Biologics Reduce Crohn's Stomas by 33%

As a Crohn’s patient one thing I always wonder/worry about is whether or not I will get a stoma. New research shows that in the era of post-biologics the rate of stomas has decreased by 33%. Maurizio Coscia and his colleagues looked at 51 patients to determine who underwent a colectomy between 1995 and 2002 and then 182 patients who had abdominal surgery after 2002. 2002 is seen as the year post biologics however one could argue with this given Humira wasn’t approved for Crohn’s until 2007. Cimiza another biologic wasn’t approved until 2008. Remicade was really the only drug that was approved for use before 2002 (approved in 1998). So really you can argue that the future rates might be even lower given more entrants into the Crohn’s market. Personally I believe the new treatments for Crohn’s will be as effective as biologics with less side effects (TSO whipworms) being one of these.  

I have actually blogged about this before in a Saturday Study series. Dr. Fabrizio Michelassi did a study while he was at the University of Chicago (he is now at Cornell) and found that only 7% of patients needed a permanent stoma. The time period studied was 1970 through 1998.

With more time, surgeries performed, and research performed I believe the rate of stomas will decrease which is positive. Hopefully more novel treatments will come out in order to better treat Crohn’s and ulcerative colitis. Doctors are always remarking how they never would have imagined the current treatments for IBD. Hopefully the future will have an unexpected way of arriving. 

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. 

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. 

Fecal Transplantation for Ulcerative Colitis in Children = 67% Clinical Response

Recently in a study it was learned that a fecal transplant (also known as fecal microbial transplantation (FMT) helped pediatric patients who suffered from ulcerative colitis. Dr. Thomas Borody in Austrialia in 2003 published this paper showing that six patients who received a fecal transplant went into remission for 13 years (which to me is pretty close to a cure). As many of you now I am interested in fecal transplants and did an exhaustive study of them in this post. There were only 10 patients in the study (ages ranged from 7-20) who had mild to moderate ulcerative colitis. The patients took an enema daily for 5 days.

The good news is that 67% of patients maintained a clinical response while 78% of patients achieved a clinical response within one week. There is no question that fecal transplants may become another therapy for ulcerative colitis and possibly Crohn’s (the FDA is still trying to figure out how to regulate it). Right now the thinking is that fecal transplants would help ulcerative colitis patients more since mainly the colon and rectum are involved.  Although, I don’t suffer from ulcerative colitis I welcome anything that helps people with inflammatory bowel disease.

If patients can get over the yuck/gross/etc factor (which I think will happen once people see how effective it is for c difficile and ulcerative colitis) then doctors can start doing more of these procedures which will only get safer and more effective as time passes. Some questions still remain. What is the best way of performing the fecal transplant (colonscope, nasogastric tube, other). Also more work could be done on the fecal donor. One idea might be to do genome work on the fecal matter and then one on the individual and see which type of fecal matter would lead to the best result. Also most of these studies just look at doing fecal transplants (via enema) for a few days. Would it make sense to have it has a constant routine to see if it yields better results? As more of these studies are done these questions along with others will get answered.

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.

Questran Stops Diarrhea/Helps C Dificile?

So I haven’t been writing (due to being constantly busy for the past few weeks and months). I was able to sit for my board exam this past weekend and able to take it (10 hours for over 2 days. I only had to go to the bathroom twice the whole time which I thought was amazing for someone who had Crohn’s. So my GI put me on Questran (Cholestyramine) which at first I didn’t think would do anything but seems to have stopped my diarrhea which started January 6, 2013 (which I believe was from the antibiotic I took). It seems to have started working within a week after taking it I started the Monday before last and the past 2 days has stopped all diarrhea. Online I have read people take it and it can stop diarrhea for years. The only bad thing about the drug is that it comes in orange packets that you mix with water and don’t taste that great (although I have gotten use to it). I asked my GI if it came in pill form and he said “no but that would be very nice if it did”.  What my GI doesn't know is if this is related to the c difficile that I tested positive for or if it is a Crohn's flare up. To date I have only had one flare up and I remember what that was like (in pain all the time, not wanting to do anything, and at times throwing up). I feel nothing like this. Personally I still think the c difficile explains much of it although I am curious why Questran stopped the diarrhea.My GI called me yesterday and said to schedule an appointment within a month to see him (he believes things could still be better even though I feel fine). Having diarrhea is somewhat of a pain. I have learned to clean the toilet very well which is positive.  I thought the diarrhea would go on forever and I would need a fecal transplant however I guess that is no longer needed at this point.

I feel pretty good. Sometimes I get cramps but other than that pretty normal. I guess the other side effect is that since I no longer have diarrhea I am gaining weight which is good. The road for Crohn’s is always uncertain and I really do appreciate I am feeling great now since I know I could have a flare up any day. Although I did read somewhere if you don’t have a flare up within a year you have a pretty good chance of going a long time without one. 

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.