My UC Story

photo (5)Welcome to my blog!  Ulcerative colitis is an incurable auto-immune disease that affects over 1 million Americans.  Everyone has a different story. Some are willing to share and some aren’t. Which is understandable, Crohn’s and Colitis can be difficult diseases to discuss with friends, families and co-workers. Personally, I hope that my story and sharing’s about my day to day will help others who suffer from these painful, unpredictable digestive diseases.

I began feeling symptoms of gastrointestinal discomfort in April of 2012, a month after I returned from a vacation of a lifetime in the Dominican Republic. I will never forget the night the symptoms first began.  I was working as a bartender at the time which included late and long hours.  That night, I remember feeling a sharp pain in the pit of my stomach, with nausea that was impossible to ignore.

As time went on and my chronic abdominal symptoms became worse, we decided to see a local gastroenterologist. We informed him that I had been out of the country recently. After completing multiple stool samples and lab tests with no findings, I was diagnosed with ulcerative colitis after a routine colonoscopy.

I went through the entire summer of 2012 with symptoms of ulcerative colitis.  I was constantly crampy with an impending urge to go to the bathroom.  I slept little at night due to my job hours and frequent bathroom trips, and I was trying to sleep during the day.  I felt like I had no energy and my quality of life was horrible.   I remember feeling so confused and scared.  I was very uneducated as to what UC was and how much maintenance it truly required.jpouchdrawings

In September I was home visiting my family when I had a few days off work.  I had found a new Gastroenterologist who was compassionate and very knowledgeable about inflammatory bowel disease.  I was getting ready to drive back to Columbus on a Friday when my mom came home and told me that I was being directly admitted to Aultman Hospital.  I needed to go to the hospital in order to receive IV treatment for two different kinds of parasites that had went undetected for almost 6 months.

248340_10152787308540332_572693737_nWhen my doctor arrived at the hospital and told me I would be in there at least 4 days, I was in shock.  But there was hope that I would improve if the parasite was eliminated.  After my blood work and labs were drawn, I found out that I needed to have a blood transfusion as I was anemic from all of the blood loss.  I was severely malnourished and had basically no protein in my body.  During that first stay in the hospital, I had a repeat colonoscopy which demonstrated progression of my ulcerative colitis, and a blood transfusion for the first time in my life.  I had to take 4 very strong pills that made me extremely sick to kill off the parasite, and my first long term IV PICC line implanted in my main, left arm vein.  I was started on Remicade, a powerful medication used to combat inflammatory bowel disease by altering  your immune system and 6 MP, a chemotherapeutic agent and immune suppressant.   I was also on high dose steroid and TPN which is IV protein and lipid nourishment, all while dealing with the fact that I had been diagnosed with the worst cast of pan colitis that my GI doctor had seen in 25 years.

Throughout the year that followed, I did my best to cope with my severe UC.  My family and I tried everything to find relief from the pain and suffering I was experiencing because of my disease.  My father, who is a physician, even chased me around my house with an electronic cigarette and nicotine patches insisting that it would help ease my symptoms.  Though I didn’t take up smoking, I completely changed my entire lifestyle, diet, sleeping habits, everything.  I was experiencing over 15-30 bloody and extremely painful bowel movements all day and all through the night.  Every 6 weeks I would go to the hospital for my Remicade  infusion and would feel a little better, but not much.  I became severely immunodeficient due to the 6-MP, which could have easily resulted in life threatening infection, and this medication was stopped.

I experienced a short lived semi remission state for a few weeks in the winter of 2013 where my bleeding and frequency improved, but the worst was yet to come.

I began my downward spiral in the spring of 2013.  I was suddenly experiencing extreme nausea, began vomiting and was now going to the bathroom over 25-40 times daily.  The bleeding had returned. The pain was unbearable.  I couldn’t eat anything, wasn’t sleeping and the Remicade stopped working.  By May, I was completely bedridden and back in the hospital.  I was vomiting 10 times a day while going to the bathroom close to 60-70 times.  I remember sitting on the toilet and vomiting in the garbage can at the same time.

During my hospital stay, another colonoscopy was performed and showed that my colitis had not gotten much better.  I left that hospital stay after 4 days and returned home.

Upon returning home, I was the sickest I had ever been.  Because of constant blood loss, I had two more blood transfusions. I went days without eating, hiding food in the garbage and not getting out of bed.  I ended up back in the hospital for 8 more days on high dose IV steroid, TPN, double doses of Remicade, pain and nausea medicine through another PICC line, the whole 9 yards.  After my release, I was to stay on home IV nutrition every night delivered through my PICC line by my father and have home health care nurses come to my house every week to draw blood from my line.  All night I would run back and forth to the toilet, dragging a 5 pound backpack filled with liquid nutrition.  Nothing was making a difference for me and I was suffering immensely.photo 3 (1)

The final option was switching to Humira, another powerful medication delivered by painful intramuscular injections.  This medication did not help and a key test used to measure your inflammatory response, the C Reactive Protein rose to a critical level.   A normal C-reactive protein level is a .2-.4.  By the end of June my number read 95.  I was at extremely high risk of bowel perforation which could kill me.

Upon my urgent visit to meet a surgeon at the Cleveland Clinic, I never wanted to have surgery and was told that I would never have to.  I was always terrified of having an ostomy and it seemed, at the time, like the end of the world.  Arriving to that appointment, I was lucky enough to see one of the best colorectal surgeons in the country. I was stunned when he told me I was extremely ill and he wanted to remove my colon in 3 days.  He explained to me that waiting any longer was dangerous for my life.

I spent my last weekend with my colon in shock, crying, sleeping and going to the bathroom countless times.  When Monday came, I bravely went to my surgery with no tears, just hope that this operation would give me relief from my pain.

When I woke up, I felt better than I had in 2 years.  I forgot what it was like to feel good, to be able to live a normal life, without anxiety or fear of where a bathroom was or when the pain would come back.  I couldn’t eat, sleep, live.  Getting used to my ostomy was  one of the hardest things I have ever and will probably ever have to do, but it gave me my life back.  I came to terms with what was decided, I had no choices left.

I decided that I could sit and feel sorry for myself or I could try to help myself by helping others. I wanted to make the best of the time that I had with my ostomy and my surgeries. I looked at it as an opportunity to learn about myself and others. Today I can confidently say that there is nothing that I am more proud of than my ostomy.

I searched for the nearest local CCFA chapter and immediately began volunteering after my first surgery. Through the CCFA, my writing and the creation of Companion Magazine, I have healed myself and feel so healthy and happy.

Companion Magazine has had hundreds of thousands of views and I have been fortunate enough to help those who suffer with IBD all over the world. Any issue is available to read on our website by clicking here.

I completed my three step surgery process and am now currently living the most normal life I possibly can with my jpouch.  I go out with my friends, I go on dates, I work a full time job that I absolutely love with co-workers and a boss who are so supportive, interested and understanding of what I have been through. I have had a few bumps along the road, including cuffitis and iron deficiency anemia, but I know that life with my jpouch is so much better than the way I was living with ulcerative colitis.

Crohn’s and ulcerative colitis are the worst kinds of thieves.  They lie when promising medications don’t work.  They break into your body and destroy your most beloved belonging, your health.  They steal your confidence, and your ability to live a normal life.

photo (2)Ulcerative colitis stole a lot of things that I loved, friends, a job and most importantly, my health. I am no longer a victim or a prisoner of this disease. My misery has been replaced with compassion, an outlet to help others, and countless new friends that inspire me every day.

Crohn’s, colitis and having an ostomy would make it easy for anyone to want to hide in their house and fear the world.  The pain is inexplicable to those who do not have inflammatory bowel disease.  The anxiety drains you of any hope.  Your entire being is centered around a bathroom.

I have found that having a positive state of mind is the most important asset to anyone’s well-being, especially someone living with IBD. My terrible disease and suffering have made me a stronger person, even when I couldn’t get up off of the bathroom floor.

If you are negative, that state of mind will eat you alive. Live every single day like it is a gift, because it is. There is always someone who is suffering worse than you are and there are so many ways in which you can help them.

Visit Companion Magazine for IBD at companionibd.com – we are always accepting and open to positive story contributions.
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27 thoughts on “My UC Story

    • Ulcerative Colitis is 100% curable. My son had a severe case, so bad they were giving him a colostomy bag. He is 100% CURED.

      Dont believe the lie that it can not be cured. If you like contact me and I will get you in touch with the Dr that helped him.

      I am 100% legit and you CAN be cured!!

      • I think you play on the sickest of people’s irrational hopes and it makes me sad for you. IBD – I’ve suffered with Crohns for 25 years is an incurable auto immune disease and while there ate different treatments that van impact those diagnosed differently there is not a secret doc out there with the cure. AND if there is AND if this doc hasn’t shared with the community of truly suffering yet then I feel sorry for him and you for being played.

      • Hi Jenipher:

        I’m confused as to why you wrote me both a positive and a negative comment. I don’t think that your negative comment is appreciated, I don’t condone negative words or anything unsupportive to be written on this blog. I will keep you in my prayers that you find both health and happiness, but if you don’t have anything nice to say to me or to any of my followers, please do not say it on here.

  1. Hi Brooke,
    I love your blog! I’ve been doing research on IBD and I’ve found that your blog has so much great info and insight. I work for a private online company that’s creating a IBD program and we want to talk to people living with IBD to get insights on what a regular day would entail. Would you have any free time in the next couple weeks to chat with us and tell us more about living with IBD?
    Looking forward to your reply!
    Thanks,
    Lynia

    • Lynia:

      I sent you an email, but incase you don’t check that address I would be happy to talk with you. You can reach me on my cell at anytime. Just email me at my address to receive it at brkabogdan@gmail.com. Thanks again!

  2. Brooke!

    Your blog is amazing. I just wanted to let you know I am so very proud of you and your story. I think you are doing a great thing by letting everyone out there know what you are up against.

    I know we never really had a relationship but you deserve all of the encouragement in the world and are going to do great things with your life despite all of this!

    Em

  3. thanks so much for this. I have UC too. I hope you continue to feel better. Take care and keep up the good work you do with this blog.

  4. Hi Brooke 🙂

    It’s horrible reading your blog and how bad things have been for you. But it’s great to see smiling in all your pics! 🙂

    Everything you’ve written rings true; I’m trying to raise awareness as much as possible as well.

    It’s late where I am but I look forward to finding out about Companion; sounds like a great idea 🙂

    Hope everything’s going well for you!

  5. I’m at my last leg with Crohn’s disease and needed an outlet so came on here to get some of my story out. You’re blog is seriously amazing.. I have had a long fight with Crohns basically my whole life and reading this made me want to cry.. Out of joy that there’s another girl around my age, dealing with these embarrassing and painful things because no matter how much you explain people don’t understand unless they live it. I too am involved in the CCFA and have been on the board for walks in my area. I am so happy for you that you have been feeling better and continue to fight you are truly an inspiration.
    -Michelle

    • Hi Michelle!
      Thank you for all of your kind words, they are really meaningful to me. I’m glad that my blog could give you some comfort in knowing there is someone else that has suffered as you have. I know how important that is. If you ever want to talk or have questions or just want to vent, you can email me any time at brkabogdan@gmail.com! Also, I don’t know if you have yet, but I have my own magazine for people with IBD called Companion, you can read it and hopefully find someone else that understands what you’re going through at companionibd.wordpress.com. I hope to hear from you soon 🙂 Stay strong!

      Brooke

      • I will definitely keep your email at the top of my list thank you so much! I have looked into your magazine and I’m excited to look more into it. I’ve never been so interested in hearing people’s stories and getting involved in this stuff and I can tell it’s already a huge step for me. Thanks again! 🙂

  6. Hey Brooke! I’ve nominated you for The Liebster Award – it’s a cool way to give small blogs more exposure! If you want to participate, check out my blog for the details! 🙂

  7. I live with a urostomy bag and im not sure how u do it. Im depressed and cant do anything. Sometimes my depression is really bad. Cancer really can mess with a persons emotions and it sure has mine. I hate my bag and theres nothing i can do about it its there for life and i know this. I sometimes wish it made life easier but it dont not for me anyways.

    • Hi Jamie!
      I’m so sorry to hear that you’ve hit a bit of a rough patch in life. I understand not liking the ostomy, I went through quite a fit when I found out I had to have my colostomy. When I realized that there was nothing I could do about it and that life could be worse, I moved on. I had trouble with depression and anger in the beginning. I went to a therapist for quite some time. Have you ever considered? She helped me see things from an outside perspective. I also went on an anti-depressant that I LOVE called Pristiq.
      I hope that you can find peace with your ostomy soon. There are many other people in the same situation as you that will be willing to help guide you! That’s the best thing I ever did! Was find someone who could relate to my situation. I’ll keep you in my prayers. Stay tough!

  8. It was amazing to read your story. I had UC for 4 years and a year ago I had it removed. I am 15 now living with a j pouch. It is such an inspiration so see pretty women like you that have gone through something like me. It makes me feel like there is hope to feel normal. 🙂

    • Claudia:
      Thanks for reading! I’m glad that my blog could help you feel a little more normal! Congrats on being cured and living with your jpouch. YOU are beautiful and strong. Stay positive! xoxo

  9. Nice job Brooke. I’ve had Crohns for 25 years and yours is really the only second blog I can both relate to and also accept the differences in our story without feeling condescension or jealousy – i feel like I van identify with you yet still have differences. That’s all you and your keen ability to relate about difficult subjects
    SOOOOOO glad to have another GOOD blog to follow. Lucky to have found you. I admire what you do and wish you continued success, health and happiness. 💖 Jen

  10. Brooke- I’ve been seeking out blogs like this to help with my situation. Thank you, first of all! When I first started reading how you first had your symptoms of UC it sounded similar to my own situation. Sharp pain in my side, all of a sudden. Then, I read that you went to a gastro in Canton, Ohio. That’s where I go!! Well, I don’t know if its the same doctor or not, but its in Canton, Ohio. Kinda cool. Anyways, did you at all find help or relief changing diets? I dont know if its needed now because of the surgery you went through, but I was just curious if you eat, gluten free or anything now? I’ve been in a flare for the last year… it gets better, then it gets worse… Still no end in sight though… We’ll see what happens. :/

  11. Pingback: Talk About Your Medications Month-With ME! – Companion IBD

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