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.

@fbt217

I wasn’t able to have a reversible. As far returning to a normal life, that’s possible with some lifestyle adjustments. I have found that if I eat out I will need to empty my pouch relatively soon. I carry a collapsible Platypus bottle in my fanny pack for that purpose.
On rare occasions I have had a leak so I carry a pouch etc in the fanny pack as well.
The Boy Scout motto “Be prepared” is the key.

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Haven't heard of Platypus Bottle. Will check. Emptying away from home is challenging. My output is like diarrhea all the time. Need experiences of others. My ileostomy as 3 yrs ago due to dismobility.
Thanks for sharing.
Cynthia

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@angievaz29

Hello, I’m Angela I had my first ileostomy inlay 15 because I have familia adenomatous polyposis (fap) at first I struggle with it I got depressed and wanted to be anti social but I was able to get a reversal done and in 2019 I had to get my second ileostomy because I was struggling with obstruction and they couldn’t exactly find out what was causing them but I was more confident happy it brought joy to my life now that I’m thinking about honestly I would go to the beach everywhere I was always showing it off I wore non transparent bags and I had it for 9 months and I ended up getting an obstruction and had to have a reversal again and last month I ended up going to the hospital because I thought I had an obstruction when I actually had a necrotic j-pouch so they had to remove my pouch and now Im 23 with a permanent ileostomy and I’ve adapted and I can’t complain it saved my life. It was either get an ileostomy or lose my life because of how severe it was I go back to work next week I’m kinda nervous and scared for some reason but I know I got this my stoma is pretty healthy and scars are healing good at time my skin feels tender whenever it’s time to change my bag I always shower without it on the day I need to replace it so my stoma can get some fresh air too but I’m definitely looking forward to the future. The only thing that I’m at a conflict about is having kids because I want them but at the same time I don’t because I would hate for my child to go through what I went/currently going through

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@angievaz29, you've been through a lot. It sounds like you've faced many different emotions and have arrived at a point of acceptance and embracing life. Have you been able to connect with anyone else in your age group who lives with an ostomy?

I hope you're enjoying the long weekend. How is the return to work going?

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@colleenyoung

@angievaz29, you've been through a lot. It sounds like you've faced many different emotions and have arrived at a point of acceptance and embracing life. Have you been able to connect with anyone else in your age group who lives with an ostomy?

I hope you're enjoying the long weekend. How is the return to work going?

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Definitely has been challenging for me and no I haven’t but I’m not really open about publicly and work was alright

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@angievaz29

Definitely has been challenging for me and no I haven’t but I’m not really open about publicly and work was alright

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Did you have to ask for any accommodations at work?

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It looks like my ileostomy will soon become a permanent part of my identity. Going from a loop to an end with total proctocolectomy at to remove the unhealthy parts. Crohn's continues to attack and we continue to fight back, and every battle has its scars. I am so thankful that my friends, my family and Mayo Clinic are with me every step of the way 🙏🙏🙏

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@fbt217

The Platypus bottle folds flat and has sports cap with a nozzle. It’s easy to carry and works nearly as well as the wash bottle. Amazon carries it in various sizes.
My ileostomy isn’t reversible because of the underlying cause. I had radiation therapy for prostate cancer in 2006. It cured the cancer but caused extensive damage to surrounding tissue: I have a recto-urethral fistula and a urethral stricture.

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Thanks. Followed a suggestion of standing to empty bag. Much easier. The output on toilet easier to clean.. Need to add clip to my bag for holding dress.
Smiles
cyngirl

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I had a colostomy on 6/1/2023. I’m doing fairly well. The difficulties I’m having are constipation and pancaking. Living in an independent living facility so am limited by food choices and taste changes from radiation and chemo following dx of throat cancer. Am trying stool softeners that I don’t think is working very well. Other issue is the ostomy pouch and adhesive laying on stitches from surgery. I’m told it may take 6-9 months before they dissolve. The pressure of the bag is enough to cause the pouch to be uncomfortable. Has anyone dealt with that issue? Thanks. Nancy

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Gail Garrepy here. I have had my Urostomy now for six months. I also have a left ureteral stent due to a blockage in that ureter. I will need that forever. It will be changed out every few months. It drains into my urostomy pouch. I’ve adjusted quite well to it all. I bought a stealth belt and I’m back to my aqua classes and finally getting my strength back.

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@a009507

I had a colostomy on 6/1/2023. I’m doing fairly well. The difficulties I’m having are constipation and pancaking. Living in an independent living facility so am limited by food choices and taste changes from radiation and chemo following dx of throat cancer. Am trying stool softeners that I don’t think is working very well. Other issue is the ostomy pouch and adhesive laying on stitches from surgery. I’m told it may take 6-9 months before they dissolve. The pressure of the bag is enough to cause the pouch to be uncomfortable. Has anyone dealt with that issue? Thanks. Nancy

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@a009507, I wanted to check in to see how you are doing. Have you managed to find a way to make the pouch more comfortable? Have you found a stool softener that helps?

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@colleenyoung

@a009507, I wanted to check in to see how you are doing. Have you managed to find a way to make the pouch more comfortable? Have you found a stool softener that helps?

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Thanks for asking. I’m now taking Miralax everyday. It’s working and has no taste which is even better. Also, am using water to clean my pouch. It really helps to clean out the pouch. I continue to have problems putting on my pouch so it sticks due to stomach roll in the area.

The stitches still present an issue but it seems I’ve become more accustomed to the discomfort.

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