22 Years Old and Facing Surgery

Kourtney 22 years old facing surgery

here I am!

Meet Kourtney:

I am a 22 year old PhD student who has lived with UC since the age of 16. My original diagnosis was proctitis, but very recently it has spread to pancolitis.

Some more about me:

I study Russian language and literature and I absolutely love it! I’ve finally found the thing I’d like to dedicate my life to studying, and I’ll be damned if I get my UC get in the way of achieving my goals.

Current Colitis Symptoms I’m Dealing with:

Urgency, cramping, tenesmus, a tender abdomen, as well as arthritis in my knees.

22 Years Old and Facing Surgery

What has really fueled the idea to write this entry was my decision to have my colon removed. It is not something I have taken lightly (as no surgery should be!), and I have to admit that I am extremely afraid of what the future will bring. It’s terrifying to imagine that just one decision like this has the power to change your life forever.

My surgery date is January 22nd. After then, I plan on sharing stories of what happened in detail, and I’ll be sure to include photographs along the way. But to begin with what has led me to this point, I’ll give a brief history of my life from my diagnosis up until now:

I was 16 when I experienced my first Ulcerative Colitis symptoms, which, to my knowledge, were triggered because I began to eat meat again after being a vegetarian for 2 years. My first symptoms were constipation and tenesmus. At first, I attributed this to the fact that my body wasn’t used to digesting meat. But as days went by, I noticed a new and scarier symptom: blood. After visiting my doctor, many weeks of giving stool samples to check for viruses, parasites, and bacterial infections, I was finally referred to a gastroenterologist. My first colonoscopy revealed that I had ulcerative proctitis, or ulcerative colitis of the rectum.

Although I was relieved to finally know what was wrong with me, I was scared to discover that this disease was chronic. Being that there is no cure, I had to come to terms with the fact that I would inevitably have to deal with flare-ups for the rest of my life. But the good news was that I had the most mild form of UC!

After about 8 months of experimenting with Rowasa (or mesalamine) enemas, hydrocortisone enemas, suppositories, and Asacol, I landed in the hospital for two weeks. My symptoms quickly spiraled out of control from several bloody bowel movements a day, to over 25. Anything I ate made me so ill I quit eating altogether.

While in the hospital I was pumped full of IV steroids, took hydrocortisone enemas, and began a dose of 50mg of 6-MP a day. I was finally able to taper off of prednisone, and with the help of 6-MP, was able to stay in remission for almost 3 years. But due to a variety of circumstances (like the fact that I had moved to another city for college and didn’t have a GI there, as well as the fact that I didn’t like the risks that 6-MP posed), I decided that I would try going off of 6-MP. I was fine medication-free for the last year of my 3 year stretch, but shortly I found myself facing another flare. I panicked. All of the bad memories from my awful flare that essentially ruined my senior year of high school came flooding back. I made an appointment with a new GI, but he was atrocious. He didn’t even ask to look at my medical records or do a colonoscopy. For all he knew, I could’ve been making the whole thing up. He asked what my previous doctor had prescribed me, wrote me a prescription for 50mg of 6-MP a day (good for 50 refills!), and sent me home. Not to mention, he said no word of the fact that 6-MP requires blood samples to check for potential liver or pancreas failure!

I decided that I would try my own route to battle this flare. Things were still very mild, and miraculously I got myself into remission by taking the probiotic Align and following a strict diet.

I remained in remission for another year before having another flare.

This one began in January 2012. I thought I would be able to control things like last time, but I quickly discovered that things were way worse than I could’ve imagined. I tried everything — VSL #3 strong probiotics, Align, and then later in summer I tried the specific carbohydrate diet. Nothing worked. Desperation led me to call my awful doctor, and he prescribed Lialda this time. To make a very long and painful story short, I ended up having a vicious allergic reaction to it (involving 10x the amount of blood I was seeing before, 25+ BMs a day, etc.)

This flare (which I am still in) was the worst of my life. I moved to another state for graduate school and soon found a GI (who I actually liked!) A colonoscopy revealed that my former proctitis had spread now to my entire colon. I decided that Remicade would be the best option (since 6-MP takes months to build up in your system.) During the weeks I waited for the insurance to process the request for Remicade, I was on my death bed. I couldn’t even drink water without having to run to the bathroom. I just prayed that I could survive long enough to get the Remicade and continue with life.

I’ve since been on Remicade, which has helped me immensely, but not enough to where I feel like a normal person. Because of this I’ve decided to go through with the surgery.

This wonderful website has helped me so much with coming to terms with everything that is about to happen, and I hope that my story can potentially help someone as well. I’ll be creating my own blog to chronicle my experiences with the surgery in more detail, and will add a link to it with my other post about post-surgery life to this site.

Colitis Medications I’ve Tried:

- Immunosuppressants (like 6-MP and Remicade) have helped me the most over the years.
- Anything with mesalamine made my blood output 100x times worse, and I’m fairly certain that I am allergic to it. I’ve tried Canasa, Rowasa, and Lialda.
- Prednisone, and most steroids in general, were awful for me. I experienced bad mood swings, painful joints and bones (I felt like I had the body of a 90 year old), and moon face. The only steroid that was tolerable for me was Entocort, which is a slow-release steroid that is meant to release in your intestine. Even hydrocortisone enemas made me experience the bad symptoms that are associated with steroid use.

written by Kourtney

submitted in the colitis venting area





8 Responses to “22 Years Old and Facing Surgery”

  1. SharonJanuary 23, 2013 at 7:38 am #

    Hi I am very touched with your store and yet I am not a UC patient but I been with my husband since he has his flare so I knew exactly what is it like since I live with one.
    I wish you the best luck and looking forward to your story after the surgery
    Truly hope you will be able to cope well after the surgery and get back to normal life again!

  2. Princess PPJanuary 23, 2013 at 2:54 pm #

    Wow, your story is similar to mine. First UP, then Pancolitis. I had two mega flares last year that landed me in the hospital both times – I spent almost a month there each time. My doctor didn’t want me to leave without having surgery but I felt I hadn’t given Remicade a chance. I added Imuran and it took me an entire year to get to a clinical remission. That meant I could function but I still have some issues. I wish you the best of luck and I look forward to reading about your experience with surgery.

  3. bevJanuary 23, 2013 at 3:38 pm #

    I commend you, Kourtney, in your decision to forego any more of the awful poisonous drugs that are used to treat UC, and for deciding on the surgery.

    I too have pancolitis, which started out 15 years ago as ‘just’ proctitis…which was not supposed to spread. I think all of the drugs…especially asacol (mesalamine) actually are what worsened the disease. I believe this disease is over-treated, therefore killing any chance of healing the colon. The drugs used are so harsh, that they just seem to ‘ruin’ us.

    I am currrently in remission on no meds…went off them on my own because the mesalamine made things so much worse…just probiotics and L-glutamine now…and I hope to remain this way. If things do go ‘awry’ again, I too will choose colon removal. No more horrible meds with their terrible side effects for me either…ever again!

    Cheers,
    Bev
    :)

  4. TiiniTete
    TiinityJanuary 24, 2013 at 1:23 pm #

    This is a not so serious answer but I’ll write it anyhow… For your health, don’t do a PhD!! For the love of god!! It’ll destroy you!! All the stress and don’t be fooled by the “but I like it sooo much” feeling, since it is seriously devious….!!

    I’ve done one and.. Well… did my flares come every time I had a big deadline (read dissertation)?? yup!! So, go to your prof tomorrow and quit, don’t think about it, just do it… Then figure something else out… Less of a struggle…

    Well, it’s more of a joke. I am still taking risks and living a stressful life even though I mix it up with loads of yoga. ok not loads, I’m working on it… And you learn a shit load about yourself, or I did.. Good luck to you and don’t worry, ever, you’ll finish everyone does, unless you quit, then you’ll not finish…

  5. CatherineJanuary 27, 2013 at 5:41 pm #

    My daughter was also diagnosed at 16. She was able to stay in remission until the end of her freshman year of college. She stuggled through her fist semester of her sophomore year. After being on steriods so long, and having bad effects, her doctor started Remicade. I didn’t work for her. The 6MP she had been taking didn’t work either- even when increased. At the point when her hips were becoming very painful (even more so than the other joints) Her GI doctor suggested surgery. He was concerned she would develop something with the hips caused by steriods that would require a hip replacement. I forget the name of it. She had been thinking about it for quite a while, anyway. She took Spring 2012 semester off had started her surgeries. She just celebrated one year colon free, and couldn’t be happier. Last May was her JPouch surgery. Her surgeon does 2 surgeries; not the usually 3. He was wonderful. Most of his patients are college students, or kids that age. A coincidence: He was a Russian Lit Major before he went into medicine. I think he may have even taught it. My daughter has 1 or 2 BMs a day. She just went through a bout of pouchitis, but it healed up after 5 days on Flagly. She has her life back and it’s a wonderful thing!! And the best part – NO MEDS. I hope you will do as well as she has. It’s not easy, but it IS worth it. I wish you all the best!!

  6. Mike from Ohio
    Mike HJanuary 27, 2013 at 7:36 pm #

    Hi Kourtney,
    When you read thsi you will be 5 days post surgery. I am currently almost 3 weeks post surgery and feel amazng compared to how I felt pre surgery, my story will be posted on Feb. 6th on this web site.. I too had the joint pain in the knees along with other joints and the pain has improved to a tolerable level already and hopefully will get even better as time goes on. The bag is getting easier to live with by the day. You will go through bouts of depression and get discouraged at time but just remember. If you had UC and your colon was removed you will never get those nasty symtoms ever again and you will not have to worry about which diet or home/natural remedy to try to stay in remission because you are now in a permanent remission already. It took me only a couple weeks to believe that life without a colon is much better than life with one that is diseased with UC. I hope you heal soon and share your story please feel free to let me knowif you ever have any questions. All UCers need to stick together and the ones without our colons need to make sure we all get through this by sharing our experiences.

    Mike

  7. KyleJanuary 27, 2013 at 8:56 pm #

    Kourtney-

    You’ll do great with surgery! I am almost 7 weeks out of my colectomy and tomorrow I am going for my pouchogram to see if it’s all healed. As I type this I can easily say that I feel 100% and like I did before my diagnosis in 2010. I am 21 years old so I’m young like you. My doctors continue to tell me that youth definitely helps in recovery. It is a tough surgery but what I told myself before it was that if I can handle years of pain and suffering of colitis, then a few months recovery and life adjustments for surgery will be a piece of cake in comparison. I realize that you are probably in the hospital and recovering currently, so I wish you the best of luck and in your new life and I know that you’ll be very happy with your decision!!

    -Kyle

  8. BrittanyMay 9, 2013 at 11:46 pm #

    hello, you’re story caught my attention as I am at the point in my disease where I require surgery. Because i am so ill I will have to have an ostomy until i can wean off prednisone and feel well enough for reconstruction. I am very apprehensive and was wondering if you would be willing to take a little time to share your experience more in detail and give me any tips about what to except both mentally and psychical. Maybe we could connect over facebook if that would work for you.

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