I have been dealing with chronic diarrhea for months, most likely due to my liver and pancreatic duct dilation. This week I noticed my stools are now orange in color. Nothing I eat will digest properly, including a bland diet. My doctor has ordered more tests. I am exhausted from cleaning my bathroom. I keep a large container of vinegar in my vanity, and last night had 8 episodes of diarrhea. Forgive me for being so forthright.
I am due to see a liver specialist on March 7 2023 and will ask her if my ulcerative colitis has returned, which I understand can sometimes happen. I am feeling very anxious about my disease and subsequent weight loss, as well as other changes that have occurred in my life because I have lost 25 percent of my body weight. While I have gotten used to the "new me", I still cannot get over the fact that so many in my community continue to shun me as though I have the plague.
Friendships have also changed, and this week I received a letter from a very close college friend who flat out told me that she did not think that I understood that she had a demanding job and does not have the time to write letters to me. For many years we had this great letter writing back and forth, and it ended abruptly. I am trying to decide if her letter even warrants a response. Of course I know she works and is "living a full life" as she described to me. I too had a demanding job until I did not.
Someone recently mentioned to me that friendships change when one has a chronic illness, something I never gave any thought to until I became so sick and emaciated looking. I commented to my eye doctor's assistant yesterday that it seemed our world is so lacking in basic humanity, a characteristic I have always been proud of having.
I am dismayed at the medical treatment, or lack thereof, that I have received to date. I sent an online message to my PCP a few weeks ago that I was feeling hopeless and depressed as a result of my illness and asked if he thought increasing my antidepressant would be of help. He did not respond. I have to see him next week and will ask what the purpose of the online message system is if a patient cannot get a response from their doctor.
I understand that my condition(s) are complicated, after all it has taken 3 years to finally get an appointment with a liver specialist, even though I had been told one would never see me. I apologize if I sound like I am whining, perhaps I am simply frustrated at just how difficult it is to receive the appropriate medical treatment these days. I try to remain positive, active, engaged in creative activities and things of that nature. I am not curled up in a ball in some kind of catatonic state. All I want is help from my medical team, and it has become such a struggle to get the treatment I think I need. Yes, I have a friend who is a doctor and who has been very helpful by telling me what tests my PCP needs to order, and when I ask him to order such tests he does. but really, how crazy is that? This forum and my disease have enabled me to become more empowered, however I had no idea that getting the right treatment, if any, would be such a struggle. I have good coping skills, but in all honesty there are days when I really do feel like curling up in a ball, but I don't because I am afraid I would remain in that state. So instead I take walks, work on my artwork, bake bread for my neighbors, care for my 84 year old friend etc. I am constantly on the move. Right now, I just want to step off and rest.