C Difficile Negative!!!, CCFA Meeting, 100th Blog Post

Well tonight I received good news. Dr. Khanna from the Mayo Clinic called me around 8 P.M. and confirmed I was c difficile negative (quick turnaround as I sent the stool sample on Monday morning FedEx overnight). The Mayo Clinic puts every other medical clinic to sham in terms of efficiency.  Of course this was of course after I had a fecal transplant which seems to have gotten rid of my c difficile however I have an underlying Crohn’s flare up. This flare up seems more mild than the last one I had around this same time last year. My GI wants to increase my Humira to every week. Tomorrow I will have to call him to confirm I that I no longer I have c difficile. However, I need to call the Mayo Clinic and see what they recommend for the Crohn’s flare up.

Tonight I also attended my first CCFA meeting. There were only around 7 men (I was the youngest person there). It was really interesting learning from different people what they use or have done. I was surprised to learn how many people went years before they were correctly diagnosed with Crohn’s or UC.  People have said Remicade has worked pretty well for them. It was interesting that a older gentleman who was around 70 years old just was diagnosed with Crohn’s after he took an antibiotic (surprised surprise). I mentioned that I don’t know of anyone who has Crohn’s or UC that has never taken an antibiotic. For me I had bronchitis right before I had Crohn’s.

Hopefully this good news will mean I can finally get on with my life in a flare up free environment.

This great news comes on my 100th published blog post. I have enjoyed blogging about my symptoms in addition to current research going on related to Crohn's/ulcerative colitis. For my own selfish reasons I have written this blog to help myself but hope it does reach others around the world and help others as well. 

C Difficle, Crohn's, IBS, or None of The Above

Today, I went to visit my GI. My symptoms are somewhat bizarre. On one hand I am pain free 80%-90% of the day, have a good appetite (yesterday I felt like I was back in my Prednisone days looking up food), while on the other hand I have had diarrhea since early January 2013 (over 3 and ½ months). I have had minor cramping in my stomach as well. Sometimes I have to get up in the middle of the night to go. My energy level is lower than usual as well.  Speaking of sleep the one thing I have been craving is more sleep. On Saturday night I slept for 10 hours and still filled a little tired on Sunday (although this could be due to not getting much sleep the past week from being up in the middle of the night). For some reason I think more sleep has a positive impact on reducing symptoms since when I wake up it feels like my body has restarted in a way. A few times I have gone in my own bed and my mother washed the sheets. This brings me back to my hospital days when that did actually happen a few times.

My GI said he thinks it could be c.difficle, Crohn’s, or IBS. It was believed that I had IBS right before Crohn’s however my GI said it might have been something else. My internist said someone similar too. I can remember the IBS days of sitting in class getting cramps but also getting a bubble in my side (the kind you use to get in P.E. class).

 I did some blood work today and also did a stool test today that I will bring into Quest Diagnostics tomorrow. Actually, when I was doing the stool test I noticed some blood in my bowel movement which I have rarely seen. Personally, some entrepreneur could get rich making an at home stool test or a test that could be done on the toilet. I may have to go for a CT scan (the barium drinking game) but my GI wants to run the blood and stool test first before he does that.

This year has been somewhat of a struggle. I went on Dificid (which worked for about a week or so), then went back on it (only to learn it failed), then went on Questran (which worked for a while, then stopped working, then worked again, only to stop working eventually).  I guess I am tired of not knowing what is wrong with me which can be frustrating. My GI hopes its c.difficle (I do as well because if it is I will be doing a fecal transplant).

My parents and I talked about seeking out a second opinion. I live in Texas which has a decent Houston medical center however does not specialize in gastroenterology. The Mayo Clinic looks like it has a top notch program and I found Dr. Edward Loftus who seems to have extensive knowledge in Crohn’s and inflammatory bowel disease. As I write this he has over 174 publications in peer reviewed journals. There are of course pluses and minuses to doing this. The first is most likely spending a week or so in Minnesota and getting tests done so they can figure out what is wrong and then giving me a diagnosis.

Hopefully, doctors will figure out what I have so I can get better. I wish science had more answers when it came to Crohn’s. Although, I do know that each day we learn more about Crohn’s: what works, what doesn’t work, which will eventually lead to more treatments and hopefully a cure. 

C. Difficile Back, Dificid Again

I apologize for not writing in a while. It looks like my c difficile is back. For months I have been studying for a board exam (Crohn’s/c.diff/IBS has seem to get in the way). After taking Dificid which seemed to work wonders I still believe I have c difficile even though a fecal test showed it was negative (when I did the fecal test the first time I got c difficile it came out negative however when it was redone it came out positive). What makes me believe I still have c difficile is the fact that I have the same symptoms as before (no abdominal pain, diarrhea, and having to go a bunch).  In other health news I also went to the allergist because I was coughing some and my voice sounded really horse (no sore throat or other symptoms though). Actually I think I cured this by sleeping more (I have been having bowel movements in the middle of the night 4 A.M. and such).

I talked to my doctor on Friday March 03, 2013 and he recommended doing another round of Dificid (which can cost $3,000 without insurance however with my insurance it was a little over $100 for a 10 day course). If the c difficile returns I may look for a second opinion to see what is really going on. Personally I don’t believe what I have is a Crohn’s flare up.  When I thing of a Crohn’s flare up I remember the nights I felt and did actually vomit hanging over the toilet, laying in bed at night with sharp stomach pain, and really not feeling good overall. What I have right now is nothing compared to that. My parents keep asking what causes c difficle. Personally I think it was an antibiotic I took over Christmas break when I thought I was getting sick but I think I was just exhausted (I have been having diarrhea since January 6, 2013). On Sunday night (March 3, 2013) at around 10 PM I my first bowel movement was actually solid! Hopefully this continues and I can get on with my life.

As of Monday March 4, 2013 I am still having diarrhea. I don’t know if it takes the Dificid to longer to work but I will be sure to keep you informed. On the bright side I don’t have any pain in my stomach just loose stools that seem airy. 

C.Difficle and Dificid To the Rescue (Humira Working 8 Months and Counting!)

Apologies for not blogging in a while. I have been working and studying for a board exam which has been stressing me out (however not my stomach). What is strange is that while I did a post on c difficile I actually had it and didn’t even know it! The only real changes that have taken place was all the diarrhea I mentioned in my previous post was caused my c difficle. At first I wasn’t too surprised because I didn’t have any pain in my stomach and it felt like I had some type of bug however couldn’t put my finger on it. I took Dificid which was just released in 2011 and seems to have a high cure rate and ran its course on me. Dificid was $115 for 10 days (20 pills). My insurance company actually saved me over $3,000. Of course this is because the FDA allows so few drugs on the market because they require drug companies to spend a decade and hundreds of billions of dollars developing a drug that may or may not get approved. I am all for patients experimenting with drugs that the FDA deems safe and let patients decide if the drugs are effective.

In other news I went to Walgreens to because I thought I was paying a bunch for vitamin D and wanted to get my medicine through Medco because it would be cheaper. At any rate, I asked for my prescription history and actually now have all the medicines I took since I had Crohn’s in 2011. It would be interesting to gather all the prescriptions of Crohn’s patients to see if there are any similarities.

Lately I have also been wondering about diet and Crohn’s. I went to the doctor today to get some blood work (for vitamin D and a booster shot) and was up to 156 which is high for me. Last week I was in training course for 8 hours a day and was eating well at a local diner with grilled cheese, brownie sundae, and an cheddar omelet. Also I haven’t been working out because I have been so busy studying and working. Look forward to working out more.

Humira still seems to be working! I forgot it has now been over 8 months since I started that drug and it has continued to make me well. Every day I seem to worry about the future. I personally would like to see more creative destruction in the Crohn’s research field. A no brainer is to collect data on willing patients with GI Monitor and see if that tells any patterns.  I also have no idea why the FDA bans naltrexone which could be another tool for doctors to use. Fecal transplants I believe could be a game changer for ulcerative colitis. As I mentioned in this post it seemed to put people in remission for over a decade which I would deem a cure. People that suffer with Crohn’s have to take one day at a time wondering what the next day, week, month, even years will be like. We should get people not from just medicine but from engineering, business, and other fields to see if we can improve what we know about Crohn’s in order to take away the pain.

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. 

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.