About me

karenorr

My Story

After suffering from Ulcerative Colitis for over 10 years, and enduring complications from multiple surgeries, my entire colon was removed, resulting in a permanent ileostomy.

It’s funny how long it took me to write this. Even though I have lived with an ostomy for almost a decade, and am confident offering support and speaking about my condition, I find myself feeling vulnerable about being open here. I suppose it takes me back to the feelings I had at the beginning of my story. The stigma and fears you (or someone you know) might be feeling now.

I first got sick when I was 18, and spent my 20’s as a young professional, madly dashing from boardroom to bathroom. As a young mother, I would race down the hallway carrying my baby’s highchair to spend countless, painful hours in the washroom. Ultimately my illness prevented me from working, due to chronic pain and fatigue, and my quality of life was very poor. Looking back it’s hard to believe I thought life could be worse, but because of the stigma of having an ostomy, I stayed sick a lot longer than necessary.

With society’s emphasis on appearance, it’s challenging to maintain a positive body image with an ostomy. The fear of judgment and rejection can create depression and isolation.  Initially, it can be upsetting and demoralizing, and imagining normal activities, not-to-mention intimacy can be overwhelming.

Between my full time job, traveling and trying out all sorts of activities I thought I could never do again, I founded myKareKit.com.  The website offers product reviews and a style guide so you can get back to everything you did before your surgery and more. This blog supports myKareKit.com

When I talk with people who share my condition, I often recognize shame in their eyes, and when they look into mine, they see the shame is gone. It is my intention to offer a light and informative resource and my hope that you will move forward with me today.

Sincerely,

Karen

Note: myKarekit.com solution items featured are never paid for advertising. I feature those products I like or things I have actually reviewed. Ads will be clearly marked.

20 thoughts on “About me

  1. Hi Karen, I finally got your web site from your mum. I think what you have done is great and very encouraging to new ostomy patients. As you know I had my surgery over 40 years ago when there was not any outside help. Being able to sew was a great help and I designed all my bathing suits. I make panties out of swim suit material which gives extra support. I am still very active and life is wonderful. Wishing you all the best in your venture and healthy life.

    Best wishes Irene

  2. Irene – How wonderful to hear from you! I still remember talking with you by phone before I took the plunge to surgery. I can almost hear your voice, “it’s not a bed of roses” you said, then went on to tell me of your active life.

    It was very special to meet you in person and to read your words here. Thanks for continuing to inspire and encourage! I am now simply doing what you did for me then.

    Fondly,
    Karen

  3. Hi Karen! I think what you’re doing is great too! I’ve been living with my ostomy for almost 6 years now. Time flies! Your style tips are great on here too. I find that if I’m covered well with a cute top that has just the right cut, I have so much more confidence. Wouldn’t it be great to have a tv show like “What Not to Wear,” but call it something like, “What to Wear With an Ostomy.”
    I love straight talk about our challenges. It’s so refreshing. I can’t imagine all the suffering you went through before you decided to have your surgery. Mine was due to cancer and I’m just happy to be alive. Who cares how I have to go to the bathroom! lol

  4. Hi Karen,

    Stumbled upon your blog through WordPress Tag Surfer. So glad I did! I’ve really enjoyed reading your archives, and I checked out your website – spectacular!! Hope you don’t mind if I link to both your blog and your website from my blog.

    I’ve got Crohn’s disease and been an ostomate since age 15. Kudos to you for being so open, and being willing to use your experience to help others! And thanks for linking to UOAA 🙂

    Best wishes,
    Kristin Knipp
    UOAA Pres. Elect.

  5. Karen-

    Nursing school has given me incredible opportunities in the last year. One of those was the chance to listen to you speak to our program about your journey and living with an ostomy. You were eloquent, positive, and realistic. You have helped shape some of us to be better nurses (and people) by having the courage to be real and share your story. I look forward to sharing your blog as a resource for my future patients.

    Thank you!

    Gina
    Shoreline Community College
    Nursing

  6. I just read your blog, I too had ulcertive colitis. I had colitis for about 18 years from my early 20,s to 37 when I realized the medicine was going to kill me before the disease. I worked the whole time as a ups driver so you can imagine being on the road and have the bathroom emergencies. when I first became a father I knew I couldn’t be a good father being so sick and never wanting to leave my house. I had the surgery in 97 and never looked back. I was lucky that I had a wife who stood by me, I think its always been more of intimate hang up to me than her, I think for a lot of us that’s what is in the back of ours minds. Well its good to hear from other ostomy patient, because I keep a lot to my self because, I don’t tell many people what I’m thinking about when it comes to my surgery, even my wife, I want people to think I’m normal. I hope I can hear from more ostomy patients. Take care……..Chris

  7. Hi Karen,
    Just found your blog yesterday and have read every single post. Thank you, thank you for sharing your experience. It sounds as if you have two very amazing daughters. I also have two teenage daughters and a 12 year old son. They have been amazing. Instead of being turned off by my recent colostomy (5 months) they are just happy to have a healthy mom. I also have an extremely supportive husband who has been by my side every step of this journey and has been by biggest cheerleader?

    I have had Crohn’s disease for 30 years (I am now 43) with many ups and downs. In June of this year I had emergency surgery and had what I hoped would be a temporary loop colostomy. The reversal was planned for September 15th but after 4.5 hours in the operating room I woke up with a permanent colostomy because I just didn’t have enough healthy colon to put me back together.

    I feel I received great care from my surgeon and the nurses at the hospital but no one really prepared me for the “body image issues” you deal with as an ostomy patient. As you know I felt alone and unattractive and even after I was feeling better physically I had a hard time wanting to be around people. I am past that now….I have too much life to live and 3 great kids that need their mom.

    I found your blog when I set out to find ostomy patients of a similar age and lifestyle. I am new to this ostomy club and your thoughts, ideas and resources give me hope and courage to move on. Thank you for sharing your journey and giving the rest of us the courage to get back to life as usual.

    Wendy

    1. Wonderful to hear you’re going to support your friend – I’d love to help. Email me via my contact page please and let’s talk!
      Karen

    2. Hi Wendy my name is jan and i have just read your blog i am sorry it didn’t work out for you but i hope life is good for you now.

      I am writing to you because i have a ileostomy and have had for 14 months i am waiting to have a j pouch made if they are able too, i am 62 years old and i don’t like the bag at all so i am hoping that when my time comes for the operation they can make the j pouch and it works for me if not i will be lefted with a bag for the rest of my life.

      I find it very hard to buy clothes that you can wear without the bag showing specially if you are out and the bag starts to fill up and there isn’t a toilet that you can go to to empty it out.

      I hope you don’t mind me writing to you as i live in FOSEDALE A SMALL COUNTRY TOWN IN AUSTRALIA. my address is 57 DUKE ST, ROSEDALE VICTORIA 3847.

      I would love to here from you so i will be waiting to see if you have the time to write to me thank jan

  8. Hi I tried to click the link to submit a product for you to review but it says the link is inactive. I am a designer and I have been working on something and I would love some feedback. I hope to hear back. Take care.

  9. Hi Karen,

    I wanted to share some resources that I think would be great for your blog but I can’t find a contact email for you. If you could email me at the email address I listed, I’d love to give you details! I hope to hear from you soon!

  10. IHi my name is jan and i am about to have the op done i am from australia of a small town named sale victoria. I was hoping you could give me some help as i am scared about having it done it has taken me a all time to make my mind up to have it done amm am just waiting how for a date and time to go into hospital to have it done.How do you hind it from people? do you wear somethink over the bag so people can,’t see it, are there some special wear of wearing your clothes so people can’t see the bag. I am very worried about this part of the op, Can you help me out on this side of things. I am not worried about the op, but my children are they think it is going to chance how i fill about them specially my daughter becausae she lives a long way away from me she thinks the ckoses she has with me will be gone and i will become this person how has a poo bag on and i wont be able to live the life i live now i have tryed to explane to her that it isn’t going to chance things with use that life will be the same as before but she thinks it wont be i hope you can help me in someway thank you very much and i hope to here from you. jan

  11. I can’t wait to read your entire blog! I’m not trying to be lazy, but would it be okay if I repost (and credit/link to) your work occasionally? I’m so relieved to find your site, and I’m trying to collaborate with other bloggers and publicize good information. I hope all is well with you!

    1. Hi karekit do you remember me (jan), how are you going i haven’t heard from you for a while so i thought i would drop you a note to see how you are and if you have had any problems at all, i hope not hope you have been well and getting to look forward to christmas and the new year which isn’t that found away now.I health has been the same as before no better and still waiting to go into hospital for the j pouch to be done, i have been doing a lot of reading on the net about the j pouches and a lot of people say they have had it done and it hasn’t worked for them, so now i am in to minds about having it done i have been thinking about making the ileostomy as a premeditation one what do you think. I would like your in put into it for me as i just don’t know what to do any more. Here wishing you to have and great Christmas and a Happy New Year and may 2013 be a better year all round for everybody. Hope to here from you soon from jan 😊
      Date: Mon, 26 Nov 2012 06:01:43 +0000
      To: janhatters@hotmail.com

  12. Hello one and all , love reading all the stories about ostomy care, but I still have’nt read anyone with a duel-ostomy. since birth I’ve had an colostomy and illostomy, I am 54 yrs female, I’m a awarding pet stylist of 35 yrs,. most people I meet have no idea I have 2 ostomies to take care. I ‘ve traveled the world,, love sports, and nothing better then a good rock & roll show,. I’ll travel anywhere for a good concert, love to garden, take care of my critter crew, would love to hear from anyone with 2 ostomies to deal with, one is alot of work, 2 twice as fun, { NOT!!!} any thoughts drop a line, kiki

    1. Hi Kiki!
      I’m so glad you shared your story and how adventurous you are. I’m a concert lover too! Living with a dual-ostomy – wow. And you’ve been living with this since birth, that’s a totally different perspective. I’m glad you’re a go-getter and don’t let it slow you down. Let’s hope someone connects with you here who shares your challenges. Karen

      1. hello karen, thank you for your reply, well the way I see it, good lord gives all of us a bag of lemons> It’s how sweet you make your lemonaid? , that goes for life, I have no time for boo-hoo stories, but anyone out there with a story close to mind, would love to chat., keep the faith, and remeber if you think your life is hard, there someone out there, where it twice as hard, many blesses to all, kiki

  13. My name is jan and i had a car accident which led to me having a temporary illostomy loop which was done 12 months ago what i am scared of that when they do the get operation they will find that there isn’t enough of the large bowel left to make the j pocket and i will end up with colostomy for life. My email address is janhatters@hotmail.com if anybody reads this and wants to write to me that would be great. I hope hear from someone soon jan

  14. Hi Karen,

    I really enjoyed reading your blog and I also nominated you for The Versatile Blogger Award. There are a few steps to accept this award and they can be found on my blog post here:

    http://amazingadventuresostomyincluded.wordpress.com.

    No worries, if you don’t want to go through the process (honestly it does take awhile) but I wanted to share your site with my readers, as well as acknowledge you and the amazing work you are doing!

    With warmth and gratitude,
    Julie

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