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?

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

@katydid77

@dideon Two things my husband has found help with the irritation. Milk of magnesia on the affected tissue and the best one -- Nasacort nasal spray. Be sure to dry with the hair dryer before attaching pouch. We wish you well and hope you find a solution.

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Interesting I also have irritation from the pouch . Clever ideas
Thank you

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@dideon

I have gone through many things, but my biggest challenge has been dealing with a bad stoma rash. I have been to stoma nurses and have tried many things to try to heal it, but nothing has worked. It will be okay for awhile, then it flares up again and it is very painful.

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@dideon Two things my husband has found help with the irritation. Milk of magnesia on the affected tissue and the best one -- Nasacort nasal spray. Be sure to dry with the hair dryer before attaching pouch. We wish you well and hope you find a solution.

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As I said in my comment, it's the bad rash I'm dealing with now. I also have three hernias resulting from the three surgeries.

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@dideon

I have gone through many things, but my biggest challenge has been dealing with a bad stoma rash. I have been to stoma nurses and have tried many things to try to heal it, but nothing has worked. It will be okay for awhile, then it flares up again and it is very painful.

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I know what you mean about diverticulitis . I have had that since I started chemo. That is the worse pain !! I had a ileosohy done because they said that would help the pain! Now they old me to get my affairs in order .
No idea if they will try doing chemo in the next 2 weeks or not ,
I want to live but by the sounds of it have I no choices anymore !
Good luck with your pain snd hope you do really well with the colonoscopy . That will help I am sure ,

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@colleenyoung

Hi Dideon, welcome. I can't imagine things moving so fast. Thank goodness you were able to get to emergency surgery.

I'd like to introduce you to @msgtrebholtz @engelee @hodagwi and all the fellow ostomates.

Dideon, with such a sudden change, what did you find to be the most challenging adjustment? Six years since, what are you able to today that you didn't think would be possible?

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I have gone through many things, but my biggest challenge has been dealing with a bad stoma rash. I have been to stoma nurses and have tried many things to try to heal it, but nothing has worked. It will be okay for awhile, then it flares up again and it is very painful.

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@dideon

I have a colostomy. Diverticulitis. I didn't even know I had it. I never even heard of it, but on the night of Nov.4th, 2015, I woke up so sick, lost total control of my bowels. I thought I was dying. I called 911 and had emergency surgery.

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Hi Dideon, welcome. I can't imagine things moving so fast. Thank goodness you were able to get to emergency surgery.

I'd like to introduce you to @msgtrebholtz @engelee @hodagwi and all the fellow ostomates.

Dideon, with such a sudden change, what did you find to be the most challenging adjustment? Six years since, what are you able to today that you didn't think would be possible?

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I have a colostomy. Diverticulitis. I didn't even know I had it. I never even heard of it, but on the night of Nov.4th, 2015, I woke up so sick, lost total control of my bowels. I thought I was dying. I called 911 and had emergency surgery.

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@jlind12

I had an ileostomy in 2003/04 then had the reversal surgery. I am now contemplating having a colostomy surgery because I am currently spending so much time in the bathroom. I suffer from constant constipation which results in diarrhea which causes bladder infections, etc. I'm interested in finding out if I'm only jumping from the fire into the fry pan or if this will be a solution.

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@jlind12, I'm wondering what you decided? Did you talk with your health care team about getting a colostomy?

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I had an ileostomy in 2003/04 then had the reversal surgery. I am now contemplating having a colostomy surgery because I am currently spending so much time in the bathroom. I suffer from constant constipation which results in diarrhea which causes bladder infections, etc. I'm interested in finding out if I'm only jumping from the fire into the fry pan or if this will be a solution.

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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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