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?

Having problems with my ceocomy tube

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@meg22

Hi! I had a bowel resection and colostomy on September 21 after two weeks of hospitalization and antibiotics. I was otherwise healthy with no medical history, and then on September 8 I had severe cramping, felt a shift, got a wave of cold from head to toe and started sweating profusely. Turns it I had diverticulitis, and probably diverticulosis for the past couple of years.

Anyway, as frustrating as being in hospital for 20 days was, things went relatively well considering the various complications I faced, and I was very well taken care of by a wonderful team of nurses.

Since I’ve been home, nearly a week, it seems that nothing has gone right.

I have a crease and my appliance leaks from there. I just met with my ostomy nurse yesterday and she put on a convex wafer for me. It’s holding up much better, but there is a bit of poop in my belly button. At least it’s not flowing out like with the flat wafers. I’m low on supplies, so I’ll wait until this evening to decide if it needs changing very badly.

On Sunday my surgical incision began weeping quite a lot, and I went to the ER where I was prescribed antibiotics.

Yesterday I had my first follow up with my surgeon. He took my staples out. A few hours later my incision began to separate, and it was back to the ER. From the time we noticed the separation to when I was treated it opened up significantly more. They packed it and put steri strips across as well as a sticky gauze dressing. I have an appointment tonight with the nurse care clinic for them to change out the dressings if need be. I suspect they will need to be as the weeping is soaking through the dressing.

My surgeon plans for me to have a new vacuum dressing applied in the next couple of days. I had one in hospital. He says this one will be a little higher quality so it’ll be less bothersome.

Anyway, I’m pretty frustrated overall. I’ve been in fairly good spirits the whole time, but near the end at the hospital and now at home I think my brain is catching up with what’s been happening, and I’m having a tough time. I’m not much of a crier or a complainer, but I’m so frustrated and a bit scared. And frustrated for my fiancée who has taken on so much and is just as helpless as I am with how to deal with all this new medical stuff. She’s so stressed. We both are.

I already see a psychiatrist regularly, so I do have that support. It’s just that this is the first time ever in my life that I’ve not had any say in anything to do with my body. I can’t do anything to really stop the incision from separating. I’m not good enough at changing appliances that I feel comfortable with the knowledge that I’m going to have to change the whole thing on my own for the first time probably today or tomorrow.

The plan is to have reversal surgery in about four months. Hopefully everything heals up well and it can happen.

So that is where I’m at. Not the greatest place and brand new to the world of medical issues and having zero control over what’s happening.

Thanks for listening.

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@meg22 Hi,
I hope you’re healing well and either have had your reversal surgery, or have it scheduled. I also had a diverticulitis perf and had a colostomy for 3 months. I also had an open wound after my staples were removed and I think I was a pocket of infection that needed to seep out. I had trouble with finding the right bag that didn’t leak. It was difficult to return to work. Fortunately I had experience taking care of colostomy bags, just not my own. I had a would care and ostomy nurse come for 6 weeks to do home care. This was in 2013, I still take senna and the first year was not easy to be “regular”, my doctor says I still have diverticulosis that she couldn’t remove everything or she wouldn’t be able to reconnect. It’s a 50/50 chance I’ll end up with another. My last colonoscopy went well and I cried so hard afterwards because, well I suppose I wanted the good news so badly. I hope that things are going well for you. And I’ll look to see if you’ve posted again. I still have to make sure I go on a regular basis. And I had incision pain for at least a year after the reversal. I was 29 at the time, and things get better.

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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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@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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Hi my dad is getting one – im not sure what the name for it is but bag on outside of body after bladder removal w/ in 6 weeks any advice or info you can give me to pass on?

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@formydad

Hi my dad is getting one – im not sure what the name for it is but bag on outside of body after bladder removal w/ in 6 weeks any advice or info you can give me to pass on?

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@formydad, Here's some information about bladder removal and urostomy:
– Bladder removal surgery (cystectomy) https://www.mayoclinic.org/tests-procedures/cystectomy/about/pac-20385108
– About Your Bladder Surgery With an Ileal Conduit (Urostomy) https://www.mskcc.org/cancer-care/patient-education/about-your-bladder-surgery-ileal-conduit-urostomy
– Managing Your Life After Bladder Removal https://www.webmd.com/cancer/bladder-cancer/life-after-bladder-removal#1

I also suggest following the Living with an Ostomy blog here on Connect https://connect.mayoclinic.org/page/living-with-an-ostomy/

@nickkarenl @jimmy2248 and @hodagwi can provide first-hand experience about living with an urostomy. @formydad, you are so wise to gather information to help your dad prepare for surgery, as well as for your mom who will be by his side as he adjust to life after bladder removal.

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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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