My name is Christine. I am 43 and have had UC for over a decade. I am feeling great right now. I have a very active life and enjoy everything. I work with Cancer patients. At the current time I am in remission from this awful disease.
Some more about me:
I live in Suffolk County, N.Y. My passion is reading. I also love to cook and exercise when possible. I found myself working with Radiation Oncology patients in a Cancer Center. Our motto as stated by one of my patients is “hope lives here”. Sometimes it is hard to be optimistic when you are watching people suffer day in and day out, however, I find a hug or a smile or just lending my ears to listen to stories goes a long way for someone who is fight for their life. I love amusement parks and aquariums. I love the beach and I love hiking in the mountains. Horseback riding tops my list. I can cook (I try). I was raised by an Italian grandmother. Cheese cake anyone?
Symptoms right now:
I am in remission and currently feeling great.
Remission is a Definite Wonderful
I was diagnosed with Ulcerative Colitis eleven years ago.
In my twenties I suffered family tragedy after tragedy. One cousin was murdered brutally. My dad fell ill and after a battle with Hepatitis C and liver failure and passed away. I married a man who I was in love with but he suffered terrible Alcoholism and every day was a battle to get him off the floor. The last trauma was my first cousin on the same side of the family committed suicide on Christmas Eve of 2000. To say the least stress played a factor in my early onset and sudden onset of symptoms. I was sick with anxiety.
My symptoms started in my late twenties which include severe urgency and mucous. After my first pregnancy, with a newborn I was completely unable to control bowel function. I visited several doctors all telling me I had a “syndrome”. One doctor removed my gallbladder, another gave me a diet to follow. Horrible experience.
Finally one fine day I changed my primary care physician who recommended me to a wonderful doctor who performed a colonoscopy. I literally heard the angels singing and the trumpets blaring. This man not only ordered a colonoscopy but sat with me to get a full family history, all my symptoms and what my current diet was at the time.
My colonoscopy showed moderate to severe inflammation in my large intestine. The next chapter … finding the right medications. Trial and error and years and years of trying different medications. Having severe urgency and living with four other people.. not fun. I found myself running and sitting on the garbage pail in a closet more then once.
Standing in a store inline for groceries and ahhhh.. running through the store knowing the inevitable is coming. Sitting through parent teacher conferences is not so much fun. I would say my worst experience was walking with my son in his stroller on a beautiful day. I felt great and had on pretty white pants and a blue shirt. We strolled and strolled. A ll of a sudden to my dismay, not even realizing I had to go, and it was coming out all over my pants. I was in the grocery store parking lot and rushed into the bathroom. There was not towels, or soap and only a hand dryer with a bottle of Clorox bleach on the floor. Now what is a girl to do. I took my heart in my hands and walked out as quickly as possible and walked home crying all the way. Now as you can imagine.. that didn’t draw too much attention. What a horrible experience.
I started on Sulfasalazine and that made my hair fall out and a severe rash developed.
They next tried Prednisone. I went from 125 pound to almost 165 pounds on my first round. Each taper caused me to flare over again to only restart the Prednisone.
My next trial of medication was 6 Mecaptopurine or rather 6 MP. One day I woke up feeling like I had to vomit and vomit I did. The most green bile came up and it was gross. I called an ambulance and off I was with another allergic reaction. This hospitalization was the worst. That medication caused severe acute pancreatitis. Nothing to eat or drink for almost 5 to 6 days.
Well, next came Remicade. I loved it. However, it did not love me. I again had a reaction where my antibodies were attacking my white blood cells. This lead me to my current medication which is Humira. I am in remission and not thinking about the possible side effects of that medication at this time. I am able to enjoy life where before I could not even get off the toilet bowl.
I have a warning to all who read my story. I started to feel really good. Almost forgot I was sick. I was told that adding fruits and vegetables to my diet were fine. I enjoyed them and was still not suffering any bowl distress. However, feeling frustrated with my weight, I decided to juice diet and low and behold.. I fell out of remission. Yes, it was dumb on my part. However, thanks to a very understanding GI doctor, she prescribed Aprisol and Uceris. I was told that Uceris was a new drug approved for UC patients as of March 2013. Well 3 weeks in and taking Aprisol and Uceris I felt sick like a dog. I was jumping and running out of bed to get to the toilet. I stopped eating and just had liquids. Then a miracle occurred. An elderly family member passed away of natural causes and on the day of her funeral I took the Uceris but forgot to take Aprisol. It was only a matter of hours before I realized I was feeling better. I did not yet realize that I was allergic to Aprisol.
On day two of the funeral and being away I again took my Uceris. The Aprisol was home and thank god it was because I was having a severe reaction to it. I finished the Uceris and have been in complete remission since. Ok.. I did gain more weight on top of it all. I am a whopping 185 for a female at 5’5, not so good. I’m not sure if my weight gain was the medication or my emotional eating. So to leave off on a happy note.. I am feeling wonderful and have started to watch the sweets. I feel I am sweet enough, lol. I hope everyone has a chance at remission. It is wonderful to live a normal life. My current medication… Humira 40mg pen once a week.
written by Christine
submitted in the colitis venting area