My Journey Toward Surgery

My name is Dawn. I am a wife, mom, and runner and I have UC.

I guess it’s finally my turn to write my story for the site. I first want to thank Adam for running this thing, as well as the Facebook page. It’s nice to have a place where people can relate to what you’re going through. I truly believe people who are fortunate enough to not deal with IBD don’t completely understand what we go through—even if they want to.

In April of 2007 I gave birth to my first son. Like any first time mom, those early weeks were a blur of sleeplessness, figuring things out, and being awash in the perfect love that was my little boy. When he was about 10 weeks old, we took a trip to visit my mother (13 hour drive). When I arrived at my mom’s I was feeling a little off but figured it was just fatigue from driving that far by myself with a baby. Over the next day or so, I kept having to rush off to the bathroom. We decided I must have eaten something that didn’t agree with me. My mom kept giving me high fiber stuff to help, but it really didn’t seem to do anything. The trip home was a lot longer than the trip out as I kept having to stop, haul the baby out of the car, and rush into bathrooms over and over again.

My symptoms kind of came and went for a few months after that. I would have the urgency and diarrhea off and on for a week or so at a time. At some point the bleeding started, but I pretty much ignored it. I had received a colonoscopy in 2006 because of bleeding and that doctor had told me I had internal hemmoroids. I chalked these bleeding episodes up to being related to that. I slowly deteriorated and things got worse. It was all I could do to drag myself out of bed and to work each day. Outside of work, I pretty much slept all the time. Things finally got so bad that my husband insisted I see a doctor or he was going to drag me into the hospital. I had been putting it off because I was afraid of what they might tell me and I just wanted to be with my baby and take care of him.

I saw my first GI in Febraury of 2008. I received another colonoscopy. I woke up from the happy drugs to hear her tell me, “You have ulcerative colitis. Take these pills,” and she handed me a scrip for Asacol. I set out to learn all I could about UC, and as I gained more knowledge found myself completely devistated. Accepting that I had an incurable disease was very difficult for me. I was used to being very active and running lots of races from 5K’s to half marathons. I could not envision myself as a sickly person. My first year with diagnosed UC was not a good one. I was not happy with the care I received from my GI. My marriage could not withstand the burden of this new reality. I got divorced and eventually took the plunge to find a new GI. That is when things turned around for me for a little while. I was able to achieve some brief periods of remission and start running again…I even managed to do a half marathon. My new doctor was so much more helpful and compassionate . I met my current husband who is now my greatest source of strength and support. Things were looking pretty good for awhile.

Then the flares started again. My GI ended up starting me on Prednisone and that was the beginning of the steroid roller coaster. I would take my course, be ok for a few months, and then need it again. My doctor started wondering if I wasn’t steroid dependent and started talking to me about adding drugs like Imuran and Remicade to my treatment plan. I was nervous because I desperately wanted another baby and didn’t know what those drugs would mean for pregnancy or nursing afterward. Luckily, we managed to catch a window of remission and I became pregnant with my second son. My pregnancy was fairly uneventful as far as UC goes up until the early third trimester. My GI wanted me to get some labs and we found my CRP level was high. I wasn’t having any symptoms yet, but we decided to be proactive to prevent a full on flare and the risk of premature labor. I took another course of steroids which took care of things. In August of 2010 my beautiful baby boy was born. Despite the meds and my illness, he was healthy and perfect in every way. I felt so fortunate and blessed.

It wasn’t more than a month or two until I flared again. In the months to come I would repeat the cycle of taking a course of steroids, going off of them, and then flaring again. First it was six weeks in between, then finally only four. My GI was seeming more and more concerned each time I saw him. Then this last flare started and the 40 mgs of Prednisone we typically used did nearly nothing to slow it down. We tried adding Cortenema which made things worse. Two weeks in, I had a flex sigmoidoscopy and it was determined that I had a lot of active inflammation and bleeding still despite the steroids. We decided I would do two more weeks at 40 mgs and add in nightly Rowasa enemas. If that didn’t help, I was likely going into the hospital for IV steroids and Remicade.

I’ve done a lot of reading about Remicade and I just don’t want to take it. I appreciate that it’s helped a lot of people, but I feel like it doesn’t work for very long for a lot of people, it’s extremely expensive, and I’m not comfortable that we fully understand the long term effects on the body. I feel like taking it would only be delaying the inevitable in my situation. So, I made the decision to consult with the colorectal surgeons at the Cleveland Clinic.

During that first year with UC I researched everything to death. One of the things I spent a lot of time on was the j-pouch surgery. I found it fascinating, but in the end decided it was something I would never ever do. Fast forward a few years with this illness, and I found I had changed my mind. I knew from my previous research that the Cleveland Clinic was one of the best places to have this procedure done. I am lucky enough to live just 2 1/2 hours away from the hospital. Eight days ago I met with one of the surgeons who confirmed I was a good candidate for surgery. He also told me that mine would be a three step operation. I am scheduled for the step 1 surgery in 12 days.

It’s really hard to describe how I feel in these days leading up to surgery. I am confident that this is the best way for me to handle my illness at this point. At the same time, I have two small children and I’m terrified that something will happen and they will have to grow up without their mom. On a lesser note, I’ve had to cancel my plans to run a half marathon in May that I’ve been training really hard for this winter. Lots of ups and downs. I’m having to wrap my head around the idea of living with an ostomy while I am waiting for my other surgeries. In the midst of all of this, I am so grateful to have relatively easy access to quality health care that can help me to end this cycle of suffering. I am fortunate to have the resources needed to pursue this course of treatment. I recognize that and am trying to focus on how much this is going to restore my health and eventually give me my life back.

I have a blog going to write about this journey as I go through it. I’m hoping it will help me to have a place to process all of the feelings and emotions I’m experiencing. I’m also hoping it will eventually be a good tool for someone who is considering surgery and give them a look at what it was like for me as it happened. You can read the blog here: http://life-takes-guts.blogspot.com/

One last kind of random thought that keeps popping up in my head while I’ve been writing this: I see comments from people about worrying about dating and relationships with UC. I want you to know that it is possible! I met my current husband after my diagnosis. I remember telling him about my UC when we went running together one day because I was feeling pretty weak and wanted him to understand why I was struggling a bit. He was so compassionate and understanding and it was a tremendous relief to finally feel like someone got it and still cared about me despite this stupid disease. Over the last couple of years UC has kind of loomed over us at times….heck, I was puking my guts out the morning of our wedding because I was in so much pain from a flare….but he has become my rock, my strength, my caregiver when I need one, and my biggest cheerleader when I’m well enough to get out there in the world and kick some booty. If you are a single person struggling with this illness, please keep believing that the right person is out there for you, too. There is someone out there who will see you, not UC, and love you and care for you the way you deserve to be loved. Don’t ever give up on that!

I’ve been on or tried: Asacol, Lialda, Rowasa, Canasa, Cortenema, Prednisone, the SCD diet, the Paleo diet

Run4Pancake’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!! You Can Join too, click here for details




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2 Responses to My Journey Toward Surgery

  1. Adam
    Adam March 12, 2011 at 2:30 pm #

    Hi Dawn, I just had to read your story here again, big congrats to you for getting everything figured out with your UC!

    I so hope you keep us posted on how everything turns out for you.

    Best of luck with the coming weeks:))

    -Adam

  2. Jen March 12, 2011 at 3:12 pm #

    Dawn,
    Wow! I just read your story and visited your blog. We have a lot in common. When you wrote about having to put your baby in the crib because you had to run to the bathroom and trying to comfort him from there, I almost cried. I’ve done the same. That for me is the worst part about UC. Having it interfere with being there for my daughter when she wants me. Having her ask me outside the door if Mommy’s belly hurts. I’ve gone the Remicade route and am now on Humira, Imuran, SCD and acupuncture treatments. My doc wants the surgery and I’m trying to avoid it. It may eventually become a necessary evil for me as well, should this stuff not work. I also am lucky to live in Philly and we have some great hospitals here that do it. Please do continue to post about your experience.I pray that surgery will give you the relief you need and that you can get back to being healthy and happy.
    God Bless.
    Jen

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