WEEK 4 - "Some people think that to be strong is never to feel pain. In reality, the strongest people are the ones who feel it, understand it, and accept it."

Week 4 started with a visit to Barnes Hospital and Medical Center in St. Louis, MO.  I am the "plus one" for my Crohn's case study.  He is a single male with little/no medical background.  It can be very confusing to go to the doctors' office and not have someone there with you...especially if you are getting a lot of anatomy and physiology based information thrown at you very quickly and it is emotional to hear the results.  I always recommend that patients go to the doctor's office with a close friend or family member who can take notes, help ask important questions and discuss the results with the person following the appointment.  It makes for a much more effective and enjoyable visit.  To give you a little background, below are the notes from our visit three months prior to this visit.  He originally visited the doctor because he has an ostomy bag and there was a periostimal hernia that was presenting and causing him to be on a 20lb weight restriction with respect to lifting.  It was impacting his lifestyle and his job.  Below are the notes from our first visit to Barnes together in June.  They will shed a little insight into what we had discussed as well as what we hoped may happen.  




NOTES FROM THE VISIT IN EARLY JUNE:  

Let me know if there is anything else I can help with. Things to keep in mind... The small intestine is also called the small bowel and contains three sections: the duodenum, jejunum and ileum.  Most of the digestion and absorption of nutrients occurs in this location in the body.  The large intestine is also called the large bowel and contains the cecum, ascending colon, transverse colon, descending colon, sigmoid colon and rectum.  The natural ending to the large intestine is out the anus.

PAST SURGERIES:

• The first surgery was a Sticturplasty (http://emedicine.medscape.com/article/1893397-overview) and was done on many sections.  The doctor seemed to indicate 5+ sections on the small intestine were affected and surgery was done on them.  It was also indicated that they now know that it was likely not the best solution...but, it was the best solution the medical community had at the time.
• The second surgery was a resection of the small intestine.  They took out the section of the small intestine that previously had the strictureplasty.  It sounded like several feet of small intestine were removed at that time.  I do not recall which portion of the small intestine was removed.
• The third major surgery was primarily to create the ostomy (the bag).  http://www.ostomy.org/ostomy_info/whatis.shtml

(the image to the left is a model who has Crohn's and lives with an ostomy bag)

Currently, the individuals at Barnes would like to "start from scratch" and determine what is going on with both the hernia and the Crohn's disease.  To do so, blood work must be done to look at metabolites to see if the Imuran (http://www.rxlist.com/imuran-drug.htm) is at the correct dosage.  It looks like the Imuran dosage that was initially prescribed could be as low as 1/3 of what is needed to keep the Crohn's disease in check.  They would also like to do an MRE (a special MRI looking at the intestine specifically - http://www.hopkinsmedicine.org/healthlibrary/test_procedures/gastroenterology/mr_enterography_135,61/) September 3rd to see if where the end of the small intestine (traditionally the ileum) meets the large intestine has inflammation or if it is just a funky angle.  There is a little concern as the last time a scope was used to see what was going on, it couldn't easily pass that intersection.  Both the blood work and MRE will allow the team at Barnes to determine when the hernia surgery can take place.  It looks like with a combination of the Imuran and Remicaid (http://www.monmouthgastro.com/procedures/remicaid-infusions.php) that the Crohn's will be under control by September at the earliest and they hope November at the latest.  After the MRE in September, Dr Shaker, a colorectal surgeon, will meet with you to go over the results and prescribe the next course of action. Surgery will not take place that day.  But, it could be scheduled soon thereafter.  

We are waiting on 6 vials of blood to be successfully drawn to get baseline blood values.  Once that blood is drawn it will take 7-10 days to get results for the metabolites.  

RESTRICTIONS:  Unfortunately, the 20lb weight restriction remains in place at work and home until the hernia surgery and healing has take place.  

Additionally, with the increased Imuran dosage, blood work will need to be done on a monthly basis to check for liver function. 

After following all of the doctors' orders from June, my Crohn's case study and I returned to Barnes on September 2nd.  We needed to find out if the Crohn's was under control and if it was under control we anticipated that we may be able to schedule surgery. Unfortunately, our results were less than desirable.  We found out that the Crohn's is not under control and that the inflammation from the Crohn's may be causing more strictures in the colon.  It was suggested   to proceed with an increase in medicine to attempt to better control the disease.  It was also discussed that once the Crohn's is under control that he may need a surgery to remove any problematic fibrotic strictures in the colon that could cause blockages in the future.  The doctors stated that they are concerned about doing the hernia surgery due to the massive amount of scar tissue from the above surgeries...they would like to focus on getting the Crohn's under control prior to even discussing if the hernia surgery will be an option.  It looks like we will continue to adhere to doctor's orders and wait to see where to go from here.  
________________

THINGS I HAVE LEARNED ABOUT CROHN'S THROUGH THIS PROCESS:

• The disease is not as responsive to diet as I had hoped it would be (that doesn't mean that we are giving up on the juicing and healthier dietary choices)
•  Stress is a major trigger for this disease (and many others!).  It is horrible what stress can do to the body.  
• Medicine for treatment of Crohn's is relatively new and is VERY expensive if insurance covers it.  If insurance does not cover it, a family can be thrown into financial duress!