Mid-Week Links: Increase Pediatric Rate For Crohn's, Mayo Opens C Diff Clinic, and Crohn's Man Has Colon Removed Is Able To Swim...

Increasing rates of pediatric Crohn's
     My heart always goes out to children who get Crohn's. I was diagnosed with Crohn's when I was 26. However, I really don't know how bad it would be to be a young kid and be told you have Crohn's. This study shows that from 2000-2009 the hospitalization discharge rate for Crohn's increased 59% while the percentage for ulcerative colitis increased 71%.

Mayo Clinic Opens C. Difficle Clinic
     I am glad I received my fecal transplant at the world class Mayo Clinic in Rochester, MN. I am pleased to see that the Mayo Clinic is now opening a c difficile clinic.

Crohn's Man Swims Across Lake Erie (Without Colon)
     In this great story Ryan Stevens (who suffers from Crohn's disease) had 5 feet of his colon removed (temporary ileostomy which was later reversed). This article shows a picture of Ryan in the pool and you barely notice any scarring from the surgery. Ryan is raising money for Crohn's. Ryan has his own website too.

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. 

Life After Fecal Transplant

So my symptoms I would say are a little better than before I had the fecal transplant. I have minor cramping but it is a shade below of when I had it before the fecal transplant. I feel a little tired but not nearly as bad as before I had the fecal transplant. I also don’t feel as dehydrated either.  My parents noticed that I don’t have to run to the bathroom right after I have a meal either which is nice. My bowel movements have decreased a little bit from the 5-6 times I was going before I had the fecal transplants. The Sunday after the procedure Dr. Khanna called me to see how I was doing. I told him I was still having diarrhea but felt a little bit better.

Bowel Movements Per Day

Friday (Day of Procedure)- 1 (after fecal transplant)

Saturday- 3

Sunday-4

Monday-4

Tuesday-4

Dr. Khanna called me back today and we agree he would send me a c difficle test kit to make sure I was still c diff negative. However he wanted me to wait until Monday to do it (given it will have to go via FedEx back to the Mayo Clinic. The idea is that you can’t treat c difficile with Prednisone if you have an underlying infection.

My situation is a little bizarre in a way. I don’t feel I am having a Crohn’s flare up because I remember how bad I felt when I did have a flare up. I was vomiting, I felt as if someone was stabbing my stomach, and pretty miserable. Honestly, I don’t feel 100% right now but I would say I am still much better today than I was last year when I had a flare up around this time. My personal observation is that I have pain 30% of the day while pain free 70% of the day. The pain is all below my belly button. 

Patient Number 44 for Fecal Transplant at Mayo Clinic

So today (May 31, 2013) was my fecal transplant. It was quite a long day. My fecal transplant appointment told me to be there at noon however the procedure didn’t start until closer to 3:00 P.M. Dr. Thomas Viggiano performed the procedure. The procedure went relatively well. Other than a nurse sticking my hand twice to place in the I.V. it was fine. During the fecal transplant the it was noticed that I was still having bowel movements during the procedure (I did drink plenty of water after drinking all the bowel prep).  He also noticed that I had moderate-severe colitis in my colon. However, I had a colonoscopy earlier this month done at Mayo at those were the same findings.  One question I would have is if the inflammation got worse. Also since the c difficile is doing harm on the colon. At any rate 250 cc’s of stool was inserted into my cecum and the idea is over time the healthy bacteria will find a new home and kill off the c difficile infection. I stopped vancyomycin and Dificid and will continue to do so.

The idea now is to wait and see how I do. Even though I had the procedure a couple hours ago I feel relatively good (however some of this might be the anesthesia). Right after the procedure I was given some cookies and water to hydrate and get some food inside of me. After I was all done I had a burger and fries (having to fast I was hungry but not as hungry as last time when I had to fast for 50 hours due to multiple tests). I have had to pass a little gas but haven’t had a bowel movement 5 hours after the procedure. Tonight, tomorrow, and this weekend will be a better indication. The goal now is to make sure I am c diff negative. If I am c diff negative then perhaps my Humira will have to be increased. 

Meeting With Dr. Sahil Khanna (Great Doctor) Before Fecal Transplant

So today was a pretty efficient day. We left our hotel around 11:30 A.M. and ended up at Mayo a quarter before noon. The blood test on my schedule was at 9:20 A.M., however you pretty much can go whenever to get a blood test. The only requirement was the blood test was 2 hours before our appointment. My appointment was scheduled for 4:15 P.M. We had some lunch (the only thing I could have was chicken broth which Mayo has in their cafeteria (since I am having my colonoscopy/fecal transplant procedure tomorrow). Since we got to the clinic early we had a question regarding the bowel prep. Our appointment was 4:15 P.M. and sometimes you don’t start until a little bit later and we just wanted to make sure I had the bowel prep tonight. So a nurse actually paged Dr. Khanna to ask him and he said he could met with us to discuss the fecal transplant procedure.

Dr. Khanna was very nice, intelligent, and really knew his stuff. He spent about half an hour with us. Much of the time was asking me questions about c difficile and Crohn’s history.  Dificid does have a 90% response rate. Dificid has a 15% recurrence rate. However, one problem with clinical trials is that it excludes IBD.

He then showed us pictures of the facility the fecal transplant was done in and also described the process. Mayo uses a $7,000 Stomacher blender which is pretty sophisticated. Dr. Khanna had mentioned some doctors at national meetings would say they were doing fecal transplants with martini mixers.

The screening process is pretty rigorous for the fecal transplants. Screening donor and donee are both tested for HIV, hepatitis, and syphilis. The donor also can’t have any medical problems. The donor has their blood and stool tested. The actual transplant is pretty interesting. It only takes about 5 minutes more than a regular colonoscopy because they have to inject the fecal material. After the fecal transplant possible side effects include: cramping, constipation, bloating, and possible farting (I haven’t noticed any of these). Best case diarrhea will completely go away. The fecal transplant has over 2,000 probotics while the most you can get out of a probotic is 4.

Non IBD patients 3 days IBD days 5-10 days resolution give it two weeks before it fails. Gradual improvement should be seen. So far Mayo has had 10 patients with IBD and c diff 6 out of 10 had resolution of all symptoms.  One question I had was if I did get sick again should I take an antibiotic and Dr. Khanna told me I should take Florastora when I take the antibiotic. He actually had one patient who had 15 rounds of antibiotics and took Florastora with it and didn’t have a recurrence of c difficile.

Dr. Khanna was nice enough to follow up with me on the Sunday after the procedure. I told him my symptoms and that I was doing a little better. I really appreciate Dr. Khanna and the Mayo Clinic team. 

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. 

C. Difficile Positive, Dificid (Third Time) and Going To Mayo Clinic

So this week has been somewhat crazy. My condition is okay right now. I seem to be having 5-6 bowel movements per day (all watery stools). A few times I have gone involuntary and my mother has had to wash the sheets (I feel bad my condition makes her have to clean up after me).  It is odd but nearly all the bowel movements are either early in the morning or late at night. Some nights I wake up at 5 A.M. and have a bowel movement. During the day and afternoon I hardly ever have to go. I have noticed some cramping (at night mostly) and sometimes during the day. However it only lasts for maybe 20 second and goes away. My weight is doing okay. Right now I weigh 150 (with zero clothes on). However, I get really hungry which is a good sign.

On April 18, 2013 in the evening my GI called my cell phone and informed me I had tested positive for c difficile. We talked about what to do if Dificid didn’t work. I brought up fecal transplants and he said he thought maybe the hospital he was affiliated with was doing research in the area but he didn’t really know anyone that was doing it. One thing he did mention was to make sure if I got a fecal transplant to see if being on Humira would exclude me from getting it. I was positive for this before and when I took the initial round of Dificid it went away. However, when it came back and we tried Dificid again it didn’t work. My GI then put me on Questran which worked off and on (however it does taste pretty bad!). My GI now put me on Dificid for three weeks (which is longer than the usual 10 day treatment for it). Three weeks through  my insurance only cost me $150 (the insurance company paid over $6,000 for the drug). So we shall see what happens.

Since I have not been getting better I was looking for a second opinion. The Mayo Clinic in Rochester, MN has ranked #1 by U.S. News and World Report for many years. It seems as if Mayo is highly ranked in many other fields too which makes it a great hospital. What lead to me decide on Mayo was the fact that they see hundreds of patients a year with Crohn’s disease and often treat the most difficult cases. I found Dr. Edward Loftus who has specializes in Crohn’s and Ulcerative Colitis (IBD). He has written over 170 papers on the subject. I called the Mayo Clinic to book an appointment yesterday and was surprised they had an appointment as early as next week (however it does take time to get your medical history from your GI faxed over to them). They just wanted the last 1 1/2 -2 years of GI related things as well. They also asked me some demographic information (name, date of birth, address). Mayo said to expect to stay at the clinic between 3-4 business days.

My father (who will be joining me on the trip) already booked the flight on United. I am a little nervous because the flight is on an Embrarer (smaller plane). Rochester is about 1 ½ hours from Minneapolis. I am currently checking out hotels. Most hotels in Rochester, MN offer a Mayo Clinic discount if you are a patient and I have found nearly all the hotels offer free shuttle service to the Mayo Clinic running throughout the day.

I do see a light at the end of the tunnel. Although, I feel less than okay I am not too bad. Last night I slept well (after feeling tired all this week). I still feel no were close to the same as I did when I was hospitalized or even had a flare up last May. I can’t believe it has been almost 11 months since I started Humira. Humira really is a wonder drug. I personally feel the c diff was caused by an antibiotic I took in late December which lead to diarrhea in early January. 

Stopped Questran For Crohn's: Still Having Diarrhea

So now that I have a free moment to blog I thought I would update you about my health. My health hasn’t really changed that much. I stopped Questran on April 1, 2013 (no not an April Fool’s). Questran was an interesting drug because at first it stopped the diarrhea then didn’t work then worked. The human body is utterly complex. I really haven’t noticed much change (maybe a tiny bit of more cramping/very minor pain) but I still seem to have diarrhea 3-4 times per day (some days 1-2 times others 5-6 times). I am scheduled to see my GI doctor in a couple weeks and am curious to see what he has to say. It seems odd to have diarrhea yet little to no pain with Crohn’s. I would say the worst parts of my day are early in the morning and late at night. This is when I seem to have to go most often.  I personally think I have some type of bug. Although now I am open to the possibility that it is a minor flare up. Some days I am full of energy and others just a little tired.

Right now I am considering a second opinion. Although, we would like to believe medicine is a science it really is more art than science. If I had my selection I would go to the Mayo Clinic in Minnesota. What impressed me was that they see over 5,000 inflammatory bowel disease patients per year. I e-mailed Dr. Loftus a few days ago and asked about an appointment. He told me to call the appointment scheduler and they said they could get me in maybe in April or early May. This actually surprised me because I thought it would take several months to get one. Although Mayo is the best there are some issues. One issue is how long I would have to stay in Minnesota.  Also the coordination of care might get tricky. The trip would be to figure out why I am having these symptoms. I would still want to use my primary GI physician.

My general overall health seems fine. I think I lost a little weight (1-2 lbs) but I started working out too. Everything seems to be great other than this diarrhea. Hopefully, my upcoming visit to my GI will help answer some questions.