Hey, I’m Sara! Single mother of a wonderful daughter in elementary school and work part time in dietary in a nursing home. I have been diagnosed with UC for at least 5 yrs and made my way through most all meds and currently using Remicade and prednisone and Apriso to “maintain”.
Some more about me:
I enjoy my job- working with elderly and food. Quite the combo I know, but both warm the heart! I love spending time with my family and friends. From canoeing and bon fires to dinners and movies I enjoy doing a little of it all. I also take great joy in helping others in small ways that show that I notice the small things.
I am currently in the worst flare I’ve ever had. I’ve been able to “maintain” with minor hiccups until 11/2013 and got in for a Remicade treatment on 12/05/2013 and on 12/30/2013 was hospitalized for a two unit blood transfussion, IV steroids, and fluids and was out late the next day. I am now scheduled for another Remicade treatment 01/13/2014 to see if that will help with the major swelling thats in my midsection, muscles, and moves through out my head. If this Remicade doesn’t work my Dr. said she would then hospitalize me and do IV steroids. I currently am eating hydrocodone every four hours to maintain. I am so crampy and pass blood and clots with my “5-9 in the middle of the night” bathroom trips. This does not include the multipule trips to the bathroom through out the day but the worst does seem to be between 1am and 6 am.
Right now UC has sucked the life out of me. I have not worked for over a week and will not be back to work for another week. I can not afford any of this which adds stress which we all know we should avoid stress when in a flare… :/ I am really looking for answers to questions like: Should I invest in Remicade or IV steroids at this point to get through this flare? Why has this flare lasted 3 months?!!? Would I be better off removing my colon? My Dr. is keeping tabs on me this week and doing Cdiff tests and blood work and such. I just wish things wouldn’t have gotten so out of controll almost. I can not help but feel like this could have been headed off earlier.
My family has been very supportive of me through this flare, but I see the toll its taking on my daughter and I am really at the end of my rope. My mother is great right now with understanding I need rest to let my body “try” to heal. I can see the concern on her though since she’s watched me drop 30 lbs over the last 2.5 months. I have a brother that is getting married in March and I need to be healthy and able to help out like he’s planning on me being able to. My sisters suport me in every way they can and my dad does too. I couldn’t ask for a better family!
I can not have another flare like this. I just want thoughts and feed back on anything. Really looking for information and like knowing I am not alone. I feel like I am drifting in a rocky ocean on a rotting piece of drift wood. I
written by Sara W
submitted in the colitis venting area