Well, it has been nearly a year since I was first diagnosed with UC. I wanted to give everyone an update on how things have been going to hopefully encourage everyone who is currently suffering through this confusing, painful and sometimes even embarrassing disease (Pooping on the side of a road? YEP! Totally did that.).
If you don’t know my diagnosis story (and want to know it), read my post from last year found at this link: https://www.ihaveuc.com/happy-valentines-day-you-have-ulcerative-colitis/
Since my post, I have been through MORE ups and downs. The medications I was on at the time were not working and everytime I began tapering the Prednisone, the blood got worse and worse. I kept calling my doctor who seemed to be unconcerned about the fact that I might actually be bleeding to death… She rarely called me back and kept telling me my only other option was Remicade. Many of you know that this medication has some potentially dangerous side-effects.
Seeing how I had only tried TWO other medications (Balsalazide and Imuran), I thought it was ridiculous to say that Remicade was my only other option. So did my boyfriend’s parents. They immediately searched the internet and found a GI group who were only 2 miles down the road from where I worked. I didn’t like having to go see yet another doctor, but I did it anyway.
The new doctor told me that I definitely had UC and that Remicade was DEFINITELY NOT my only other option. He immediately prescribed Mesalamine Enemas and told me that he wanted to do some stool samples… I’m thinking, “Does this madness EVER end???” He also wanted to bump up the Prednisone dose one more time and do a quicker taper.
That week after the results came back from the samples, he prescribed an antibiotic to kill the C. Diff that developed in my colon (he said THIS was why I was still bleeding). By the end of the week, there was definite improvement. My poop wasn’t solid like I wanted, but there was no blood either! Eureka!
Things were starting to turn around. My only problem now was the Prednisone withdrawals… cue more frustration. I started breaking out in acne all over, my cheeks swoll up like a hamster, and my joints were painful and swollen as well (there goes my karate class). Not only was there a lot of physical stress, but I was also at times an emotional monster… this is where my poor boyfriend suffered. I was cranky and irritable with him. It didn’t help that he was three hours away either. At times, he did get fed up with it… but he stuck with me, knowing that this wasn’t going to last forever.
I am so thankful for him and my friends. There were nights that we thought I might have to go to the emergency room, due to Imuran side-effects and blood loss. Dave drove THREE hours during the night TWICE to make sure I was going to be ok. In June, I quit my job and moved to the same city as Dave and began working at the same company. My digestive system slowly started acting normal!
In August, we drove to Tennessee for my birthday (his parents have a cabin there). While we were there, my colon rebelled. Diarrhea and bleeding started all over again. Dave was beside himself with frustration. I was too. Why did my colon have to go ballistic on me again? As it turns out, Dave was more frustrated with the fact that I was in bed for most of the trip, thereby delaying some big plans that I had no clue about.
After being in bed for two days, afraid to move, I sucked it up and told Dave that I was NOT going to allow this disease to control me. That afternoon after a cleverly planned out treasure hunt, he proposed. I, of course, said yes.
I had a checkup with my GI. My blood levels had returned to normal (I am no longer anemic and my inflammation levels are normal!). We married in October. I haven’t had much problems with my colon since then. My poop is solid more often than not and I RARELY see blood. There are times where things go out of whack… but that’s due to the fact that I am STILL learning what I can and can’t eat.
Why did I post such a painfully long update? Because I want to inspire everyone out there who is still suffering!
Things can and WILL get better.
I didn’t think so at the time, but I am living proof that this disease can be overcome. If I could give anyone any advice, I’d tell them to keep a positive attitude, get a second opinion and have faith that you WILL get through this.
My next goal in life, is to pick back up on my karate training… hopefully by next year, I’ll become a black belt!