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. 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.