I’ve had Crohn’s colitis since 1997, but in March 2008, I had permanent ileostomy surgery and since then I have been disease-free and medicine-free. This blog is to document my experience and thoughts of living with a permanent ileostomy. If you would like to read more about my story, see my post My Story.
Emily/New Life
See the joy? This picture was taken on my 31st birthday, two months after surgery.
If you would like to contact me directly, please email me: emilylikestowrite@gmail.com
Emily, you are a true miracle! You are a true Johnson in this picture. Your dad sent your Life with a Pouch. Peace, happiness and good health WILL continue. Love your cousin, Elailne
By: Elaine Kokotajlo on March 20, 2009
at 9:00 am
Hello Emily – This day brought me across your blog. I am scheduled to have an ileostomy on June 9th. I am have begun to devour your blog for information. Thank you Emily – Your Friend – Annie
By: Annie on April 27, 2009
at 3:15 pm
I’m rooting for you, Annie! I hope you find all the information you are looking for. If you go to my About page, you will see my email address. Feel free to email me directly if you want! -Emily
P.S. For an account of the lead-up, the day of surgery, and my overall thoughts, see my post, Hello, Fellow Ostomates.
By: lifewithapouch on April 27, 2009
at 3:17 pm
Annie here again, from my last post a year ago … And with my 1 year old stoma, I am glad to have the first year behind me. I think in hindsight, it will prove to be the most difficult of all. I was rerouted to your blog due to a current post! This was the first I had read your reply. I do have questions and will be emailing you!
By: Annie on August 9, 2010
at 6:23 pm
I just had my ileostomy surgery a week ago and a friend directed me to your blog. I’m so glad I found it because I am a female with Crohn’s colitis as well. I’ve read a lot of your past posts and its a big comfort to find someone who has had some very similar experiences. Thank you for sharing your life with a pouch here. I hope my ileostomy will provide me the same relief yours has.
By: Ellen on August 21, 2009
at 6:52 pm
The first couple of weeks are pretty tough, but I’m confident that after that you will never look back! New life, here you come!
By: lifewithapouch on August 21, 2009
at 10:12 pm
You are so beautiful. In this picture, in person, on the planet, off the planet. Ahh. I miss you. It was nice to see your face here.
By: clarissa on August 25, 2009
at 2:31 pm
Ok, you got me going. Reading your blog has inspired me. I’ve decided to start my own blog so I can take the next 5 weeks of waiting for surgery and not totally want to chew my limbs off in anticipation and fear. I warn you that my blog is the polar opposite of your blog in all manners of sophistication and maturity.
http://steven-asecondchance.blogspot.com/
By: Steven on September 25, 2009
at 10:49 pm
Nice to see a blog from a fellow ostomate who is living their life to the fullest
. Will be following your journey.
Mary
http://muggins7.wordpress.com
By: muggins7 on August 8, 2010
at 5:05 pm
Hi Emily, reading your post about the cat jumping on you; have you considered making a hard cover for the bag / stoma. I have been experimenting with all sorts of ideas and made a little website about it. The design is constantly changing as time goes by. I am now wearing something completely different to my original design with a bottle, but uses the same principle. I just thought it might be helpful for your situation with the cat.
By: Paul on August 26, 2010
at 9:34 am
Hi Paul – thanks. Since this has only happened once in 2 1/2 years, I’m not too worried about it, especially since it didn’t turn out too badly. I did at one time by the Ostomy Armor product for kung fu. It fits pretty well, but I found that for twisting and turning and potentially getting hit at an angle, I was more comfortable and more able to protect myself without it. (Sometimes it would press into the side of my stoma). Anyway, I’m glad for people to learn about new products that might help them.
By: Emily York on August 26, 2010
at 2:50 pm
Thanks for the insight about the Osto Armor thing. It’s good to hear from someone who has actually used it.
(Wow – kung fu, eh? I’m impressed)
By: Paul on August 26, 2010
at 2:59 pm
Yeah, the Ostomy Armor was designed by a rock climber, I think, and I think it would work very well for direct impact. But for impact that may come in at an angle, it can shift right or left and then the foam inset hits the side of the stoma.
By: Emily York on August 26, 2010
at 3:03 pm
Emily – We seem to have similar attitudes toward challenges!
I like your site, and the positive attitude you exude to others. There is so much to be done to bring awareness to IBD and Cancer and Ostomies, as well as comfort, hope, and encouragement for the continuously growing number of people that had/have/will have these life challenges.
I started a blog to “Spark positive attitudes by ostomates and about ostomates, by sharing real-life experiences, showing good living after-ostomy … to inspire each of us to live bigger”.
Apparently, many people want to hear our ‘yes, we can be active’ message. I am amazed at the number of hits to the ‘Favourite Links’ on my site.
I have added your site to my ‘Favourite Links’. I wonder if it is appropriate for you to add my website to your OSTOMY sites.
Website http://www.livingbiggerwithcolostomy.com/
Favourite Links http://www.livingbiggerwithcolostomy.com/p/favourite-links.html
Facebook Page http://www.facebook.com/LivingBiggerWithColostomy
Cheers
Paul
By: Paul Riome on June 18, 2012
at 3:52 pm
I added your link to my site.
By: Emily York on July 10, 2012
at 12:25 pm
Hi Emily, I like your blog so much. It is full with possitive attitudes and also your experience of how to go on with life after surgery. I have permanent colostomy since March, 2012. So, I try to search for information about ostomy to help myself. I live in Thailand so I don’t have so many choices of the ostomy product selection. Most products are in USA or UK. I have to rely on the hospital to order my pouch. I have many questions in mind to ask you. Maybe I should write email to you.
By: Lap on October 29, 2012
at 1:35 am
Hi This is what I use all the time now – an Ostobelter – home made. Very fiddly and awkward to make but well worth the effort.
http://ostobelter.wordpress.com/
(sorry – couldn’t remember how to make the link on my comment)
By: Paul on April 25, 2013
at 1:20 pm
Hi Emily, I hope to find some advice on your blog. My surgeon had to place my stoma a bit high to a place right under my belt line. You can imagine the problems. I am looking for a hard cover as a solution. Otherwise, the belt chokes off the pouch making the actual size of the pouch very small. Ideas??
Bruce P
By: Bruce Pennington on January 9, 2013
at 12:16 pm
hm. i did purchase a hard plate cover once for sparring. I’m not sure if it will do what you need, and it’s kind of bulky. It was designed by an ostomate who does rock climbing and wanted to protect against a direct impact. http://www.ostomyarmor.com/products/
By: Emily York on April 25, 2013
at 9:55 am
Thanks, I actually found that website too. I think it is solution I’m looking for. The guy who diesigned them is out in Guffay, CO. Not to far from here.
Thanks
By: bruce pennington on April 25, 2013
at 10:05 am
cool, sorry it took me a while to get back to you. the blog stopped notifying me of comments, and sometimes I get busy and forget to check in.
By: Emily York on April 25, 2013
at 10:06 am