Tuesday, January 29, 2013

Crohn’s Colonscopy, Humira Still Working, and Health Update

So the past few weeks of my health has been both good and bad at the same time. The bad is I have been having diarrhea. Around 2 Mondays ago I actually had to go to the bathroom 7 times in one day! On that day I took a warm bath and actually felted cured (for about a day). The other side effect was I had a pain in my backside which has happened before but made worse by the fact that I was always having to go to the bathroom. The only other recent symptom I have noticed is when I lay down sometimes my upper chest hurts a little (however I think this too has past. My gastroenterologist did some blood work and a stool analysis and noticed my white blood cell count made him “nervous”. He scheduled a colonoscopy which I happily did today. The prep is always the worst part. At 5:30 PM I started by prep and by 8:30 P.M. I finished 6 glasses of Gatorade + Miralax + the 4 pills. Honestly the first one seemed like twice as many liquids.  I did my first one on November 30, 2011 and this one was done today (January 29, 2013) so a little over a year since they have been done. Personally I would not mind doing them every couple of years just to check and see how things are going. Today was somewhat of a blur since I got up at 6:00 A.M. my parents drove me over to the medical center. I remember looking at a clock that said 8:03 A.M. and then saw my GI in a cold room where they gave me some sleepy medicine and I was out and woke back up again (the procedure only took about 20 minutes). 

The discharge from today had some findings on it. Finds were “Normal mucosa in the rectum” “Inflammation was found from the sigmoid colon to the cecum. The findings are improved compared to previous examinations. This was biopsied”. “The examined portion of the ileum was normal”. “Biopsies were taken with a cold forceps for evaluation of microscopic colitis”. My GI said there was still evidence when he looked inside that there was still Crohn's however the inflammation really seems to have gone down.
It looks like Humira is still working despite the diarrhea. My GI talked to my parents while I was in the twilight and said my diarrhea could be controlled with some Imodium which I had been taking for a while. The worst case was moving Humira up to once a week which I don’t mind either. My GI is suppose to call me with the results in a week or so.  Will have to wait and see.
It is somewhat strange I had diarrhea however no pain. To me it seems more bacterial than a Crohn’s problem. Hopefully this will only be temporary and I can get out of this little funk I am in. Living with Crohn’s does always make life interesting. 

Sunday, January 20, 2013

Fecal Transplant Cures C Difficile! Fecal Transplant for Crohn's and Ulcerative Colitis

Recently, this New England Journal article came out showing that 100% of patients who had a fecal transplant for clostridium difficile (c difficile) saw improvement. Usually the treatment for c difficile is taking vancomycin which can cost $55 per ill (ending up costing $2,000 or more over the course of treatment).  This is great news for people with c difficile. Upon doing further research I learned that this procedure now is being experimented on (not formally though for patients with ulcerative colitis and Crohn’s disease). One great piece of literature I found was this meta-analysis which essentially looked at every single study done on fecal transplants for inflammatory bowel disease. Nearly all the studies so far have only been for c diff and not for inflammatory bowel disease.  One conclusion from the meta-analysis was there was a reduction or complete resolution of symptoms in 76% of patients and prolonged remission in 63% of patients.

Dr. Thomas J. Borody seems to be an expert in fecal transplants. He is based in Australia and has done some good research in the area. He did his first transplant according to this article in the 1980’s on a woman who had incurable colitis. It seems after the transplant her colitis never came back. What we need is more experimentation like this in order to get medical advancements. The problem today is the red tape involved with the FDA or federal government that prevents people like us from getting the treatments we need. Borody has performed over 1,500 transplants and currently does 5-6 fecal transplants a week (most are for irritable bowel syndrome which I actually was diagnosed with in February of 2012 in the same year I had Crohn’s). He has even use fecal transplant for non-stomach related issues like acne, multiple sclerosis, and even people with Parkinson’s disease.

In this study of 6 people that Borody conducted with ulcerative colitis all 6 had no signs of ulcerative colitis after 13 years! I looked on Dr. Borody’s website and it seems you can get a fecal transplant for $12,000-$15,000 (in Austrilian dollars which is about the exact same as American dollars) which is just for the transplant and doesn’t include travel or even nursing care. If this could really could help “cure” Crohn’s I really would consider it. However, there are too many unknowns like a) will it work b) how long may it work c) possible side effects and complications. One major problem in the United States is that the FDA has not approved fecal transplants which makes it hard not only to help people but increases the costs of fecal transplants. Insurance companies will not often pay for something that isn’t approved by the FDA or lacks evidence. As more data comes it showing that fecal transplants can help c diff patients that will change. However, we need experimentation with other conditions like Crohn’s, ulcerative colitis, and other autoimmune diseases to really get the ball rolling.

Other doctors in the United States have performed fecal transplants as well. Dr. Alexander Khoruts of University of Minnesota has performed over 130 procedures according to this article. Dr. Colleen Kelly has performed 45 procedures according to this article. Dr. Lawrence Brandt has performed 17 of these procedures (he has been doing it since 1999), while Dr. Christina Surawicz of the University of Washington has performed 16 procedures. Dr. James Versalovic of Baylor College of Medicine in Houston plans to start a intestinal microbiome transplantation program.

Due to the fact that fecal transplants are not approved yet many people are doing it themselves at home. I found and interesting website where a guy who had ulcerative colitis for 12 years did at home fecal transplants and now is in complete remission (he started feeling much better only after 2 days). This sounds good to some people but I personally worry about whether people are doing it correctly, the risks involved, and these people are also not screening the poo that they use to transplant which can present risks.  Right now donors are usually family members or relatives since their medical condition is usually known. The largest cost of the whole procedure is screening the donor which can cost $1,000 according to this article.

This article discusses how the fools at the FDA seem confused since “feces” doesn’t fit into anyone of their main categories. We need many doctors and patients experimenting with fecal transplant in order to spread knowledge of the best way of doing the procedure. Knowledge is power. It looks as if fecal transplants may have a role in ulcerative colitis but time will tell if it can help for Crohn’s. I would also wouldn’t mind seeing a market for feces where people could give it and collect money for it like they do for sperm or blood. Companies could pop up that would screen the feces and could grade it and let people decide which kind they wanted to supply. I have a feeling drug companies might be interest as well because they pay be able to find a mechanism that works similarly like feces to give the same result. Given there are 500,000 cases of c diff every year we will need a lot crap. Also it would be interesting to see if fecal transplants can help other autoimmune diseases like psoriasis, rheumatoid arthritis or other things like acne, Parkinson’s. Every day that goes by is another day a patient suffers. People need to get over the gross factor and we need to start doing things that are proven to work. 

Monday, January 14, 2013

Diarrhea, No Pain, No Vomiting, Gaining Weight = Anti-Crohn's

Getting Crohn’s is always an interesting journey. So the past week hasn’t been the best. I have had what I would call small diarrhea (try to go number 2 and only bits and pieces come out). This has been going on for the past week or so. I did eat a Nestle Toll House brownie sundae and all this started after this however could be a coincidence. Today at work it was really bad. I went to the bathroom between 9-12 4 times or so and felt really bad for missing work. My body was crazy. Last night I was a little blue as I sat and wondered why on earth I would be given such a dreadful disease. I however, thought of the future possibilities of drugs and treatments that might be available and that gave me hope.

What is really odd though is that I haven’t had much pain, vomiting, nausea, and have been actually gaining weight which I told my GI is anti-Crohn’s. He laughed and said it was strange. I did some blood work at the hospital he was affiliated with and was given stool samples.  My GI said not to jump to any conclusions and we had to wait until we had some data which I am all for. There could be something else going on. I know in the test work he asked for c diff to be tested.  What is interesting was when I was in the hospital (before anyone knew what I had) my dad was 110% sure it was c diff until my GI said it wasn’t.

Speaking of this afternoon on the way home from the GI I felt like I had to go every 10 minutes or so. My bum was really sore. I thought the first thing I will do when I get home is to take a warm bath. I got home and took a warm bath and felt pretty amazing after. I felt like I had cured some diseases by doing that. I noticed after the bath I didn’t have to go as much. I took the bath around 3:30 pm and didn’t feel the urgency to go until around 7 or 8. The bowel movements have been much more liquid which is an improvement. I took a bath right before bed (around midnight). It helped but wasn’t the same as the first. I probably will do at least one bath a day to relieve some of the muscles since they really have been worn on being on the toilet.  One thing that was somewhat scary was I was curious to see how inflamed my butt was and when I got out of the tub I dried off and saw a red mark on near the anus which was somewhat scary. I know it has been through a lot and hopefully soon it will stop. I had a bowel movement right before the tub (some of it looked like it had blood in it but I couldn’t really tell).

I am also going to try to watch what I eat. This afternoon I had a three egg omelet with cheddar cheese (ate the whole thing too) which was quite amazing. The meal came with fries and I had a couple. For dinner I had chicken noodle soup. My goal this week is to reduce sugars. Next week I will work on grains, bread, and starches. Although, there is no good evidence on diet I figure what the heck and should at least attempt it. I will monitor my progress and see how I do and be sure to blog about it.

These days the small things in life make me happy. Just feeling normal seems to be perfect.  I guess if I knew I would get Crohn’s at 25 on December 14, 2011 I might have lived my life differently. Never in 100,000 years would I have thought I would get a disease like this. For all my life I was perfectly healthy and never had a health issue besides asthma when I was younger. Perhaps as someone with a chronic disease I will go the rest of my life wondering what would of happen if I didn’t have Crohn’s. I have been on Humira for over 7 months and wonder if it is still working or if something else is going on. One thing is for sure though. I will keep fighting this disease until I stop breathing.  

Tuesday, January 8, 2013

Health Update and C Difficle Cure

I am not sure if I am entering another flare or not. Although, I am not a GI I think eating a brownie sundae both Friday night and Saturday night did not help. I am working this week on my diet to see if I can shake it off. My stools are somewhat loose however I don’t have much pain. The pain I had in the last flare up I was staying up at night and could feel the stabbing pain in my stomach. There have been some instances where I have had a flare for one day and then the next day I am perfectly fine. Next week I see my GI and I have a bunch of questions for him so hopefully that will help.

In somewhat IBD related news there now might be a possible cure for c. difficle with “fake” stools. Researcher Dr. Emma Allen-Vercoe and her research team created an artificial stool which is grown in the Robo-gut (looks like vanilla milkshake). The procedure is seen as a super probotic. Normally fecal transplants are done which can knock out the c.diff but is not pleasant for patients. Doing the fecal transplant repopulates a person’s colon.

When I was in the hospital my father was 110% sure I had c.diff. He kept asking the doctors to run stool analysis tests and he researched the way stool analysis had to be done and my GI told him that he was pretty sure it was Crohn’s before the colonoscopy and then confirmed I had Crohn’s after.

I would love to see this tried first in more people with c.diff and then people with IBD to see if there is any help it can provide. The problem is often times these things can take years to get onto the market because of approval, compliance, regulation, and other burdensome requirements.


Wednesday, January 2, 2013

Crohn's 2012 Year in Review: 7 Months on Humira Still Working!

I was going to write a Crohn’s year in review but got a little side tracked with studying and work. So in less than a week I will have been on Humira for 7 months and still no pain (which even I am surprised about). No real side effects. The only thing I really had had was related to dental issues with plasma cell gingivitis. I plan to see my GI and show him the report the oral pathologist wrote. I downloaded my WellsApps report on December 31, 2012 (it was over 75 pages). I wish I could just plug it into Excel and do some analysis in there. The only other app I wish for is one that asks you your weight. I would think if you were having a flare up you would be losing weight pretty quickly and that might be an indication of something going wrong.

Right before Christmas I went to Dallas to visit an old roommate from college. I honestly never felt better in my entire life (even though it only took me 3 ½ hours to get from Houston to Dallas driving). I thought I was having a cough right before the trip (left on a Thursday came back on Sunday). My internist prescribed clarithromycin which seemed actually I think helped me even more! I did some research and this article seemed to show that it does help in the short run but not in the long run. During the trip I went to In-N-Out and ate a double double with fries. Burger tasted one step above heaven fries need work. Went to Braum’s and got a double brownie sundae. The last day I went to Krispy Kreme and got a dozen donuts for my family (plenty of Christmas donuts). I actually didn’t feel much pain the whole time. I was doing an experiment to see impact on food and it seems as if food didn’t win.

In terms of research 2012 was a great year. In December 2012 200 genes were found related to Crohn’s (currently more than any other condition). In November a woman claimed eating bark cured her Crohn’s.  This story I recently sawed happened in 2009 but the trend shows kids that from 1994-2005 there was a 33% increase in the children’s population. In October Michael Seres who suffers from Crohn’s received a bowel transplant. Also in October STELARA was shown to help patients with Crohn’s. In September Humira was approved for ulcerative colitis (I hope they are doing well!). This study in September showed that kids who take antibiotics are at an increased risk of getting Crohn’s. In April the MAP test was talked about as a new possible additional test for Crohn’s. In February vedolizumab was shown to be beneficial. In April I also posted this video of a patient who had improved on SSI treatment and was able to have a kid (remission rate was 75% which is quite high. I do look forward toward 2013 and what new research comes out or if any novel treatments show improvement for IBD. 

So I started WellApps on March 8, 2012 and use to kept track of food however after I started Humira and felt no pain I thought why bother? It is pretty cool looking at what I use to eat. I can actually remember certain meals I had even though they were 10 months ago. Seems to be easier to remember when you write things down. So from March 8, 2012 until when I first started Humira on June 6, 2012 MyQOL was 9.5. I had about 1.6 bowel movements per day with a low 1.1 level for pain. However when I did a week before I started Humira MyQOL was 7.8 bowel movements was 1.6 (most were mixed and not solid and my pain was 1.7). I was also holding my head over the toilet at night vomiting during late May from what I remember.  For some reason I think I have a high threshold for pain since I didn’t even know I had to be hospitalized originally. These days MyQOL is a perfect 10 having .5 bowels movements per day (all solid) and 0 pain which is amazing. 

My goal for 2013 is to remain in remission and avoid the hospital. I hope Humira continues to work its magic has it has been almost 7 months already. Hopefully we will continue to learn more with each passing day about this dreadful disease and find research that can be translated into something practical that can not only benefit lives but stop the pain.