I am a 42 year old mother of 4 kids ages 15,13,9,and 7. I was diagnosed at 19 years old with left-sided UC. My disease starts around the top of the left side and descends about 6-8 inches. It has always been in the same spot and has never increased in size. I have moved around a lot in the past 23 years so I have had 6 GI doctors. I had to learn what works for me so that when I move, I can inform my new doctor of my previous treatments and current needs. I am currently on Humira but hope to eventually wean off when I achieve deep remission which my doctor defines as at least 6 months with no prednisone for a year.
Some more details:
I am a true soccer mom with 3 of the 4 kids heavy into the sport. My 9 yr old hates the sport so I get my fill of dance and gymnastics as well. Our family is very close and I do not hide my disease but I do not dwell on it either. I have UC but it is not who I am.
I am a Florida native and happy to be back in my home state. I love family time, hanging out with my super understanding husband, and sharing life with people. I am studying to become an ASL interpreter for the Deaf.
Symptoms at the moment:
Currently on the verge of a flare. No blood yet but cramping, dark thin stools, frequency, urgency, and no desire for a salad!
The Gift that UC Gave to Me
Whew…how to cram 23 years of UC into a short story…Well, I had it easy for 20 years that’s for sure. I quickly learned that at the very first symptom, I could “ramp up” on Asacol or in the earlier years Sulfasalize and knock it out in as little as 2 weeks. Sometimes, it would take a month and I would get frustrated. I only used prednisone about 4 times in 20 years. My first colonoscopy was done when I was 21 and the doctor did it in his office WITHOUT anesthesia. I was diagnosed at 19 from a sigmoidoscopy which was a breeze so I was not expecting the full on torture. Needless to say it was many years before I could be convinced to have another scope. Because we moved around a lot, I have had a lot of doctors. Some I loved, some I detested. When we moved to Florida again 5 years ago, I decided I would first interview my doctor before I had a flare and find the right one. I never took maintenance drugs and had 4 healthy pregna ncies so I was pretty confident in what I needed to take care of my body. I needed a partner in my treatment not a prescription writer.
About 3 years ago I was in a nasty flare and the Asacol and prednisone(40 mg) weren’t helping. Mid way though, my doctor switched me to Lialda. He explained that it was basically the same drug but in a time released form so I could take 4 pills in the morning instead of the 4 pills 4 times a day. I kept getting sicker and upped the prednisone. My body hurt and I was in the br 30+ times a day. I collapsed on the bathroom floor and we headed to the ER. I expected a few bags of IV fluids and steroids and I would be good. Well the pharmacy would only give the Lialda 1 pill/4xs a day. Mon and Tues were better but not healed. On Wed the doctor seeing me while my doctor was out of the country, insisted I drink a Boost until my nutrient bag came in. I hadn’t had solid food in almost 3 weeks and was in “starvation mode” which he attributed to my continued demise. The blood was gone but I felt rotten and sick. He insisted my labs showed I was almost in remission eve n though I had D 30+ times a day and my room smelled so bad they had moved my roommate out. I finally got all 4 Lialda in 1 dose and drank that wretched Boost. Before long the explosive feeling in my gut localized and I thought I was going to explode. My mouth tasted like poison and I kept trying to get enough energy to roll over and spit. My heart and lungs slowed to a low hum and I very clearly knew”this is what it feels like to die”. As I started to slip away, it was as if a warm presence took control. I very clearly felt this power tell me “you are not going to die. I’ve got you. It’s almost over”. My heart and lungs began to function again and I felt a power move from the top of me through my body and the volcano in my gut just dissipated.
So, it turns out I do not have the enzyme in my liver to process the time released modifier and I poisoned myself. I can never take ASA drugs again. I flared again a year or so later and ultimately had to go on Humira. I won’t be on it forever but need it for now. Ultimately though I gained acceptance of my disease and am forever grateful that I have it. It draws me close to my Creator and He centers me in my chaotic world when I trust in Him.
Currently use Humira which I hope to wean
VSL#3 DS-helpful but I get lazy & don’t always want to make a smoothie to add the powder
yoga-awesome for stress and feeling more in control of my body (need to get back to this)
Bible verses like Matthew 6:27 “Who of you by WORRYING can add a single hour to your life?”
written by Sharon from Florida