Life Outside of the Bag - Uncover Ostomy
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Life Outside of the Bag

After my last blog post, I wasn’t really sure what kind of response I was going to get.

I wasn’t sure if people were going to mad, or upset or just not understand what I was trying to say.

After letting the blog sit for a little while, I was happy to see all the positive response that the Facebook page was getting for the post. I’m really happy that we’re all on the same “page”.

On that note, I’m not the only ostomate who has a life outside of the bag.

All the positive response has shown me that there are tons of other people out there who do amazing things and they don’t let their ostomy get in there way. There are also a lot of people who know ostomates and who don’t let those get in the way of their relationship, friendship, or the things they do together.

There are a lot of positive things going on in the ostomy world and I want to hear about it!

I’ve decided I want to start highlighting other ostomates or people who know about ostomies or whatever it is for the amazing things they are doing or have done. I want to mention some great people who are living the life they couldn’t have without their bag or without knowing about them.

Post here, facebook message me, or comment on the blog. I want to hear your story :]

Tags:
Jessica Grossman
info@uncoverostomy.org
9 Comments
  • Ed McComas
    Posted at 00:45h, 17 August

    I have had my ostomy since 2004, after 5 years of fighting to make a J-Pouch work. Being healthy beats the heck out of being sick all of the time.

    I am back to playing with old cars, crawling over, under, inside, and all around my 1956 Chevy BelAir and my 1956 Corvette. Both need serious help, or maybe it's me that needs the serious help. In any event I am back in garage, and back at work as a real life rocket scientist (yes, I really am…NASA engineer).

    Jess, I can't say enough good things about the positive image you are bringing to ostomies. In my case, it was the ultimate solution back to a healthy life, and a full life.

  • Mr Ostomy
    Posted at 00:48h, 17 August

    As a prominent Billionaire, I too have a public life outside my Ostomy. Working 16+ hours daily while balancing my health needs is a tough challenge.

  • Kylie
    Posted at 01:01h, 17 August

    I have had my ostomy since February 2009. Since then, my life has only been full of positive memories rather then being stuck at home on the couch and in the toilet due to unmanageable Crohns Disease for 3 years previous.

    In January this year, I travelled overseas for 9 weeks to Europe and the UK- I went bobsledding in the snow on Mt Pilatus, I walked up mountains, I ate on a floating restaurant. I went to the Leaning Tower of Pisa and had a fantastic tuscan evening filled with lots of yummy food and drinks.

    In June this year, I got engaged to an amazing man- who knows all about my ostomy and loves me for me! My fiance only knows me with an ostomy and thanks technology everyday that I could be kept alive. I am getting married in February next year and if it wasnt for my ostomy I wouldnt be alive today to be marrying my soul mate! My ostomy doesnt define me, its apart of me however its truly my lifesaver.

    Jess- keep up the good work, you are doing amazing things for those of us in the Ostomy Community!

  • Julian S.
    Posted at 03:19h, 18 August

    I was so excited to see such a pretty face attached to this cause. I had a colectomy in 1997 for ulcerative colitis and had an ileostomy for three months before it was reversed. At the time I was 32 and conscious of my physical appearance and what those around me would think. I had my first positive revelation when I was in Barcelona in 2001 and saw a young attractive female roller blading with her abdomen exposed. She had exactly the same scars that I had and I instantly recognized that she had obviously underwent the same series of operations I had. I know from my own experience that people have no appreciation of what it is like to have an ostomy or even undergo bowel surgery. I have managed to have relationships with women over the years and have come to terms with my condition but it took me some years to do this. Of course, an ileoanal pouch is in no way comparable to having an ostomy, but I know the experience of having had an ostomy and it is very encouraging to see you as a spokesperson. I firmly believe that you will be a positive influence in helping people to better understand Crohn's and Ulcerative Colitis and just how common these two diseases are. Clearly, if the young woman I saw in Barcelona and you are brave enough to show the world, then more of us will do the same.

  • Sara
    Posted at 17:28h, 19 August

    My Son is 3 years old and has had an ileostomy from being a few days old. Here is a brief look at his journey in pictues….

    http://www.onetruemedia.com/otm_site/view_shared?p=3cd10c3ab0298e52ecb803&skin_id=601&utm_source=otm&utm_medium=text_url

    We raise money for research we donated his bowel to, attend a 'diversions' activity group for young kids with bowel and bladder diversions. He attends main stream school and will show anyone and everyone his bag!

    xxxxx

  • Randi
    Posted at 03:41h, 20 August

    Just wanted to say….I was diagnosed 35 years ago with Crohns Disease. After several years and one resection later, I elected to have an ileostomy. It was absolutely the best decision I have ever made in my life. That was 25 years ago. I now have 2 beautiful children and a life. Do I love my bag? You bet. Like an unruly child, it can drive me crazy but I'd do over and over again for the quality of life I lead.

  • The Sinful Sot
    Posted at 12:06h, 20 August

    Next Thursday will be six (6) months with my permanent colostomy. It was what I call planned lifesaving surgery because of a stupid cancer. I also have crohn's disease (also stupid). While there was some dread when I was pre-op, if the world was s'posed to end once I became post-op, I'm still waiting.

  • Lisa Elayne Lenke Sousa
    Posted at 21:45h, 20 August

    I had a severe case of ulcerative colitis when I was 17 years old and had a colectomy one day shy of my 18th birthday in March 1987. Back then, with the help of my parents, I opted for the J pouch procedure. After the two stages of the surgery, I recovered very well . Unfortunately, I ended up missing a lot of school and had to make up my senior year due to the illness and the surgeries. However, being the very ambitious music student, it proved to be a very good thing for me since I continued to compete and being very successful in music contests and playing a lot. I even had the privilege of being solo first chair horn for the Washington All-State Band in 1988.

    Twelve years later I ended up with more intestinal complications and faced even more surgery (four of them) on top of my mother's death, while pursuing my Masters Degree out at Eastern. I can still remember talking to my aunt on the phone at the time and her saying "You have done this before and you can do it again.". I had complications with my J pouch and it had to be removed, leaving a permanent ileostomy.

    Since my final recovery from these illnesses and surgeries, I have cherished every single concert, rehearsal and practice time. I am a semi professional musician that plays in a symphony orchestra and several other groups in the area in which I live. I also eat very well and I am very active. I like working out, walking and hiking. As well as dabble a little bit in photography. I am always on the go. 🙂

  • Joanne Boucher
    Posted at 16:57h, 25 August

    Just wanted to respond to your blog I read earlier about wanting to hear about how peoples' lives got better since ostomy surgery..like most people, I thought it would be the end of life but after an adjustment period, soon found out it was the beginning:

    I was able to return to school and get a different college diploma, moved out of the boring small town I was living and returned to my less boring but still small "home" town of Thunder Bay and actually was able to get a JOB that paid MONEY and returned to university to get my social work degree.
    Fit some travelling in there visited Africa and taught English in Korea for a summer, one of my social work placements involved returning to Africa to work in an after school program for Youth and Vulnerable Children who were orphaned, mostly due to AIDS.
    Of course, in and out of relationships with boys and able to socialize and do normal friend stuff with my friends without being scared to commit to too many plans because of illness.
    All the same ups and downs bum poopers get.
    Like I recently said to a new boy, sometimes the thing you dread most ends up saving your life.

    Cheers,

    Keep up the wonderful work you're doing, inside ostomy and out!! Very proud to know of you!