I have succeeded in getting two thing accomplished already this year that I have been needing to do for quite some time now and it's only January 3rd. I have finally, after two years of threatening, planning, and purchasing, achieved in scrapping the border paper off the wall in my bathroom and I am going to paint and reborder the bathroom this week. I shall post pictures when I am finished. I can't wait to see how this is going to turn out.
Secondly, I have scheduled an appointment with a new GI. Not that my current GI is bad or anything (even though he did try to kill me twice and most recently has put me through an entire ERCP procedure that did absolutely no good whatsoever). You may be asking yourself at this point why I want to see a different doctor. I have been seeing Dr. GI for 14 years after all. When I strayed before it didn't fair well for me. Well I have been doing some research and I had a very extensive discussion with my dental hygienist, of all people, the other day. Her son has Crohn's so she is very knowledgeable about new medications and treatments. I told her that the doctor hasn't been able to figure out why I have diarrhea at least 8 times a day, why I have stomach pain, nausea, and horrible joint pain. And even though I have been through every test known to man, nothing shows up except some weird blood work with my lipase levels, and fat malabsorption. I told the dental hygienist that since none of the tests showed "active" Crohn's then I can't see taking medication for Crohn's and Dr. GI never suggested maintenance medication of any kind. Then she asked me the question that made the decision clear. She said "Jenni, how's your quality of life?" That got me to thinking. The fact of the matter is it sucks. It's completely awful and has been for quite a while. About a year or so now and why have I accepted that? Because one doctor can't figure out what to do? That's stupid. I'm in control here - this is my life, my body, my disease and I want to fight it with everything that available out there to fight it with. Why should I be limited and made to feel like living with all these symptoms is normal?
There are three major gastroenterology practices in the greater metro area where I live. The first one is where Dr. GI currently practices. The second one is where Dr. GI previously practiced and where I had to fire the doctor I saw a few times when I thought Dr. GI was going to retire. The third is the practice where my nemesis in - Dr. L. Dr. L was the first GI I ever saw when I originally started having symptoms back in the early 90's. He was also the doctor that performed the sigmoidoscopy on me on my 18th birthday. He also was the doctor that misdiagnosed me, told me to take fiber pills, told me it was all stress and said I would be fine. Consequently I went about a year before even seeing another doctor (Dr. GI) and that is how the Crohn's got so out of hand to begin with. So I have limited options and limited funds and can't exactly travel cross country (as much as I would LOVE to) to find the best doctor out there. But nevertheless, I almost always have an ace up my sleeve and this time the ace is a doctor that I met a while back who is a GI, has ulcerative colitis himself, has been through two major surgeries that I know of AND just happens to be taking new patients. I have an appointment with him on January 14.
You may be wondering why I didn't see this doctor to begin with. I didn't because we were both in the same support group for Crohn's and colitis. Not that he needed support but he kind of ran the meetings and had the connections with CCFA. I did various volunteer work for the support group and it just felt like that would be a bit awkward if I became his patient too. Kind of a conflict of interest. Plus I was already seeing Dr. GI.
This new doctor though is in the same practice as the dreaded Dr. L and that doesn't make me very happy. However, since I am taking some serious charge of my medical care this year and deciding not to accept the run around from doctors anymore and being more aware of my patient bill of rights (I had to learn that for school) I now know that I don't have to allow him to treat me for any reason. Unless I am dying in the hospital and he is the only one on call and the janitor is unavailable Dr. L will not be touching me.
I don't relish the thought of being on medicine and I especially do NOT want to go down the route of steroids again but I also don't relish in the fact that I won't be able to take care of my patients during clinicals because I have to stop and poop every 20 minutes. I don't want to spend my spare time clinging to the heating pad and drinking chicken soup because I'm in pain and can't tolerate real food. There has to be a better life than this for me - right? I realize every day won't be a bed of roses and I will have really bad spells but it shouldn't be every day - right? Every day for over a year? Pooping upwards of 10 times a day can't be 'normal' and being in pain all the time can't be 'normal'. Not even for a person with Crohn's. Can it? Certainly not if there is no "active" disease.
So pretty soon I get a new bathroom and a hopefully if all works out well a new doctor. This could be a better year after all.