About

 me!

Hello, my name is Mary. I am 26 years old and was diagnosed with Ulcerative Colitis in December 2005. I tried nearly all the conventional and non conventional treatments for UC including:

  • Steroid therapy
  • Colazal (Balsalazide)
  • Remicade
  • Cyclosporine
  • Imuran
  • Cortisone enema
  • Homeopathy
  • Elimination diets
  • Gluten free diet
  • Specific Carbohydrate Diet
  • Fecal transplant
  • Aloe Elite (supplement)

Some of these treatments gave me limited reprieve from the symptoms, but in December of 2012, 7 years from my diagnosis and nearly 8 years from my first symptoms, I found myself in the midst of yet another massive flare. I had lost 15 pounds in less than 2 months, was using the bathroom 15-20 times daily (at least 3-4 times during the night), was experiencing excruciating pain (I describe it as glass passing through my large intestine with each trip to the bathroom), fatigue, bloody stool, and loss of appetite. This time even the steroids were not much help, and I knew that I could not go on living my life this way. I just happened to catch an NPR news show featuring Dr. Russel Cohen from the University of Chicago. He was talking about his work with UC patients and research that he was heading at the university. My husband, Kyle, listened to the program online and prompted me to call and make an appointment with Dr. Cohen. After a lengthy review of my medical history with the disease, Dr. Cohen simply asked me two questions: “Do you want kids?” and “Can you have them now?” I answered: “Eventually” and “No” respectively. He then proceeded to tell me that I have exhausted all modern medical treatments, except for one: surgery. This came as a bit of a shock to me, because surgery was the one thing that I had spent the last 7 years trying to avoid. My local Gastroenterologists had seemingly used surgery as a scare tactic to get me to comply with their recommended drug regimens. I can remember one telling me that if I did not take the medicine that he was prescribing, that I would have to have surgery. I thought that meant that my activities would be limited and that I would be living the rest of my life wearing a stinky, disgusting poop bag-and at the age of 19, I thought that would make me completely repulsive to all males. Surgery was not an option! Dr. Cohen explained the surgery as a way to get my life back. He told me that I would be able to have children just a year after surgery, if I so desired (which I do not at this time… kids are still in the eventually column for me). He said that I could run again, and that I could get my life back. That was the phrase that he repeated countless times during my consultation, “You can get your life back.” I had nearly given up on that notion, coming to terms with the fact that I would live with the unpredictable timing of flares and the symptoms of UC for the rest of my life.

Instead, I am using this blog to share my experiences as I undergo three surgeries. These experiences include the surgeries themselves and my time with an ileostomy, and will end with a  permanent j-pouch. I am open to answering any and all questions, so don’t be shy, you now I’m not (I just admitted to the world that I tried a fecal transplant and that I shit into a bag that is stuck to my  abdomen).

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6 thoughts on “About

  1. Hello Mary,
    I have read your blog, and found it truly interesting, informative and inspiring. I am wondering if you would like Journey2pouch to be listed on my website – http://www.living-with-a-stoma.co.uk – under the Blogs section. I run my website on a voluntary and independent basis in order to provide as much information as possible to ostomates worldwide, and it is now recognised as one of the top ostomy resource websites in the world. There is no charge for being listed on my website. If you are interested, could you please email me – jean@living-with-a-stoma.co.uk – for further information.

    Many thanks, and take care, Jean.

  2. I have been reading your blog since you started it, but just now read this “About” page. I know how very open you are to discussing all the good and bad and yucky, but I laughed so hard when I read your last sentence about telling the world about the fecal transplant and shitting into a bag out of your abdomen! Having a sense of humor is one of the best forms of medicine!!! I love you, cousin!!

  3. Hi Mary! Thanks so much for sharing your journey! I am weeks away from my takedown surgery after having my loop ileo for over a year. It has been a good ileo and I have been able to travel, hike, and swim again. :) I noticed that you also did not let the ostomy hold you back. I am nervous about continuing on to get the j pouch connected after having such success with the ostomy. I don’t want the frequency to keep me from activities I enjoy. What has your experience been? Do you feel that you can do as much with your jpouch as you could with your ostomy? Again, thanks so much for sharing!

    • Laura, congrats on nearing your takedown! I completely understand the nerves leading up to the surgery, I was the same way. I loved the improvements to my life with my ostomy and was afraid that the jpouch would bring back some of the struggles. It did take a little time for my body to adjust to the jpouch, but I am very happy I went through with it. Also, it was nice to know that if years down the road if the jpouch failed I could return to a normal life with an ostomy. My experience with my jpouch has been amazingly positive! It seems like as the months passed I realized that I was using the bathroom less and less and it was easy to forget that my digestive system isn’t like everyone else’s. I am just over a year out from my takedown and I use the bathroom 3-4 times a day and have nearly no limitations to what I can eat. I love fresh veggies so I just opt to eat my salad after my meal instead of before. I take an anti-deihreal at night so that I don’t have to get up and use the bathroom, but other than that I am “normal”. If you have any detailed questions that I didn’t answer you can email me at tz.maryk@gmail.com and I will do my best to answer them for you! 2015 will be a new year for you!

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