I was diagnosed with UC in 2004. I’m 33 yrs old, newly married, ready to start a family. I have a BA in Communications but I am currently working towards an Associates RN. I have worked as front office personnel in a lot of different types of medical clinics (not a GI clinic) and I find my own experience as a patient makes me empathize with people. I am a former fat kid-turned-personal trainer and I try to help others to find their own path to health and wellness.
Some more about me:
I’m an active person, so I get extremely frustrated when I’m “flaring” and I can’t do the things I want or need to do. I love to travel, which is good because we move a lot for my husband’s work–it’s bad because the stress of moving, starting new jobs, and climate changes encourage flares. Overall, I live a full life despite having UC.
Current Colitis Symptoms:
Currently I have mucous and irregular bowel movements. I just started the SCD diet (after eating bread and sugar recklessly for the last 7 months) and in just 3 days I’m seeing positive results.
Diagnosed October 2004 with Colitis:
It was October 2004 and I was in my senior year of college working towards my BA in Communications at Hawaii Pacific University, thousands of miles away from my family and my home in Columbia, Missouri. I had started working with a personal trainer because I was ready to look spectacular in a bikini, and I had quit smoking and totally changed my diet to a bodybuilding diet of egg whites, chicken, broccoli, sweet potatoes, oats, rice, protein powder and supplements. It started out as painful bloating and gas, but since I had started eating all these veggies and protein everyone told me it was normal. I started to feel flu-like, but I still went to the gym to get in my workout…and I noticed I had to stop and run to the bathroom at least 6 times during a 30 minute workout, and nothing was really coming out. My trainer noticed I wasn’t losing weight and said it was time for me to have my first “cheat day” (to rev metabolism) since I had started my diet in July! So on October 30th, I BINGED on chocolates, bread, everything I could think of that I had been craving for 4 months. I. Was. So. SICK. Again, I attributed it to my crazy binge. But it only got worse after that. I was in unbelievable pain, rocking back and forth with cramps, and I started passing nothing but black and blood and mucous. I went to the emergency room, and they took a “sample” and told me to follow up with my doctor. I couldn’t go to school or workout or barely even eat–I was nauseous. My doctor decided to refer me to a Gastroenterologist. Let me just be clear, I HAD NO IDEA what could be wrong with me, and I was starting to panic. There was no “web md” back then to give me a clue. I just had to trust the doctors. They scheduled me an endoscopy and I meekly crawled on the table…I remember how painful it was, and the doctor saying it was odd because the irritation seemed to be behind the wall of the colon instead of sores on the inside. Still meant nothing to me. A couple days later, I was laying on the couch…I had started taking my phone to the toilet with me because I was afraid I would pass out and die. I realized that I couldn’t even get up off the couch anymore to go to the bathroom because I was so weak. I called the doctor and screamed and cried “I CAN’T TAKE CARE OF MYSELF ANYMORE, DO SOMETHING!” and so they told me to come to the hospital to be admitted. With what little strength I had left, I went in my room and sobbed and threw pillows at the wall…and changed into clean pajamas and called one of my college girlfriends to drop me off at the hospital. She was talking to me, asking questions, but I was listless, only half conscious and too depressed to say much. I remember falling asleep in a wooden chair while waiting for them to admit me. I remember this lady asking me questions I could hardly answer, because I was soooo sleepy…and I barely remember being wheeled into a room and crawling onto a hospital bed. I woke up a day later. They told me I was very sick and I would be there awhile, but they still didn’t tell me what was wrong. I was on all kinds of steroids, painkillers, and a liquid diet. I kept in-touch with my Mom, and told the doctors to call her about everything. They told us that I had Ulcerative Colitis…what the f*ck is that?! Seriously? Nobody explained it, they gave me a pamphlet. They told me if I didn’t respond to the meds then I’d have to have my colon removed (they didn’t even say how). I was so relieved to not be alone on the couch and not in pain, that I didn’t even care or give it a second thought. Whatever.
My friends came to visit me, which meant everything since my family was so far away–for the first time in my life I really needed other people. Sadly, I went from being in the best shape of my life to being a bloated balloon with moon face in only 10 days. When they released me, I could hardly walk. I had NO pants I could fit into, and my boyfriend took me to Walmart to buy sweatpants that fit–I figure I probably gained 50lbs in those 10 days. The doctors would not tell me what to eat. Everybody blamed my condition on my bodybuilding diet and training, because I had been so consumed by it. I had to make a choice, believe that continuing the bodybuilding lifestyle would make me better, or blame it and go back to eating bread and sugars.
I chose to stick with it. I couldn’t eat stuff that was hard to digest, so I bought low-sodium vegetable soup and added egg whites to it. I drank gallons and gallons of water to flush out my system. The prednisone drove me crazy, when I would take it (20mg doses) I would sit on the edge of my bed, ball my hands into fists, and sob uncontrollably. I started researching night and day about UC. I found out the reason this happens is the release of adrenaline and cortisol. Adrenaline…so I started popping my prednisone at the gym and going crazy on the elliptical, funneling my tears into rage and determination. F*ck UC. I’m in charge. Luckily, my body complied (it doesn’t always).
I had built this beautiful wardrobe of Express and Banana Republic work wear that I wore to school and functions, and I couldn’t fit into any of it, but with the diet/water/exercise I was terribly proud I could fit into it again after only 3 weeks out of the hospital, a good 50lbs gone. I finished Fall semester and hurried home to my family in Missouri for Christmas break. It was SO good to be home, to have my Mother fussing over me. By the time I had to get on the plane to go back to school, I was done with the prednisone, and feeling like myself again.
When I returned, my trainer, Debbie, told me she thought it was time for me to do a competition, that it was the only way I was going to reach my “best” and see my true potential. I grappled, because I was afraid I would get sick again and it was in-arguably the worst thing that had ever happened to me, so I was perplexed at the thought of screwing myself by pushing my body too hard.
But after much deliberation, I said “YES!” and I didn’t look back. I ate only what Debbie told me. If she said “jump” I said “how high?” She pushed me ruthlessly and I fought to keep up with her demands, eating less, exercising more…and all the while I was doing my capstone course and other coursework trying to graduate–I was living life at a break-neck pace.
I graduated from HPU in May 2005, covered in lei’s, with my family watching me walk across the stage. But I was never prouder than when I stepped onstage at the NPC Hawaiian Islands competition for the first time-I did not even recognize myself in the mirror! I had nobody around me who understood exactly how hard I worked to get there, what kind of courage it took to keep going after my life was turned upside-down by UC.
I went on to do some stupid stuff with my diet/exercise after that, eating-disorder type stuff to keep my body-fat far lower than my body wanted it to be, and I’m lucky I didn’t hurt myself too badly. I now believe wholeheartedly that living a healthy lifestyle, with MODERATION, is the key to staying healthy, so I don’t advocate extreme cutting diets and exercising to the point of adrenal exhaustion. Listening to your body is SO important, since everybody is different. For those people (especially newly diagnosed) that have their “aha” moment and decide to preach to everyone that you’ve found the cure and act supremacist about not taking meds–good for you, SHUT UP. Just like religion and parenting, nobody has the right to tell others how to manage their disease.
For me, I have more trouble during seasonal changes, especially during the fall, and I find nothing helps more than getting as much sleep as possible, so that even if my symptoms are intense, I don’t actually flare and need meds.
One thing that makes me very different than most UC patients, is that I have more trouble with constipation than with frequent bm’s, even when flaring. I drink more than my fair share of coffee, and I like the effect, combined with my Asacol.
I know I am sensitive to gluten and dairy, so I should avoid them. Since I’ve been with my husband, sometimes I get too relaxed and eat whatever I want, and then regret it. So I’m going to go see and allergist and get tested, to encourage myself to stay away from foods that trigger inflammation.
I want to get pregnant and of course I’m nervous about my condition and the treatments affecting my baby. Since I’ve been on Asacol for 8 years, I feel it would be irresponsible for me to quit and expect not to be sick. I know it’s not as big of a deal during pregnancy as it is during breastfeeding. But I know myself and my husband will get through it.
My husband is supportive, and we even got married 6 months before our actual wedding because I was flaring and desperately needed health insurance, because prednisone wasn’t working and the docs were talking about putting me on Humira. We got married, and I got better and didn’t need the Humira, but I’m lucky my husband is so responsible and loyal to me. I really, really did not want to get married early, and it was one of the few times I have felt sorry for myself for having UC, because it botched my perfect wedding. I was on Prednisone until 4 months before our wedding, and I was pissed because I couldn’t work out and look like a supermodel, but I just prayed to God that I be healthy in time for the wedding. I kicked major butt those 4 months up until the wedding and felt very good going down the isle–a HEALTHY beautiful bride (April 20, 2012 in Honolulu, HI).
And then we moved to Las Vegas, and I got stressed and fell off the wagon….now, in 2013, I’m getting up, dusting myself off and using the SCD diet to get healthy again. God willing, I will complete most of my RN this year and we will be pregnant before 2014. I say CHEERS to all of you who are fighting (and winning!) your own battles with UC. Have courage. Don’t give up on your dreams when UC gets in the way–find a new path. Be kind to yourself but don’t use UC as an excuse not to live your best life. Aloha
Asacol 400mg/4 pills/2xdaily. I’ve been taking Asacol since 2004 and it helps a lot.
When I begin to flare, first line of defense is Canasa suppositories.
Second line of defense is Entocort.
Third line of defense is Prednisone.
I am not consistent about supplements but I believe fish oil and probiotics help my UC.
written by Amanda
submitted in the colitis venting area