This is the letter that I wrote to my new gastro specialist. I include it here only as a record of where I was at during this stage of my life.
August 3rd, 2008
I'd like to start with some quick history of my situation. I'm a 29 year old male and in January of 2007 I had a colectomy in response to several hospitalizations for ulcerative colitis. Two weeks later I had an intestinal blockage that required an NG tube to reverse. February of 2007 I had an abscess, and had an additional abdominal surgery to correct. April of 2007 I had stoma tear down surgery and began the long recovery process. Almost immediately after my last surgery I was treated for pouchitis with both Cipro and Flagyl.
Fast forward to August of 2008 almost eighteen months since my last surgery and I am still struggling on a daily basis. I've seen my primary care physician, my original gastroenterologist, a hematologist, and Karen Deveney throughout this whole process. I feel like (until recently) my symptoms were not taken seriously and everyone was waiting for my body to heal naturally. I feel I was bounced around between my doctors as no one knew exactly why my body was not responding like it should. It was not until very recently that I have had some more significant tests done, and received some more attention. It's been a really long year, extremely exhausting both physically and emotionally. There have been several occasions that I've contemplated checking myself into the hospital to get several days of pain medication and rest.
My abdominal problems have affected my ability to work, to be a father, to be a husband, and to maintain any semblance of a normal life. Lingering effects of my abdominal problems have left me unable to do many “normal” things like: walk a mile, sleep eight hours straight, sleep on anything except my back, stand up for more than ten minutes, ride my bike, leave my house for any extended period of time, or eat greasy food. During an average night I'll wake up about four times with either with stomach cramps, or a sense of urgency. In the eighteen months since surgery I have had only two major vacations, both only two days long, and both very difficult. Often simple tasks like shopping, watching my two year old son while my wife works, or mowing my lawn prove to be too much and require outside assistance. For a young man, and a young father these are very hard things to accept.
Recently I have been diagnosed as being anemic to the point that my hematologist has given me two iron infusions. Follow up blood test results have been inconclusive due to abdominal inflammation. I also have had a negative reaction to Cipro that caused my Achilles tendons to become extremely sore, and gave me crippling IBD related arthritis for almost three weeks. I seem to be resistant to standard pouchitis treatments as most of the medications (see attached list) prescribed have little or no effect. The only medications that seem to have any effect on my quality of life are Hydromorphone for controlling cramping, and to a lesser extent Hyocyamine combined with Lomotil. I've taken a lot of medications, and few have any noticeable affects. I'm concerned about the amount of Hydromorphone (2 to 4mg a day) I have to take to maintain any semblance of functionality in my life.
I have had abdominal x-rays (of the small bowel and pouch) and a biopsy done of the pouch tissue. The abdominal x-rays did not show much, and the biopsy results are not back yet. I am at the point in my life that we need to start making some serious decisions so that I can get my life back on track. I am open to anything that can improve my quality of life! I have been miserable the better part of the last eighteen months and I do not know how much longer I can do it. My wife is four months pregnant and I do not know if I will be physically capable of handling a second child if things continue they way they are.
I feel like I have very little control over my life, and my health. I'm constantly trying new medications and waiting another six weeks for my next follow up. Specialists like you and Karen are extremely hard to get appointments with. I'd like to establish more consistent and ongoing follow up. I'd also like to establish a long term plan to address my quality of life concerns. Can you work with me to establish these things? Do you feel you are the appropriate doctor for this?