My Name is Emie, not Ernie, EMIE!
I am a 29 year old wife, mother, sister, daughter, Aunt, and Shi Tzu lover. I have a wonderful life! I have the best family, great friends, and the BEST husband! I have a serious addiction to all things shopping. I have also been in a relationship with UC for about 9 years, and I’m about to call it quits.
Urgency, blood, mucus, gas, abdominal pain, bone/joint pain, tiredness, anger.
Emie’s Ready for UC Surgery Story:
My life with Ulcerative Colitis started when I was about 20 years old, after a few months of mucus and blood I finally saw a GI doctor and was diagnosed with Ulcerative Proctitis. I had never been sick enough to go to the doctor before in my life and here I am having a colonoscopy at 20. My first GI doctor was horrible and basically told me I was crazy and needed to manage my stress better. She prescribed me Canasa and referred me to a counselor, so I never went back to see her. I just kept having my prescription refilled and dealt with the symptoms.
Until I was about 23 my symptoms were not too bad, I was able to keep things in check with Canasa until that eventually gave me Pancreatitis and put me in the Hospital. I was sent to a new GI doctor, my current doc, that I totally trust and love and he started me on Asacol and Prednisone after he did a colonoscopy and saw the now I had UC.
I always feel great when I am on Prednisone, so I was able to have a normal life for a while. When I had Pancreatitis they took me off birth control because they didn’t know for sure if it was Canasa or BC that gave me Pancreatitis, I changed to a non oral BC, but let me tell you when you have UC the Nuvaring does NOT work!! At 24 I became pregnant, she wasn’t planned, but we were thrilled.
I tried Acupuncture and other natural things while pregnant, I didn’t take any medication while pregnant and was able to function ok, my daughter was born 3 weeks early at less than 6 lbs, but totally healthy. Since I had her my UC has taken control of my life. There were times when I would be changing her diaper and have to run to the bathroom and just leave her on the changing table and just pray she wouldn’t fall. I was so sick I got down to 109 lbs after I had her, that is sick, I am almost 5’8″, naturally thin, but that was too much.
I was in and out of the Hospital, having accidents at work, luckily I worked less than a mile from home so I could sneak home and back usually without anyone noticing, and the hospital is also about a mile from my house so that was convenient. Yay! Finally I called my doctor and let him know how sick I was and he started talking about surgery, Remicade, and Humira being my options which freaked me out.
So, I decided he didn’t know anything and I was going to go see a Naturopath. That lasted a couple of months, I drank some crazy stuff, had B12 injections, was given Zanax and a lot of positive inspirational words and expensive supplements but just kept getting sicker and sicker. I was probably going to the bathroom 25 times per day. We rearranged the office so I was literally two steps from the bathroom and I still couldn’t make it. I cleaned that bathroom alot.
Finally after suffering through a couple mandatory after work trainings where I thought I was going to die, and not from boredom, from pain, I decided I couldn’t do it anymore and I quit my job. I went back to my GI doctor a few days later and he put me on prednisone again. I am the BEST wife when I am on prednisone, I wasn’t working but I would get up at normal time since I couldn’t sleep anyway and make my husband breakfast, start cleaning, take care of our daughter, do every scrap of laundry, vacuum, anything I could think of.
I felt like I could pick up my house and clean under it if I wanted to!
That stuff is great, but then you have all the rage and sleeplessness and everything else that goes along with it. By this time it is probably March 2010, I started on humira injections. If you are thinking about doing Humira get it in the “pen” form, not the needle form. At my injection training, which I had to bring my daughter to because my Mom was sick and couldn’t watch her, I fainted, twice, and had to go in for observation. That was exciting. Luckily I have a friend that works at the clinic so my (hysterical) daughter went with her. Anyway Humira worked long enough for my husband and I to go Maui and celebrate him turning 30.
By the end of August actually the day before I turned 27 I started Remicade. It didn’t do anything for me at the low dose, so I started 600 mg every 6 weeks and have been on that ever since. I have felt pretty good since then, except a few of my symptoms haven’t gone away. I have been able to go back to work although only part time, I work for a much smaller company and my boss has given me my very own bathroom and is very understanding and willing to work around my flares. I had a colonoscopy in January and it showed that the Remicade is helping but not 100%. I had a Sigmoidoscopy last Thursday because my symptoms have been getting worse and the enemas and suppositories just aren’t doing anything, and it is confirmed that over the last 9 months my UC has gotten worse. I have now been referred to the UWMC to have a consultation for surgery. I am finally ok with that.
I feel like I am going to lose a part of my body but in the end get my life back, I think that is a fair trade. I am so grateful for UC, that sounds crazy, but I love my life, I appreciate my life. I know that I wouldn’t be who I am without it. I know that no matter what the people in my life, especially my husband, love me unconditionally, they will change their plans to come hang out with me in my pajamas, they will go to doctor appointments with me, they will cry with me and they will lift my spirits when I need it. They won’t judge me when I crap my pants in the car even if I just used a restroom. They don’t get mad at me for cancelling plans if I’m sick, they just love me. I want my daughter to see me not in the bathroom, I swear she must think that is my favorite room in the house.
My family and I went to Maui last December and I was able to enjoy myself, but of course the entire time I was anywhere I had to know where the bathroom was and how quickly I could get there. Maui is my peace place, the next time I go I want to be able to go all over the Island and not give a crap, hahaha, where the bathrooms are. I have tried everything, all the diets, I am allergic to eggs, wheat, and dairy so I don’t eat any bad stuff anyway. I have tried all the meds that I am willing to do, I have spent, easily, thousands on alternative treatments and supplements. I have drank things made from crustacean fish, tried the aloe stuff, tried any pill on the internet that claims to cure you, sprays, drops, you name if tried it or read the book. I’m ready to have my life back, I think this website is the greatest thing for us UC’ers. Adam you are the best!
I don’t think i would be so OK with surgery if it wasn’t for the hours I have spent reading other peoples stories, Blake, Isabel, Curtis, and Juliana for example thank you for sharing your stories everyone, you never know when you will or whose life you will change, but you have all helped me in my life and you don’t even know me, thank you. Thank you again Adam for this site, I have even referred my friends and family to it just so they better understand this disease and the surgery.
Where I’d like to be in 1 year:
In one year I would like to be all done with surgery and healed up and planning my vacation to Maui. Id like to take my daughter camping for the first time and Id like to go to dinner and a movie and not have to worry about a bathroom. Id like to be free of all medications and free of UC.
Canasa- worked good but caused Pancreatitis
Asacol-did nothing for me
Humira-worked well but not for very long
Remicade-has worked well but not 100%
Prednisone- Great but makes you crazy
Endocort (it is another steroid)-worked great with less side effects
written by Emie (not Ernie!)
and submitted in the colitis venting area