Living with an ileostomy...

Posted by Rook @rook, May 23, 2012

I am a female in my mid forties who has an ileostomy due to ulcerative colitis. I had several failed surgeries to attempt to have a j-pouch and a BCIR. I am hoping to find other females with ileostomies so we could share our experiences and how you deal with the ostomy on a daily basis. I hate having the ostomy but need to learn to adjust to it as I’m not sure I am a candidate to attempt a continent ostomy again. I have been out of the hospital for six months which is the longest time span I have had between hospital admissions in four years so the ostomy is doing its job….BUT I would love to be able to be happy with the ostomy I just can’t quite get there mentally…..anyone able to relate to my situation???

Interested in more discussions like this? Go to the Ostomy group.

Having lived with an ileostomy since 1983 I can only say that it is a surgery which has kept me alive. I first had the traditional with a bag, and in 1995 had a BCIR done. The BCIR solved a severe problem I was having with the bags falling off and or leaking because of the extreme amount of liquid which I was putting out. After the ileostomy which was done for pan colitis it was discovered that my small bowel does not function properly, I have what has lovingly been termed rapid transit, contrast fluids for tests which should take 30-60 minutes to go from mouth to pouch only take 10 wifh me. The reason has yet to be discovered. I also deal with dehydration and other issues, but would never say that the ileostomy has been a surgery I regret having. I have married (twice) since having the surgery (both times while still using the bag) and have travelled and lived a pretty normal life. There are little things I have had to learn, like using the handicap bathroom so that I can rinse the catheter privately rather than in a public restroom. A wonderful little story….when my now adult son was about 12 and the word “assh…” was in vogue with his friends he told them they couldn’t call his mom one because I don’t have one. That brought many laughs to my life, and many questions from his friends and their parents who wanted to know what he was talking about. The problem with an ileostomy can be that it is an invisible disability and so others may not understand that there are problems with havikng one if your diet has been affected, or you take longer than others understand when in the bathroom. I have always been quite open about mine, for I view her (I call her Millie) as something which has saved my life. Look at another positive….you can never be the one who lets loose with that silent but deadly smell if you have an ileostomy.

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Hello Dear,
Thank you for sharing your story. I hope things improve.
Rox

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From TammyB.
I have had my BCIR since the age of 13. I am now 38. There have been many ups and downs since having my child but with all the trouble I have, I just keep on going on. The BCIR has allowed me to stay active with my child and family. I don’t know that the day will not come that I too will have to have the traditional ileostomy. But that will be the last resort for me. I want to keep my BCIR for as long as I can. Please feel free to contact me. I don’t know if I can be of help but I have had a lot of experience with bowel problems.

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I have had an ileostomy since 97 due to repeated strictures post major cancer surgeries. I fell into severe despression afterwards. Resection was unsuccessful. Finally had to make a permanent move to get to a better quality of life (love the outdoors, etc). Did not want to be tied to the next bathroom.. The ostomy bag makes life more predictable
I am a female in my mid 50s. Initially I connected with the Ostomy Assn…Lots of folks dealing with a variety of scenarios. I still subscribe to Phoenix magazine. The bottom line: Here I am. I continue to work, travel, welcome new experiences. There have been some hiccups with leaks at work, security riffling supplies in the airport , rustling of plastic or gassy sounds at inopportune times, but I focus on what I can do. My husband has been my greatest supporter…and my family. Still regarded as a freak by some,..that is a sad reality and those people are replacrd by those who do care. No doc or nurse can know what an ileostomate goes through unless they themselves are one…
Be your own best advocate. Keep a medical diary. Don’t let limitations define you, but what you can do defines you, everyday. I am swimming, working out, again and enjoying what is available/comfortable for me to do for others as well as for myself.

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nobody “likes” ostomies—-for me the key over last 5 years has been to tryout various events, volunteer activities etc. to see what works. It has meant structuring my life and then having to restructure my life numerous times. It’s embarrassing to volunteer and then explain why have to stop. All the people have been understanding. I always keep looking. A response to ostomies regardless of # of them is your physical limitations, food restriction, spiritual orientation ( big for me), and mental/emotional status and awareness of caregiver response. Do I do all this normally—no—misjudge a lot except for God’s mercy. I’m a senior citizen; wrote my obituary ( take care of husband), donated my body to Mayo R, living estate. These aren’t morbid activities, but control where I have it . My old body been through a lot since birth, when God wants me it’s time to give this body a break. So, every minute is now.

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@engelee

nobody “likes” ostomies—-for me the key over last 5 years has been to tryout various events, volunteer activities etc. to see what works. It has meant structuring my life and then having to restructure my life numerous times. It’s embarrassing to volunteer and then explain why have to stop. All the people have been understanding. I always keep looking. A response to ostomies regardless of # of them is your physical limitations, food restriction, spiritual orientation ( big for me), and mental/emotional status and awareness of caregiver response. Do I do all this normally—no—misjudge a lot except for God’s mercy. I’m a senior citizen; wrote my obituary ( take care of husband), donated my body to Mayo R, living estate. These aren’t morbid activities, but control where I have it . My old body been through a lot since birth, when God wants me it’s time to give this body a break. So, every minute is now.

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I like your common sense approach to living with an ostomy and the general process of aging. After all, we have little choice so we must 'just get on with it' and do the best we can. I have also made out my Will and made clear what my wishes are for after I die. You are still quite active and I commend you for that. I am the perfect model for being both 'socially distant' and/or in quarantine. I live alone. I don't go out at all unless I have a Dr.'s appointment. I get my necessities delivered twice a week and I have a home care nurse available if I need her. My old body is also ready to go.

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