Hi. My name is Caitlin. I am 24 year old female. I was diagnosed with UC when I was 22 years old. I tried remicade, imuran, asecol, and eventually ended up on prednisone most of my illness. Starting around Christmas 2010, I was getting really bad flare ups that the prednisone wasn't taking care of. Feb 8, 2011 I went to the ER in extreme stomach pain. I was in the hospital for almost a month on high doses of IV pred that wasn't working. I was on hydromorphone IVs to ease the pain. My doctors finally sent up a surgeon who specialized in ileostomies and what not. I had never heard of the surgery so I was scared out of my mind.
Had no other option than for surgery. Feb 24, 2011 I had my entire colon removed and a j-pouch construction and ended with a colostomy bag. I was devastated and hated it, I still do. I was told I would be able to reverse it in a few months once everything healed. I left the hospital March 5, 2011 and had a very hard time at home. I was on many meds along with my big pain meds that made me out of it all the time. I was always crying and feeling sorry for myself. Fortunately, I still live at home and have the support of my family. It is probably the hardest thing I've had to deal with in my life. I'm 5'6 and normally 125lbs. I left the hospital at 96lbs. I had no energy, I could barely stand, walk, shower, or get dressed without the help of a family member. It was devastating. The end of March is when I finally went back to work on a part time basis and then in April went back full time. I went to several doctor check ups and did a pouch study and found a rectovaginal fistula where stool comes out of my vagina as well as my anus. My surgeon could barely see it on the screen and thought that it would heal on its own after takedown.
Takedown was set for May 12 and it was a success until I got home. My inner pouch was working fine besides having the leakage from the fistula. My anus was in extreme pain all the time, I could barely sit or stand and hated using the bathroom. Going to the bathroom gave me the most pain where I was in tears and debated going to the ER. I saw my doctor last Monday and he immediately admitted me into the hospital and I had the bag put back on the next morning. My butt hasn't hurt since! I came home this past Saturday morning. I'm so mad that I have to deal with the bag again but I am told that it can be reversed again once the fistula heals.
I am an emotional wreck and cry a lot of the time. I can't control it. It's not even the pain that I'm crying about it, it's me feeling sorry for myself and having flashbacks of everything I went through, all the trauma. It's very hard to consume and handle. I'm searching support groups and even therapy to do everything I can to feel better. If anyone reads this, please keep me in your prayers.