Ostomy: Adapting to life after colostomy, ileostomy or urostomy

It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine to leave your body.

Many questions may run through your mind as you practice good ostomy care and live your life. It can help to talk to others who have been there. Perhaps you’d like to ask others questions like: What can I eat? What about leaks? Can I go back to work after colostomy? Can I ride a bike with an ileostomy? Will everyone figure out I’ve had urostomy surgery just by looking at me? What about intimacy?

Welcome ostomates. Let’s talk frankly about living with an ostomy. Why not start by introducing yourself? What type of ostomy do you have? How’s it going?

@becsbuddy

@engelee I certainly admire you for talking so openly about your health and helping others. I can understand that meals must be a problem. Is it possible for you to eat out with friends?
Have you read the posts by @hodagwi —he could certainly use some info from you

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Oh I do because I have wonderful friends. But usually instead of hamburger I just get meat , appetizers at high quality restaurants are pretty good. I go for the friendship more than food.

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I love to go out lunch with my friends. However, there are 2 considerations: potential leak from urostomy and food restriction. The first requires some strategizing I can’t sit for long period of time in a straight chair so I may be the one to excuse myself. The 2nd doesn’t really count because I’m there for good conversation . I may have acceptable bowl of soup and I usually find something in appetizer to eat.

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The posting on this Ostomy site all seem to be old ones. Is anyone still watching this site?

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yes. we see the comments and updates from old postings as well as new postings.

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I have had my ostomy since June of 2019 and I am still having several different problems. First my skin doesn't seem to accept the adhesive on the flanges and falls off after one or sometimes two days. Second the stool which was too fluid in the beginning is now the opposite. I was instructed to take fibre supplements and they helped in the beginning but soon found that even when I cut down the amount and took it only every two days the stool became too stiff. Also, the stoma has changed it's shape and is now quite flat at one end and sticks up as it should on the other. I have an ostomy specialist which I have visited twice and my barrier ring, flange and bag have all been changed multiple times. Does anyone have any advice on any of these problems? I would appreciate any suggestions.

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Sense-care is an adhesive wipe that works very well for me after others I tried failed. I have learned to always think allergy when my skin irritation won’t stop.I had problems with stool consistency. Finally a nutritionist helped me to stop eating a lot of fiber. I now eat white bread, rice. I avoid all sugar and from the start stopped all caffeine and only drink to thirst per my mayo urologist. Question the fiber supplements. My change to enriched grain greatly improved my life. Get with a nutritionist, physicians are not the best for nutrition.

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@engelee

Sense-care is an adhesive wipe that works very well for me after others I tried failed. I have learned to always think allergy when my skin irritation won’t stop.I had problems with stool consistency. Finally a nutritionist helped me to stop eating a lot of fiber. I now eat white bread, rice. I avoid all sugar and from the start stopped all caffeine and only drink to thirst per my mayo urologist. Question the fiber supplements. My change to enriched grain greatly improved my life. Get with a nutritionist, physicians are not the best for nutrition.

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Thank you for your thoughtful response. I have been using an adhesive cleaner wipe that my skin tolerates, I then wash this off with soap and water and then Cavilon wipes around the stoma with a dusting off stoma powder. I agree with you that the fibre supplement is not the answer and I will ask my GP for an appointment with a nutritionist. I admire you for your strength and willingness to help others. My life is easy compared to yours. Thanks again.

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@bcstew

The posting on this Ostomy site all seem to be old ones. Is anyone still watching this site?

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@bcstew We just opened the new Ostomy Group and moved over the older conversations. You will start to see new conversations mixed in. See all the Ostomy discussions here: https://connect.mayoclinic.org/group/ostomy/

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Hi everyone, We have now opened a new group dedicated to supporting people living with an ostomy. To not miss a post by fellow Ostomates, I suggest that you follow the group. Here's how:

1. Go to the group home page: Ostomy https://connect.mayoclinic.org/group/ostomy/
2. Click + Follow below the description of the group.
3. Select how you wish to be notified (by email for every new post or once daily in a digest).
4. Click UPDATE and close the pop-up.

Browse the topics or start a new discussion with any questions, challenges or successes you'd like to share. Welcome to the group.

Ostomy group follow

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@rwfliess

I see that this group isn’t very active, currently. I had my ileostomy at Mayo in January 2013. I am very happy with it. I haven’t read all the posts above yet, but maybe they’ll be something new for me to learn or contribute. Fingers crossed this thread becomes more active… I will definitely participate. I’d really like to help people not be scared.

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I was diagnosed with Ogilvie’s Syndrome in 2018. Had an ileostomy in October of 2018. Later developed a herniated stoma.

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Hello everyone. I recently found this site for transplants (Haven't had it yet but it's coming) and this one.
I had UC for about 8 years and got to the point where I was going to the bathroom about 30 times a day. In July of 2017 I had a total proctocolectomy with ileostomy. Mine is permanent. It has been a new lease on life. Except for the first couple months I havent had any real issues; except for some intermittent skin breakdown, so I consider myself lucky and am very happy with the decision to go this route. I also feel lucky because I never really had the "hate my bag" issue, nor have I ever worried about what others think. It's just part of me now and until the TIES system is available here, or I go to England to have it done I will just plot along.
Thank you for letting me tag along here.

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@msgtrebholtz

Hello everyone. I recently found this site for transplants (Haven't had it yet but it's coming) and this one.
I had UC for about 8 years and got to the point where I was going to the bathroom about 30 times a day. In July of 2017 I had a total proctocolectomy with ileostomy. Mine is permanent. It has been a new lease on life. Except for the first couple months I havent had any real issues; except for some intermittent skin breakdown, so I consider myself lucky and am very happy with the decision to go this route. I also feel lucky because I never really had the "hate my bag" issue, nor have I ever worried about what others think. It's just part of me now and until the TIES system is available here, or I go to England to have it done I will just plot along.
Thank you for letting me tag along here.

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Good Luck…Don't Forget To Let Us know all the particulars and the Doctors who Did That…?

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@idino

I was diagnosed with Ogilvie’s Syndrome in 2018. Had an ileostomy in October of 2018. Later developed a herniated stoma.

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Welcome @idino and @msgtrebholtz.

@idino, I am unfamiliar with Ogilvie Syndrome. It sounds like diagnosis to ileostomy to herniated stoma moved really fast for you. What has been done about the parastomal hernia? Have you had to have surgery and move the stoma?

Jason, your attitude is commendable and that you've adjusted to "life with a bag" reasonably easily will be a great support to others here. How has the ileostomy given you a new lease on life? What are you able to do now that you couldn't before?

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@colleenyoung

Welcome @idino and @msgtrebholtz.

@idino, I am unfamiliar with Ogilvie Syndrome. It sounds like diagnosis to ileostomy to herniated stoma moved really fast for you. What has been done about the parastomal hernia? Have you had to have surgery and move the stoma?

Jason, your attitude is commendable and that you've adjusted to "life with a bag" reasonably easily will be a great support to others here. How has the ileostomy given you a new lease on life? What are you able to do now that you couldn't before?

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I appreciate your kind words Colleen.

As a kid, and when I was in the military I always loved to run. For about 8 years that was nearly impossible. Unfortunately I never figured out how to carry a port-a-potty on my back so I was stuck inside. Treadmills are great if it is raining or snowing, but nothing beats being out on the road.

When I was in the hospital in the summer of 2017 I told myself that as soon as I was able I was going to start running again. It was a slow go at the beginning. Lots of setbacks with trying to figure out a good bag set up, then figuring out a good way to secure the bag and make sure I didn't pull the bag off or end up with a hernia.

I set my sights on 5k's to start, and in 2018-19 I ran about 20 of them. I am running 8-10k on a pretty consistent basis now and am running in several virtual events while everything is shut down.

My goal is the Earth Day 1/2 marathon next spring in St Cloud, MN. I would also love to go down to Jacksonville, Florida for the river run 15K one of these years. When I was stationed there in the 90's I ran it twice and it would be a great way to feel like I have come full circle.

There are so many other things. I love to hike and go on long walks with my dog. We Went to the black hills in 2018 for a week and hiked over a 100 miles. It was great! Just think about the new found time that used to be spent in the bathroom! The last few weeks before my surgery I was going over 30 times a day!! Im free!

If anyone has questions, or needs help with anything please ask. I have gotten myself through a lot of situations by trial and error and if you can learn from my mistakes and the goofy MacGyver tricks I have figured out, then that is one less painful day you have.

Thanks again for allowing me to hang out with the group. I look forward to helping and learning for all.

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I don’t know why all the people getting a variety of ostomies aren’t using this good connection. I have 2 ostomies and a Hartman’s pouch. In fact I’ve had an ostomy since age 5 ( long time ago) . Born with extrophy of bladder, ( bladder exposed on abdomen. The docs removed my bladder, and put both ureters in the sigmoid colon. So all excrement came out the rectum mixed together. Many diet restrictions ( 0 salt diet) for 69 years. My blood work was always abnormal . After my MD at KU retired, I went to Mayo and have Dr. Igor Frank, my idea of the man who has given me excellent care. I developed a perforated diverticula and abbess he told me it was necessary to get 2 ostomies. He and Dr. Heidi Nelson ( former head of colorectal surgery) did an 8 hour surgery. Now, 6 years later, my life is different and needs adjustment according to minor problems—mostly diet. I am active in community, know my limits, always prepare for emergency when out, but have learned to enjoy the pleasure of friends, walks, books and above all God. I get discouraged at times, but I’m also aging. I attend an ostomy group here at home, got to Mayo’s every August for various scopes and feel extremely well attended. Dr. Frank kept me going to the point I am longest living person in Mayo history with ureterosigmoidostomy. I think everybody with an ostomy has their own experience and tips and I would like to hear from them.

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