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.

@mlmcg

Four years ago I was discharged from the hospital without a third of my GI track. The sigmoid was gone and most of my ileum had been removed because my pelvis had received radiation in the 80's. Dead and scar tissue had been removed from the GI track that had been radiated.

I now live with a forever ostomy. Without the ileum my diet means limited nuts, seeds and no skins. Fruits have to be peeled, so I eat canned or dried. Tomatoes need to be peeled and seeded. Beans are iffy, corn has to be white young corn. No corn on the cob or yellow corn, my body cannot process it. Animal flesh is hard to process, I can do eggs and yogurt. Yogurt is my go to food, without the added fruits. If I want fruit I will add it myself, without the sugar. With an ileostomy foods are not fully processed so I take pills or shots to make sure I get the vitamins and minerals I need.

If your husband wants to loose weight the best way is not a diet but a forever lifestyle. It will be heavy in fruits and vegetables, low in fat, sugar, and sodium. Pasta and animal protein are limited to a small portion of your intake. Beef should be limited to once a week or every other week, fish, chicken or turkey can fill in the rest of the week.

When my urine is strong that means I am not getting enough water. Water should always be our beverage of choice, minimum 8-8oz glasses each day. Everything else has something added to it that is not good for the body.

If you can accept that you have a new lifestyle and it will be forever, your body will be happy. If your body is happy you will be happy. Good luck.

mlmcg

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Thanks for your tips. I feel I’ve adapted well to my ileostomy lifestyle over the last +6years and know how different foods affect me. I’ll continue to listen to my body and find my own balance, I just want to make sure there’s not an extra danger (for me w/o a colon) to be more keto friendly

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Hi, I am a 71 year old white male who also had pelvic radiation in 2006 for prostate cancer. In 2016 a fistual developed with a hole in the bladder with urine being funneled into the colon with colon material also getting into the bladder and resulting in bladder/kidney infections. I was told that only way to "cure" the situation was take out the bladder and put in a bag and take out a lot of the colon and replace with another bag, a two bagger, I guess. I can live with my urine coming out of my colon but not with the periodic infections that I get over the past 3 years, usually 2-3 a year, but antibiotics has taken care of it so far. I am on a low dose antibiotics daily now after getting a high dose for a week beginning on New Years Eve when infection happened. It cleared up. Yes, I know that this will happen again and that I am relatively healthy now to have both surgeries at the same time. Lots of lifestyle changes and eating changes if have the surgery and no guarantee that infections will go away. So what to do? No decision is a decision so have put it off so far. Your case with radiation is the closest to mine I have seen so far. Thoughts and issues you have faced or didn't know until after the surgery? I am being seen my Mayo. Thanks. Rich

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@nickkarenl

My husband was diagnosed with bladder cancer in 10/2011. He had neoadjuvant chemo for several months, his major surgery including formation of the ileal conduit for ostomy in spring 2012. Lots of complications, and ureter revision surgery in summer 2013. He’s been on the kidney transplant list for a couple years now, though is currently inactive on the list because his GFR is at 24...higher than when he was first places on the list.

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@nickkarenl I wanted to also let you know about the Transplants group and expert blog on Connect in case your interested in connecting with others on the wait list:

> Transplants group https://connect.mayoclinic.org/group/transplants/
> Transplant page (blog) https://connect.mayoclinic.org/page/transplant/

Has your husband experienced frequent infections like @hodagwi describes in his last message? If yes, how are they managed?

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Since a few members in this incredible group have mentioned Lynch syndrome, I thought you might be interested in viewing this recent video by Mayo Clinic gastroenterologist and medical oncologist, Dr. Frank Sinicrope, M.D.
– Understanding Lynch Syndrome https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/

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@jessicatrujillo

Having problems with my ceocomy tube

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Hi @jessicatrujillo and welcome to Connect! It's unfortunate that you are having problems with the cecostomy tube (C-tube).

What are the issues you are having with the your tube?

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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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