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.

Thank you SO much for the information!!
Im definitely educating myself and sending to them! Its a change in life so its good to know the facts! And 1st hand experience from others even better! So grateful for this place! 🥰

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@pmodahl

Hi to the group! We’ve been dealing with my son’s UC since 2012. All meds such as Remicade, Humira and Entivio have failed to reduce his symptoms long term. As a result he has been on prednisone ALOT. Now the Drs recommend his large intestine be removed. My son is only 16. Can anyone give us some advice about what to expect, how to handle the ileostomy bag, etc.?

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@pmodahl Hi and welcome to MayoClinicConnect. I’m sorry I just saw your request for information. @colleenyoung likes this blog that you might follow. https://connect.mayoclinic.org/page/living-with-an-ostomy/. This must be such a difficult time for your family. How is your son doing? You should be able to get lots of help on MayoClinicConnect

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Hi @colleenyoung I have had an ostomy for 5 years. I play tennis 3-4 days per week and am quite active and shower most days. I use a one piece appliance and it previously lasted 5-6 days before it needed changing. Recently it needs changing after 3 days. I use a Sensura one piece convex # 15606. I have tried protective shields, barrier paste, and elastic barriers. What is the ‘normal’ time between appliance changes?

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@dragonass

Hi @colleenyoung I have had an ostomy for 5 years. I play tennis 3-4 days per week and am quite active and shower most days. I use a one piece appliance and it previously lasted 5-6 days before it needed changing. Recently it needs changing after 3 days. I use a Sensura one piece convex # 15606. I have tried protective shields, barrier paste, and elastic barriers. What is the ‘normal’ time between appliance changes?

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@dragonass Wow, it seems like you’ve taken care of your ostomy quite well. Has anything changed that prompted you to ask this question? Is the skin around the site good, or getting red and irritated? If there is an ostomy nurse or clinic at the local hospital, I would suggest that you have everything looked at to ensure there are no problems. Let us know their suggestions!

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@pmodahl

Hi to the group! We’ve been dealing with my son’s UC since 2012. All meds such as Remicade, Humira and Entivio have failed to reduce his symptoms long term. As a result he has been on prednisone ALOT. Now the Drs recommend his large intestine be removed. My son is only 16. Can anyone give us some advice about what to expect, how to handle the ileostomy bag, etc.?

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Hi @pmodahl,

How is your son doing? Did he have the surgery? I thought it might help to connect with a few members – @supercalifragilistic @kitmus @beanglow @mayogirl @mjgstewart @mrigs @sandyrb – who’ve shared their insights about ileostomy.
I sincerely hope all is well, and look forward to hearing from you.

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@kanaazpereira

Welcome to Connect, @nickkarenl. I’m tagging @jimmy2248 @loricarey @hodagwi @palevsky @predictable @rayleemorris @manveen @mlmcg, as they may have some valuable experience to share.

Some common causes of urostomy odour:
Urinary tract infections and kidney infections can make your urine smell stronger and produce more mucus.
Some medications can affect the odour e.g antibiotics, dietary supplements etc
Certain foods can cause increased odour
Ostomy: Adapting to life after colostomy, ileostomy or urostomy" https://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825

@nickkarenl, could you share a few more details? When was your spouse diagnosed with bladder cancer? Did he have the urostomy recently?

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Thank you so much for your reply, @kanaazpereira . UTI has seemingly been the issue; antibiotics helped considerably! He seems to get UTIs somewhat frequently, BTW, to answer your question, the bladder cancer diagnosis came in 10/2011. Urostomy was placed during surgery 5/2012, following multiple rounds of chemo.

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@becsbuddy

@dragonass Wow, it seems like you’ve taken care of your ostomy quite well. Has anything changed that prompted you to ask this question? Is the skin around the site good, or getting red and irritated? If there is an ostomy nurse or clinic at the local hospital, I would suggest that you have everything looked at to ensure there are no problems. Let us know their suggestions!

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Hi @becsbuddy thanks. Yes my skin around my stoma is getting red & irritated and instead of blasting 5-7 days my appliance needs to be changed every 3-4 days. I have worked with the Mayo Clinic ostomy nurse but when they attach the bag it lasts less than 3 days. I am not obese, I only weigh 135 pounds and am 5’ 7”. I am interested in hearing about new appliances, barrier strips, paste, etc. Also, what is the expected time for an appliance to last for active people?

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@dragonass

Hi @becsbuddy thanks. Yes my skin around my stoma is getting red & irritated and instead of blasting 5-7 days my appliance needs to be changed every 3-4 days. I have worked with the Mayo Clinic ostomy nurse but when they attach the bag it lasts less than 3 days. I am not obese, I only weigh 135 pounds and am 5’ 7”. I am interested in hearing about new appliances, barrier strips, paste, etc. Also, what is the expected time for an appliance to last for active people?

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@dragonass Thanks for replying. The appliance stays on different times for each person, so I really can’t say. I would say, though, that you might want to have the skin around your ostomy looked at. You sure don’t want the skin to get bad! . Check with the United Ostomy Association for a support group in your area. They would be the best folks to know all about different appliances. The association also has a Facebook page. And let me know if your skin is OK.

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I received my stoma 5 years ago and what has worked for me, since my skin is sensitive to all things that stick to my body, I use "No Sting Barrier Film". A few years ago I started to have the irritation. Figuring I was not cleaning the skin under the one piece pouch, I got out the "No-Rinse Foaming Body Wash", I was given when I was in the hospital. It works, I do rinse the Body Wash off. I also noticed that the tape was not sticking, which means I was not holding the pouch in place long enough (3-5 minutes) for the tape to "mold" to my body. If you do not have "hot" hands just use the hairdryer. If that fails try the rings, 3-5 days is a normal time for a pouch change. I have also found out that how many showers you take can tell you how often the pouch needs to be changed. (Water gets under the tape.) If you have hair under the tape you may want to remove it or if you sweat a lot these can cause the tape not to stick so the pouch has to be changed more often. At one time almost all Ostomy Nurses had an ostomy, now more people are going into the field. If you can, ask for an ostomy patient/nurse. I hope this info can help. Good Luck.
mlmcg

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Having had an ileostomy for 50 years, I believe I've tried just about every skin barrier product known to man. My skin is allergic to almost everything except water. I also have a burst appendix scar above my stoma and a hernia to the right of my stoma.
For me the best skin barrier product is one made by Hollister (hollister.com). I wear their appliance for at least a week and usually for up to 10 days. And yes, I shower daily. I know this wear time is not recommended, but it works for me.
Before applying the appliance I put a slim O-ring over my stoma. When applying the appliance I hold it on the skin for approximately 60 seconds and then window tape it with a silicone water proof tape. Every tape I have tried eventually ended up irritating my skin, except for this silicone water proof tape.
Following on the products, mentioned above, that I use. Go to Hollister's web site for more product and description information. I hope this is of some help.

SKIN BARRIER RINGS SLIM 2" OD 2.3 MM THICK (10/BX) #HO8815
BARRIER 2PC CTF 1" CVX CERAPLUS XTDWEAR GRN FLNG (5) #HO15302
TAPE WATERPROOF 1"X 15FT SILICONE (1) LF #SNS57230

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