I have disease envy. I have ulcerative colitis. I was diagnosed when I was 21 years old and have lived most of the time in remission. I take my meds and get a colonoscopy every 2 years and try not to get pregnant. But right now I am having the worst flare-up I have ever had and I am angry and ashamed.
Nobody wants to talk about your colon, it's gross. I don't want to talk about it because it's embarrassing. It's not a glamorous disease. We don't get to wear pink ribbons, we don't have 3 day walks with our friends, we don't get to stay in tents and hear moving speeches. You want to see what our ribbon looks like?
Brown and Red?!! The color of shit and blood? Excuse the pun, but who was the asshole that designed this ribbon?! Thanks a lot! I will be sure to order a t-shirt right away! You fucking moron!!
July 30th I had endometrial ablation done and was prescribed some narcotics for the pain. Well if you have ever been on narcotics you know they stop up your bowels a little bit. So already I wasn't feeling too hot. Then I get this strange lump in my armpit which completely freaked me out!! Turns out to be an infected armpit hair follicle and my husband prescribes me an antibiotic to take. Well whenever anyone takes an antibiotic they put themselves at risk for c diff. If you have a fragile colon to begin with it's a huge risk. I immediately felt the effects.
I upped my meds and kept quiet, and it got worse. I went to San Diego for a week's vacation and to attend my brother's wedding. I let my husband know I was having some problems but left out most of the gory details. I started taking lots of Immodium and put on a happy face. As soon as we got home I told Erik the truth. He was not happy with me at all!! He explained to me that taking Immodium for that extended amount of time when you have ulcerative colitis can lead to toxic megacolon. Guess what the cure for toxic megacolon is? Removing your colon!
I immediately started to cry. Which means Erik stopped being mad at me because I never cry. I am so stupid, and so lucky I didn't injure myself to that extent. I made an appointment with my gastroenterologist who also read me the riot act. He changed my prescription and tested me again for c diff, so far it's negative but I am still awaiting the results from the second test. Erik and I just changed our insurance to a $2500. deductible, so the new medicine cost us $486 for a month's supply!!
Then I still didn't get better. So I finally agreed to go on a steroid called prednisone. Hit that link, read the side effects and you can see why I resisted. I get to take this for a month and then go back and see my doctor. But I am still hurting bad ,and it's a beautiful weekend and I should be taking my kids to the park, swimming, or to the gym to play with their friends. But I am honestly scared to leave the house.
I know I will get better soon, I can feel the steroid shutting down my colon like an INS raid on a factory in the Central Valley. I just want to feel better sooner than soon if you know what I mean, this has gone on long enough.
So to my local readers and friends: if you don't see me at the gym for awhile it's because I don't have the energy to work-out and the prednisone makes my legs hurt, if you see me on the computer even MORE than usual it's because I am not ready to leave the house for too long, and please don't hug me or look all sad when you see me because that will annoy the hell out of me. I will be fine, I just wish I could be more glamorous.
** 1) If you have lost family members to cancer do not read this.
2) If you get grossed out easily don't read this.
3) If you are going to feel sorry for me, don't read this.
4) If you are going to give me advice, don't read this.
I have lost family to cancer too, and it's not pretty, but this is about me and my feelings and venting. It's not about minimizing other's suffering. I have ulcerative colitis and it's gross, so don't read this while eating. My life is perfect in all other ways so don't feel sorry for me. Please, it bugs me because there are others on this planet who are way worse off. I live with a doctor, he's my husband, not my doctor, but I can still get advice if I need it. If you are going to forge ahead, thank you for listening.