Hello everyone, My name is Sandra and I will be 22 in a couple of months. Since I was a baby I was lactose-Intolerant. In 2010, I was diagnosed with UC right after my high school graduation. I’ve had several colonoscopies and hospital stays since then. Safe to say, these past three years have been quite the roller coaster ride.
Some more about Sandra:
I am from Ontario, Canada. I am currently in school for Special Events Planning. I wish to be a Certified Meetings Planner. I love organizing events and finalizing details. I’m sort of a perfectionist. I am detail oriented and tend to worry way too much.
In 2012 I received my diploma for Baking and Pastry Arts Management. I am now finishing my Special Events Planning diploma program, and am working towards becoming a Certified Meeting Planner.
I love spending the time with my family, relaxing at home and playing board games. I also love baking, shopping, and cuddling with my dog.
I’ve been having flare ups since April 2012. Currently, I am experiencing mucus and some blood.
UC Roller Coaster Ride
Before I was diagnosed, I was like any normal teenager. I thought I was invincible. I hung out with friends often, partied, and ate a bunch of junk.
It was nearing the end of my grade 12 year that I noticed some symptoms. Mucus was the first. I had it for a few months and didn’t tell anyone. I was nervous, but did not like to admit when something was wrong.
It got worse during the summer after my high school graduation. I was bedridden. I was bleeding, barely ate, went to the bathroom 20+ a day, could not sleep. I had a colonoscopy done and was just waiting for the diagnoses so I could get my medication. That summer was hard, my friends didn’t understand what I was going through. All they wanted to do was hang out. My family, felt helpless. I hated seeing the look in their eyes of wanted to help but not being able to, I still hate it to this day.
I was put on Salofalk, and started to see an improvement. I eventually had to reach the max. dosage to keep in remission. I was able to start my baking and pastry arts program in remission, and finished it two years later with not one flare.
It was near the end of this program that I met the love of my life. We use to go to high school together, but did not speak until after high school. I don’t think I’d be as strong as I am now with out him.
It was soon after that my doctor decided it would be a good idea to decrease my dosage of salofalk. I started flaring up. He increased it back, but I was still flaring. So I was put on prednisone. I read all the bad reviews of the drug, but thought those people were crazy. The prednisone worked wonders for me. I did not get any bad symptoms like moon face, weight gain, joint pain.
Of course, that was only during the beginning of my prednisone journey. I’ve now been on prednisone for over a year now. And I finally got the full affect of its symptoms. My face swelled up and had acne everywhere. It even became infected, with white puss all over. I gained 15 pounds in two weeks which resulted in delightful stretch marks, yay. My knees started to hurt from bending down.
During this time I was researching diets to help with UC. I came across the SCD and tried it strictly for 6 months. My family was a huge help with this. They even adjusted their diet to support me. I felt healthier, but I was getting worse. I was losing too much weight and decided to start eating carbs again.
Every time I tapper down on prednisone, I flare up. The plan was to put me on Immuran, but remission just wasn’t in my agenda. I was hospitalized in May and then again in June. I was then introduced to Remicade, also known as the miracle drug. My doctor said that it would put me in remission, and that when I’m almost tappered off the prednisone I would start the Immuran. I got my first dosage of Remicade in June while I was at the hospital. After a couple of weeks I felt better than ever. I don’t remember the last time I took a solid poop! I felt good. Of course, during exam time it got worse again. I was hospitalized again in December. My Remicade dosage was doubled, and my treatment periods were shortened.
It has been 3 weeks since my last Remicade infusion, and I am already starting to see symptoms, mucus and some blood. I am considering surgery, because I just want this to be over. I am suppose to go on a scholarship trip in a couple of weeks, I don’t even know if I’ll be able to make it. UC has definitely changed my life. I hate having to revolve my schedule around it. I’ve had to cancel many plans, and put several things on hold because I could not stress myself and aggravate my colon even more.
My doctor wants to try everything before surgery. How much longer do I have to put my life on hold to find something that works? Everyone is finishing school now and starting their careers. Some are even starting their families. I am the type of person who worries way too much, wants everything to be organized and detail oriented. The career field I would love to go into is stress oriented. Am I suppose to not do what I love because of my disease? Or should I get the surgery so I can finally start my life.
Either way, I’m scared. I don’t tell my family because I hate that look I get. My boyfriend says he will back me up with any route I go.
What decision is the right decision?
Medications / Supplements:
Salofalk: Was great until my dosage was decreased
Prednisone: Perfect for a fast fix, but get off of it ASAP!
Remicade: Miracle drug, as long as it keeps working for you.
Immuran: No idea, haven’t been able to start it as yet.
Surgery: Any advice?
written by Sandra D
submitted in the colitis venting area