It’s amazing how much the body can take…in that same breath its amazing how much the mind does not forget, yet gives you gentle reminders of the past. I truly can not remember what it feels like to be my old self…foot loose and fancy free, pain free….never concerned about what food I put in my mouth or how it would affect my digestive tract. But I do remember small details of a very difficult time in my life. I remember the smell of the hospital room, the sound of the alarms going off when the medication had finished dripping into my veins, I remember the taste of the dilaudid and saline when it got shot into my body to take the awful pain away, I remember the voices of the nurses who took care of me, I remember the loneliness….the mind-numbing loneliness of being in that hospital room.
I remember how excited everyone was that I was going home, after being there a week. I remember the greeting I got from my children and husband and how I never wanted to be away from them again. I remember being able to witness my 3rd childs’ first steps. I remember the awful night I had, every 10 minutes in the bathroom, which landed me right back in the hospital again, less than 12hrs from when I got discharged. I remember feeling completely defeated….and had no idea this was just the beginning of my fight.
I wish I could forget…
Let me back up a bit…
My name is Michelle and I have UC. I was diagnosed in Dec of 2005, one month after the birth of my (1st born)daughter. I lost 50 lbs in 4wks, trying to take care of a helpless infant when nothing you eat or drink stays in your body and all that comes out is blood. They did numerous tests couldn’t come up with anything. Finally, I went to see my families GI and he sent me for a colonoscopy. Once they knew it was UC, I was put on Asacol and Prednisone (60mg) and things seemed A LOT better!! From that point, I don’t think I took my diagnosis that seriously. I was an athlete, invincible….nothing could stop me from living my life the way I WANTED to live my life. Unfortunately, my colon had a different path for me.
From March of 2006 til the summer of 2008, I was fairly flare-free. I had my son (2nd born) in Dec 2007, with no problems. July of 2008 I got a sinus infection and bronchitis which took SEVERAL doses of antibiotics (Z-Packs) to subside. The antibiotics killed all the good bacteria in my body and I developed C-DIFF…which is an infection (similar symptoms as UC) in your colon caused by the antibiotics. Now, the C-DIFF actually sent me into a flare as well….YIPPIE! They put me on Prednisone and upped my Asacol to make the flare subside. As I tapered the Pred, I found out that I was pregnant again…SURPRISE!! So, I stopped the Pred and continued with my pregnancy (the flare subsided). In late March of ’09, I started flaring again. I was about 6 mo. pregnant. They put me back on Pred. Wasn’t working. I finally got to 8 + months and they decided they were going to take the baby out because I was losing weight and not able to keep anything in except rice and gatorade . Fortunately, he decided to come out on his own…4 weeks early (via c-section). I tapered off the Pred and seemed fine for a while.
Ok…..so that catches you up a bit. Fast forward to June of 2010. I started flaring in the beginning of June. The Pred and Asacol were not working….so on June 30th they admitted me to the hospital. One week later, I was home…bad decision. 12 hrs later I was back. I spent another 2 weeks in the hospital…the bleeding, the cramping, the pain, the sleeplessness, the lack of food, the loneliness, the boredom, the uncontrollable crying, the screaming, the feeling of completely losing control, the nurses physically restraining me so that I wouldn’t hurt myself….
I found myself waiting for the pain meds so that I could just go to sleep… I was left there. No doctor would let me leave…they just pumped me full of meds and let me wither away…I lost 40lbs in 4 wks. I started REMICADE while in the hospital. Didn’t seem to work. Finally, I somehow convinced the doctors to let me go…I couldn’t take it anymore. I came home on July 19th.
I got home, finally. My husband was my pinnacle of strength. I was not the best patient. After not eating for 4wks, crapping blood and being in so much pain…I was definitely not a wonderful patient. I couldn’t lift my children, I couldn’t climb the stairs by myself, I couldn’t eat, I couldn’t sleep…I was in hell inside my own body.
It took weeks…everyday was awful. I kept losing weight, losing muscle, losing time with my family. I felt like such a burden on everyone. Everyday the problems that I was having seemed to get worse. I prayed and prayed and prayed that things would turn around. I kept thinking that things could always be worse.
August 2010, after fighting it (and my husband) for weeks, I started SCD. A miracle happened! I started to feel better (not sure if it was the REMICADE finally taking affect, the steroid doing its job or the diet….could’ve been a combo of all). So, thus begins my road to recovery. My strength got better, my energy level increased and my attitude turned around.
Fast forward to October 2010. My visit with the “GI specialist”…. I had waited almost 3 months to see him. There was not much he told me that my regular GI hadn’t already gone over with me. He took me off the Asacol, tapered my Pred and upped my REMICADE to a double-dose. Things were looking up. my bowel seemed to be healing and getting better. I’m still on REMICADE and it seems to be working, but not for my joint pain.
Fast forward again…to January 2011. My JOINT pain was awful. I couldn’t sit on the floor, couldn’t open a jar or a door handle, I couldn’t sit for more than 10 minutes without getting up and limping for a while. I felt like a 90 year old woman, trapped in a 36 year olds body. So I went to a Rhuematologist. She told me that sometimes with UC that the inflammation can penetrate through the lining of the bowel and get into the blood stream and attack your joints. YIPPIE!!! More meds. She put me on METHOTREXATE (commonly used for Chemo-therapy patients, but also used for ppl with Rhuematoid Arthritis in low doses). Let me tell you that that drug is the DEVIL! I would take it and within 45 minutes I would be on and off the toliet for the next 3-4 hours. Plus the nausea was AWFUL. So now the doctor is switching me to Imuran…anyone have any stories about this drug? Would love to hear them….
Ok. So here I am. Its February 2010. I’m alive and ready to start my life again.
I have to thank my husband for being there for me and being so patient through such a difficult time in my life. He is my inspiration. He never gave up on me, even when I wanted to give up on myself. He always had a positive attitude, never showing me what he was going through. He stuck by me through my worst times, being so bitchy, down right mean at times. I thank you, you are truly my soul mate and I love you.
My children, for being so patient, so compassionate for being so little. They really just want to love….that’s all they know. They
do it well. I love you guys!
To my family, thank you for your support, thoughts and prayers. To my friends and neighbors, I can not even begin to tell you how much I appreciate your help this summer. Its amazing what a community can do.
Lastly, thank you ADAM for starting this web site. It has truly changed my life. I am grateful.
All the best,
Asacol Prednisone Remicade Dilaudid Methotrexate Imuran Antibiotics (Z-Packs)