrees making it chilly but not unbearable.

The start of 2014 has brought me pretty good health and I feel just like I was pre-Crohn's which I count as remission. Hopefully, this will continue into the near distant future.

Sunday, February 16, 2014

Sleepless Weekend, Ice Pack, and Dry Nose with Crohn's

So this weekend was somewhat interesting. On Saturday morning I woke up around 9 am and had gone to bed around roughly 3 or so and felt out of it most of the day. I usually need 8-9 hours of sleep to feel reasonable. With 6 hours I felt a little grumpy and zombie. Years ago around junior year of high school I got 5 hours of sleep one night and remember the next day feeling like the longest day ever. In high school I use to get up around 6 am to either catch the bus or drive in. In the afternoon I went to work out and felt pretty bad (just very tired). For dinner I had eggplant Parmesan which I have had before, however around midnight I had a semi mixed bowel movement. About 20 minutes later the bowel movement was completely loose (reminded me of my c diff days). I lost roughly 3 lbs in the bathroom (if my scale is right). For some odd reason on select Friday or Saturday nights is when I do have a small episode of diarrhea (not exactly sure why). At night for a while I have been using ice packs (even though no pain-although m stomach at night churns after taking Asacol). 

This morning I woke up with somewhat of a headache (which is pretty rare for me). I went to sleep around 1 in the morning and woke up around 11 and felt this semi-good sleep (mostly because my body was catching up on sleep). Sleep is like a bank account sometimes you don't get enough and have to more than make up for it on weekends. I felt much better today but still feel a tad tired. Hopefully, tonight I will get a good rest before work tomorrow. I haven't had a bowel movement all day today so that is good. 

So the past few weeks or so my nose has been very dry. I usually do SinusRinse (which can be gross at first but does work wonders). Where I live it has been cold recently but with all this stuff in my nose my nose feels stuffed up. I went to Walgreens and bought some NeilMed stuff for dry noses. I have noticed when I take a shower my nose does feel a lot better with the moisture. Hopefully this dry nose is temporary. 

Monday, February 10, 2014

PillCam Approved: Will This Help Treating Inflammatory Bowel Disease and Save Billions in Healthcare Costs?

PillCam for colonoscopy testing

So the past week the FDA approved the use of PillCam (mind you it is approved to be used in 80 other countries already-the FDA seems slow at this). Note that more than over 1.5 million patients have used this and the FDA is just now getting around to approving it. Colonoscopies can be pretty expensive and as this New York Times article points out can vary depending on where you are in the United States by thousands of dollars. The average price for a colonoscopy in the United States is $1,185 however in Switzerland is only $655.

Given Imaging is the company that makes the PillCam.  The camera is battery operated and takes pictures for about 8 hours and then sends those pictures to a doctor. The patient wears a recording device about their waist. The company has been producing the PillCamera since 2001. One drawback are the images are not as great as an actual colonoscopy. Also if you actually do have a polyp the doctor then has to go in via colonoscopy and get rid of the polyp. However, there are patients who can't complete a colonoscopy (anatomy, previous surgeries, colon diseases, etc). which is about 750,000 people. The PillCam is only $500 which is much less than $4,000 for a typical colonoscopy (an 88% decrease in cost). According to estimates there were about 14.2 million colonoscopies performed in 2002. So just by sheer growth that number is much greater than that today. Now if you had a few million people take the PillCam instead of a traditional colonoscopy you could start saving billions of dollars in healthcare costs.

The company does make a pill camera just for Crohn's which is PillCam SB (Small Bowel). According to the company 75% of Crohn's patients have legions in their small bowel. What is even more interesting is that 62% of Crohn's patients changed their therapy within 3 months of using the PillCamera. The procedure is pretty easy. It requires patients just fast the night before and then you go to the doctor's office and wear a belt around your waist over your clothing, swallow the pill with a tall glass of water, then come back to the doctor's office after the images are sent. The PillCam passes through the bowel movement within 24-72 hours after you ingest it. There are of course risks which are very small (less than 2%) however for Crohn's the risk of retention with the PillCam is 5% (I would imagine if you had a stricture). Since Crohn's and ulcerative colitis patients in general have complications the PillCam might be something that could supplement a traditional colonoscopy. GI's could give monitor Crohn's or ulcerative colitis every couple of years (with a lot less hassle of having to do the nasty prep-honestly the prep for the colonoscopy isn't bad I have had 3 since 2011 and my advice is to start the prep as early as you can).

No question over time the technology will improve, the images will get better, the pills smaller, and the complications will get reduced. Gastroenterologists will have to do fewer colonoscopies which would mean more time to spend with patients. However, gastroenterologists may not be happy if a pill camera is able to replace a job that they do. GI's are some of the highest paid doctors making on average over $340,000 per year and 4% make $750,000 or more (I would assume these are researchers, administrators, or they own a practice). Gastro doctors have to spend 4 years in medical school, 3 years of internal medicine residency, then 2-3 years of a fellowship. My GI for example graduated medical school in 1984 then did a one year internship then 2 year internal medicine residency, then 2 year fellowship for gastroenterology (ending his fellowship in 1989-so 5 years total after medical school). So essentially gastroenterologist go to school or have training for almost a decade after they graduate college! No question though that the PillCam will be an added improvement, potential to save billions in healthcare costs, increase monitoring of Crohn's and ulcerative colitis and most importantly may spare many people the process of having to do the prep the night before!

Monday, February 3, 2014

Weekend Links: Drugs Cut Surgery by 60%, Texting, SCD Diet Study, Marijuana Helps Crohn's, JAK1 Study for Crohn's, Golimumab, Fecal Transplant Helps UC and IBS

(Note: I started this post on Saturday however wasn't able to finish it as I saw some more stories to add).

Drugs Cut Need for Surgery By 60% 
     You could say if there is any time to get Crohn's if you had to get it. So in a study that looked at 5,000 patients and looked at the effect of the thiopurine drugs. Azathioprine  for more than 12 months had a 60% reduction within the first 5 years of diagnosis. Thiopurines have been around since the 1970's.  

Texting Helping Children with Crohn's 
      The medical expenses for treating IBD are quite high. Estimates place of IBD is roughly $1.8 billion according to the CCFA. So one way to bring down the costs may be using doctors in order to get patients and doctors to communicate with one another. A clinical trial is taking place at Cincinnati Children's Hospital were an application which uses information from the user and sends it back to the doctor. Patients can respond if they are taking their daily medications and how many times the patient felt sick. The app can track the behavior and get an early idea of when a flare up might occur. The CCFA website has an app called GI Buddy that people can download and track nearly everything related to IBD (bowel movements, what you eat, how you feel, etc). Technology is a no brainer is reducing costs related to not only Crohn's but other chronic illnesses. If you had data on 1,000 different Crohn's patients and ran some analysis on it you could find patterns (what foods help with Crohn's, what foods are likely to cause a flare, what medication works, etc). If patients were able to have their information sent to doctors and doctors could data mine the data to see what patients needed to be responded to first it would make things much more efficient (for both the doctor and patient).
Small Study on SCD Diet 
     So in a very small and uncontrolled trial Dr. Ece Mutlu at Rush University looked at 20 patients who adhered to the specific carbohydrate diet (SCD). There is plenty of controversy about this diet. The Crohn's and Colitis Foundation (CCFA) doesn't believe that diet helps. However, if you read internet stories you can find dozens of people who have seemed it helped. This study just looked at the intestinal bacteria. Mutlu claims that some of his own IBD patients have "drastically improved" with mucosal healing and were able to discontinue their immunosuppressants for several years.

Marijuana Treats Crohn's (How Many More Studies Do We Need)
     In a recent study published in the journal Pharmacology showed that cannabis has been shown to help people with cannabis. I have not seen anything published that shows marijuana has a negative impact on Crohn's. This study showed that 70% of patients improved after treatment (this first study was done in 2011). In a follow up study found that 90% of patients had a decrease in their symptoms while 45% of patients had a remission of their Crohn's. Clearly, cannabis should be something that is studied more to see if it can help people with Crohn's. With Colorado allowing people to possess cannabis without any legal trouble it seems perhaps more people will be able to experiment and see if it helps them.

Galapagos Phase 2 Trial For JAK1 Inhibitor for Crohn's 
According to this press release to conduct a phase 2 trial on a JAK1 inhibitor. In the past JAK1 inhibitor as pointed out by Dr. William Sandborn here. Dr. Edward Loftus had a concern about the lipid effects as the drug did increase LDL (bad cholesterol) however Loftus said it wouldn't be a deal breaker. The trial will enroll 180 patients (over 49 different clinic centers around the world) for a 20 week trial.

Golimumab Maintains Clinical Response in Patients With Ulcerative Colitis
     In this phase 3 trial patients were given either 50 mg or 100 mg (subcutaneous injection). There were 464 patients that were enrolled in the trial. Roughly 47% of patients who took the 50 mg treatment were in remission as opposed to the nearly 50% of patients that were in remission in the 100 mg group. 3 patients did die (they were all taking the 100 mg dosage too). Also remember that 3 patients out of 464 is a little more than 1/2 of 1%.

Fecal Transplant Shows More Promise for Ulcerative Colitis and IBS
      So fecal transplant which by the way I believe saved my life is being studied for digestive disease such as Crohn's and ulcerative colitis. All the data I have suggests that fecal transplant would benefit ulcerative colitis patients more than Crohn's patients. Dr. Brandt who has been doing fecal transplants for a long time reported that 63% of his patients (16 patients had IBD-with 14 having UC and 2 having Crohn's) had a lower frequency of flares after they had fecal transplants. The diarrhea also decreased by 56% (8.2 bowel movements to 3.6 bowel movements) after the fecal transplant. Symptoms resolved in 29% of patients and decreased by 43% of patients (21% of patients saw no change). Which means almost 80% of patients saw some benefit to a fecal transplant. Dr. Brandt also looked at fecal transplant for IBS patients and found that 73% of patients had a complete or partial resolution of their symptoms.