I was diagnosed with UC in 1999 while pregnant with my son. I still had a fairly “normal” life, only flaring maybe twice a year. My first hospital stay was in the summer of 2008 because nothing else was working to get my flare under control. I remember that was a very stressful time in my life, and it’s been downhill since.
Some more about June:
I am a homebody/loner even before I was diagnosed with UC, but with the progression of this disease I have become a Hermit. I fear leaving the house or not being near a toilet, and only have contact with family. I have absolutely no social life, and feel like a horrible mother because I can’t even take my kids out for shopping, movies, the park, etc.
Currently, I am being referred to a specialist that is 3 hours away (why hasn’t teleportation been invented yet?) because my Gastroenterologist doesn’t know what to do anymore. I am in the bathroom every hour (or more) with cramping, and bloody diarrhea for a good part of my days. I seem to do better at night, until I go to bed, and then I’m up at least 3 or 4 times. I am exhausted and frustrated and I don’t know what to do anymore either.
I Hate My Guts
I am a single mother of three amazing children aged 16,14 and 3, who have had to lose out on a lot because of my UC. I have shared custody with my two eldest children’s father, and get to have them every other week. My youngest does not know her father because he left us while I was pregnant with her. I am unable to work because of my UC, and have had to move in with my parents. This has been difficult as well, because my parents want to be grandparents, and find this to be hard to do while having to step in so much when I am feeling too weak or sick.
I just want be “normal” and live my life! I want to be able to take care of my children myself, and not be a burden on anyone! I want to work a regular job, and have friends again, and be able to take my children out and do fun things! I am feeling more discouraged and hopeless with every passing day. Next week I am seeing a specialist in Orlando (3 hours away), and though I have a great fear of traveling, it has given me some hope that maybe something else can be done. I have tried all the different diets, supplements, blah- blahs and yada-yadas…NOTHING WORKS! I thought I would NEVER be able to do the Humira self-injections, but now I am(even though they don’t seem to be making any difference). I thought I’ll never be able to do surgery, but now if that’s what this new Dr. wants, then bring it! I will do anything to get my life back. To give my children the mother they deserve! I am trying to find the silver lining in all of this, and not let this disease beat me down…but if there was a scoreboard…right now, UC is winning.
I just finished a Prednisone taper, and of course without it it’s like I’m right back where I was. I know I can’t always be on the dreaded Pred, but it’s the only thing that controls the urgencies and frequencies. In the meantime, I am on 40mg Humira injections every week, 50 mg Azathioprine, Zoloft (for anxiety), and Delzicol- because my insurance won’t approve my Lialda, but because I have insurance I can no longer do Lialda patient assistance.
written by June
submitted in the colitis venting area